THE PALLIATIVE CARE REFERRAL DECISION MAKING PROCESS … · patient access to specialist palliative care services in acute cancer care setting. Australian Palliative Care Conference,

THE PALLIATIVE CARE REFERRAL DECISION-MAKING PROCESS IN THE ACUTE CANCER

SETTING: NURSES’ ADVOCACY BEHAVIOURS

AND THE FACTORS INFLUENCING THESE

BEHAVIOURS

Sarah Northfield

BN, RN, GradCert (Cancer Nursing)

Submitted in fulfilment of the requirements for the degree of

Master of Applied Science (Research)

Institute of Health and Biomedical Innovation

Faculty of Health

Queensland University of Technology

2018

Nurses’ advocacy behaviours and the factors influencing these behaviours i

Supervision Team

Principal Supervisor

Professor Patsy Yates

Head, School of Nursing, Queensland University of Technology;

Director, Centre for Palliative Care Research and Education, Queensland Health;

Professor, School of Nursing and Institute of Health and Biomedical Innovation,

Queensland University of Technology;

Professor, Cancer Nursing Professorial Precinct, Cancer Care Services, Royal

Brisbane and Women’s Hospital, Queensland Health.

Associate Supervisors

Professor Raymond Chan

Professor, School of Nursing and Institute of Health and Biomedical Innovation,

Queensland University of Technology;

Professor, Metro North Hospital & Health Service, Queensland Health;

Professor, Cancer Nursing Professorial Precinct, Cancer Care Services, Royal

Brisbane and Women’s Hospital, Queensland Health.

Dr John Rosenberg

Research Fellow, NHMRC Centre of Research Excellence in End of Life Care,

Institute of Health and Biomedical Innovation, Queensland University of

Technology.

ii Nurses’ advocacy behaviours and the factors influencing these behaviours

Publications Related To This Thesis

Conference presentations

1. Northfield S, Chan RJ, Rosenberg J, Yates P. (2016). Factors that influence

palliative care referrals for hospitalised patients with advanced cancer: An

integrative review. Cancer Nurses Society of Australia (CNSA) 19th Annual

Congress, 12–14 May 2016, Cairns, Australia.

2. Northfield S, Chan RJ, Rosenberg J, Yates P. (2017). Factors associated with

patient access to specialist palliative care services in acute cancer care setting.

Australian Palliative Care Conference, 6–8 September 2017, Adelaide,

Australia.

3. Northfield S, Chan RJ, Rosenberg J, Yates P. (2017). Identifying the factors

that influence cancer nurses advocating for patient referrals to specialist

palliative care services: A national survey. Australian Palliative Care

Conference, 6–8 September 2017, Adelaide, Australia.

Nurses’ advocacy behaviours and the factors influencing these behaviours iii

Keywords

Advanced cancer, backward stepwise regression, behaviour change, BCW, cancer care, cancer nurse, COM-B model, decision-making process, descriptive statistics, factors, nursing advocacy, palliative care, referral, SPCS, survey, TDF.

iv Nurses’ advocacy behaviours and the factors influencing these behaviours

Abstract

Background

Despite early referrals to specialist palliative care services (SPCS) providing

significant benefits to patients with advanced cancer, referrals often occur late in the

disease trajectory. The advocacy role of cancer nurses in influencing referrals to

SPCS is not well understood. Gaining an understanding of their advocacy role will

inform future interventions for promoting early referrals to SPCS.

Aims

This study focused on expanding understanding of the clinical, professional

and health system factors that influence the decision-making process for a referral to

be made to SPCS for hospitalised patients with advanced cancer. The purpose of this

study was to examine the actions cancer nurses take to advocate for the referral of

patients with cancer to SPCS, the frequency and timing of these actions, and the

factors influencing these actions.

Methods

A cross-sectional survey design was used. Stage One involved the development

of a survey instrument for measuring the frequency of cancer nurses’ advocacy

behaviours for patient referrals to SPCS and the demographic factors and potential

determinants associated with these behaviours. Survey development was guided by

the conceptual framework for this study (made up of Theoretical Domains

Framework (TDF), Capability Opportunity Motivation–Behavioural (COM-B) model

and Behaviour Change Wheel (BCW)), selected survey instruments, relevant

literature and expert opinion. The survey instrument was reviewed by six content

experts and pilot tested with a purposive sample of six postgraduate nursing students

(response rate 60%) enrolled at Queensland University of Technology (QUT). Using

the refined survey instrument, the second stage of this study involved an online

Nurses’ advocacy behaviours and the factors influencing these behaviours v

cross-sectional survey of cancer nurses distributed through two professional

organisations.

Results

Of the 130 respondents, most were experienced cancer nurses (63.8%, n =

81/127) and working in major cities (75.4%, n = 92/122) with access to a dedicated

SPCS (86.9%, n = 113/130). Mean scores indicated respondents performed the 11

nursing advocacy behaviours listed in the survey within the past year. The two most

commonly reported types of nursing advocacy behaviours always performed were

counselling (M = 14.72, SD = 3.45, 25.95%) and analysing (M = 11.49, SD = 3.00,

24.79%) behaviours. In contrast, only 18.18% of the sample reported always

performing responding behaviours (M = 4.85, SD = 1.87).

Nurses generally had favourable perspectives about advocating for patient

referrals to SPCS. Most survey respondents always or often advocated for referral

when end of life was imminent (n = 95/121, 78.5%) and often advocated for referral

when no further curative treatment could be offered for advanced cancer (n = 96/121,

79.3%). Respondents rarely or never advocated for referral at diagnosis of cancer,

regardless of prognosis (n = 83/121, 68.6%).

Multivariable analyses identified that cancer nurses with the scope to directly

refer and positive motivations towards SPCS engaged in all types of nursing

advocacy behaviours more frequently than other nurses. A statistically significant

positive relationship was identified between completion of palliative care specific

education and the frequency of counselling behaviours. A statistically significant

negative relationship was identified between cancer nurses who worked in

metropolitan areas and the frequency of responding behaviours.

Conclusions

This was the first Australian study to identify the advocacy role of cancer

nurses in the referral decision-making process to SPCS. Cancer nurses frequently

vi Nurses’ advocacy behaviours and the factors influencing these behaviours

advocated for referrals to SPCS if they had positive beliefs and the scope of practice

to directly refer to the service. Future research should examine the referral decision-

making process from the perspectives of all key stakeholders (patients, caregivers,

physicians, nurses and allied health professionals) to select central target behaviours

and design behaviour change interventions to promote appropriate referrals to SPCS.

Nurses’ advocacy behaviours and the factors influencing these behaviours vii

Table of Contents

Supervision Team ..................................................................................................................... i

Publications Related To This Thesis ........................................................................................ ii

Keywords ................................................................................................................................ iii

Abstract ................................................................................................................................... iv

Table of Contents ................................................................................................................... vii

List of Figures ........................................................................................................................... x

List of Tables .......................................................................................................................... xi

List of Abbreviations ............................................................................................................. xii

Statement of Original Authorship ......................................................................................... xiii

Acknowledgements ............................................................................................................... xiv

Introduction ...................................................................................... 1

1.1 BACKGROUND AND THE SCOPE OF THE PROBLEM .......................................... 1

1.2 PURPOSE ....................................................................................................................... 3

1.3 CONTEXT ...................................................................................................................... 3

1.4 SIGNIFICANCE ............................................................................................................ 5

1.5 SCOPE OF THIS STUDY.............................................................................................. 6

1.6 STUDY DEFINITIONS ................................................................................................. 7

1.7 THESIS OUTLINE ...................................................................................................... 10

Conceptual Framework ................................................................. 13

2.1 INTRODUCTION ........................................................................................................ 13

2.2 FACILITATING BEHAVIOUR CHANGE IN THE HEALTHCARE SETTING ..... 13

2.3 THE BEHAVIOUR CHANGE WHEEL (BCW) ............................................................ 15

2.4 APPLYING THE FRAMEWORKS TO THE BEHAVIOUR OF INTEREST ........... 19

2.5 CONCLUSION ............................................................................................................ 20

Integrative Review .......................................................................... 21

3.1 INTRODUCTION ........................................................................................................ 21

3.2 AIMS ............................................................................................................................ 21

3.3 METHODS ................................................................................................................... 21

3.4 OUTCOMES OF THE LITERATURE SEARCH ....................................................... 23

3.5 QUALITY APPRAISAL OUTCOMES ....................................................................... 27

3.6 FINDINGS .................................................................................................................... 27

3.7 DISCUSSION ............................................................................................................... 39

3.8 LIMITATIONS ............................................................................................................ 41

3.9 CONCLUSION ............................................................................................................ 43

viii Nurses’ advocacy behaviours and the factors influencing these behaviours

Stage One Methods & Results ....................................................... 45

4.1 AN OVERVIEW OF THE RESEARCH DESIGN ..................................................... 45

4.2 INTRODUCTION TO STAGE ONE .......................................................................... 45

4.3 STAGE ONE: DEVELOPMENT OF THE QUESTIONNAIRE ................................ 45

4.4 EXPERT PANEL ......................................................................................................... 61

4.5 PILOT TEST ................................................................................................................ 62

4.6 STAGE ONE RESULTS ............................................................................................. 64

Stage Two Methods ........................................................................ 69

5 STAGE TWO METHODS: MAIN STUDY ............................................................... 69

5.1 INTRODUCTION ....................................................................................................... 69

5.2 ETHICAL CONSIDERATIONS ................................................................................. 77

5.3 SUMMARY ................................................................................................................. 79

Stage Two Results ........................................................................... 81

6.1 INTRODUCTION ....................................................................................................... 81

6.2 SAMPLE CHARACTERISTICS FOR THE CROSS-SECTIONAL SURVEY ......... 81

6.3 SCALE RELIABILITY AND MISSING DATA ........................................................ 86

6.4 FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD ..................................................... 88

6.5 FACTORS INFLUENCING NURSING ADVOCACY BEHAVIOURS ................... 90

6.6 FREQUENCY OF ADVOCATING FOR REFERRALS TO SPCS AT SPECIFIC TIME POINTS ....................................................................................................................... 91

6.7 RELATIONSHIPS BETWEEN DEMOGRAPHIC FACTORS, POTENTIAL BEHAVIOURAL DETERMINANTS AND NURSING ADVOCACY BEHAVIOURS .... 93

6.8 THE RELATIONSHIPS BETWEEN SELECTED DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS AND THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS ............................................................................ 98

Discussion & Conclusion .............................................................. 105

7.1 INTRODUCTION ..................................................................................................... 105

7.2 WHAT IS THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD? ............................... 105

7.3 WHAT ARE THE POTENTIAL BEHAVIOURAL DETERMINANTS (AS DEFINED BY THE DOMAINS OF THE DIBQ) INFLUENCING NURSES ADVOCATING FOR PATIENT REFERRALS TO SPCS? ............................................... 107

7.4 WHAT ARE THE MOST COMMON TIME POINTS FOR CANCER NURSES TO ADVOCATE FOR PATIENT REFERRALS TO SPCS? .................................................... 108

7.5 WHAT ARE THE RELATIONSHIPS BETWEEN THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE NURSING ADVOCACY BEHAVIOURS AND THE FREQUENCY OF THESE BEHAVIOURS? .................................................................................................................. 110

7.6 CAN THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS BE EXPLAINED BY THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE THESE BEHAVIOURS? .... 113

Nurses’ advocacy behaviours and the factors influencing these behaviours ix

7.7 IMPLICATIONS ........................................................................................................ 114

7.8 LIMITATIONS OF THE STUDY ............................................................................. 119

7.9 RECOMMENDATIONS FOR FUTURE RESEARCH ............................................. 120

7.10 CONCLUSIONS ........................................................................................................ 121

References ............................................................................................................... 125

Appendices .............................................................................................................. 137

PRISMA Flow diagram ................................................................................... 137

Table B1 The behavioural analysis using the TDF domains linked to the COM-B model ................................................................................................................................. 139

Email invitation, email reminder – content validity ......................................... 141

Participant information sheet – content validity ............................................... 145

Definitions of key constructs & content validity instructions ........................... 147

Initial NACC questionnaire ............................................................................... 148

Survey evaluation form – content validity ....................................................... 169

Email invitation, email reminder – face validity & pilot testing ...................... 174

Pilot test instructions .......................................................................................... 179

Participant information sheet – face validity & pilot testing ............................. 181

Survey evaluation form – face validity ............................................................ 183

Final NACC questionnaire ................................................................................ 189

QUT HREC approval – cross-sectional study ................................................. 209

QUT HREC approval of amendments – cross-sectional study ........................ 211

HSANZ approval to distribute survey to Australian nursing membership ...... 213

CNSA approval to distribute survey to membership ........................................ 215

Scatterplot for relationship between years of experience as SPCS nurse and analysing behaviours ............................................................................................................ 217

Scatterplot for relationship between years of experience as SPCS nurse and counselling behaviours .......................................................................................................... 219

Scatterplot for relationship between years of experience as SPCS nurse and responding behaviours .......................................................................................................... 221

Table M1 Multiple correlation matrix for all regression models (n = 110) ...... 223

Scatterplot for frequency of analysing behaviours model ................................ 225

Scatterplot for frequency of counselling behaviours model ............................. 227

Scatterplot for frequency of responding behaviours model ............................ 229

Table Q1 Sequential backward stepwise regression models for analysing behaviours (n = 110) ............................................................................................................. 231

Table R1 Sequential backward stepwise regression models for counselling behaviours (n = 110) ............................................................................................................. 233

Table S1 Sequential backward stepwise regression models for responding behaviours (n = 110) ............................................................................................................. 235

x Nurses’ advocacy behaviours and the factors influencing these behaviours

List of Figures

Figure 2-1. The BCW. ................................................................................................ 15

Figure 4-1. Procedures for the development of the NACC questionnaire. ................. 47

Figure 6-1. Flowchart of survey participants. ............................................................ 82

Nurses’ advocacy behaviours and the factors influencing these behaviours xi

List of Tables

Table 2.1. The 14 domains of the refined TDF linked to the components of the COM-B model .............................................................................................. 16

Table 3.1. The terms used in the search strategy ....................................................... 22

Table 3.2. Review Matrix .......................................................................................... 24

Table 4.1. Categorisation of nursing advocacy behaviours ...................................... 50

Table 4.2. Measurement scales for the DIBQ ............................................................ 52

Table 4.3. Initial NACC questionnaire items developed from multiple sources ........ 55

Table 4.4. Measurement scales for DOCNAB subscale ............................................. 59

Table 4.5. Amendment report outlining changes and rationales after content and face validity testing of NACC questionnaire ......................................... 65

Table 6.1. Demographic characteristics of the survey respondents ........................... 84

Table 6.2. Descriptive statistics for all 18 DIBQ-based domains of the NACC questionnaire ................................................................................................ 87

Table 6.3 Frequency of behaviours by nurses when advocating for patient referrals to SPCS in the past year ................................................................ 89

Table 6.4. Frequency of cancer nurses advocating for patient referrals to SPCS at specific time points .................................................................................. 92

Table 6.5 Descriptive statistics for total capabilities, total opportunities and motivations scores (n = 110) ........................................................................ 94

Table 6.6. Correlations between the frequency of nursing advocacy behaviours and selected potential behavioural determinants and demographic factors (n = 110) ........................................................................................... 94

Table 6.7. The relationships between selected demographic factors and frequency of nursing advocacy behaviours (analysing, counselling and responding) (n = 110) .................................................................................. 97

Table 6.8. The initial and final models for predictors of frequency for analysing behaviours (n = 110) .................................................................................. 101

Table 6.9. The initial and final models for predictors of frequency for counselling behaviours (n = 110) ............................................................... 102

Table 6.10. The initial and final models for predictors of frequency for responding behaviours (n = 110) ............................................................... 103

xii Nurses’ advocacy behaviours and the factors influencing these behaviours

List of Abbreviations

Abbreviated form Full name ABS Australian Bureau of StatisticsANOVA Analysis of VarianceAPPC Advocacy in Procedural Pain Care ASGC-RA Australian Standard Geographical Classification – Remoteness

Areas BCW Behaviour Change Wheel CAMO Canadian Association of Medical OncologistsCARO Canadian Association of Radiation OncologistsCI Confidence IntervalCNSA Cancer Nurses Society of AustraliaCOM-B model Capability Opportunity Motivation – Behavioural modelCSSO Canadian Society of Surgical OncologyCVI Content Validity IndexCVR Content Validity RatioDIBQ Determinants of Implementation Behaviour Questionnaire DOCNAB Determinants of Cancer Nursing Advocacy Behaviours ENABLE II RCT Educate, Nurture, Advise, Before Life Ends II Randomised Clinical

Trial GP General PractitionerHSANZ Haematology Society of Australia and New ZealandMOGA Medical Oncology Group of AustraliaNAA-PCR Nursing Advocacy Actions taken to facilitate Palliative Care

Referrals NACC Nursing Advocacy in Cancer Care NHMRC National Health and Medical Research CouncilPRISMA Preferred Reporting Items for Systematic Reviews and Meta-

Analyses QUT Queensland University of TechnologyRA Remoteness AreaRCT Randomised Control TrialSD Standard DeviationSE Standard Error SPCS Specialist Palliative Care ServicesTDF Theoretical Domains Framework VAS Visual Analog ScaleVIF Variance Inflation FactorUHREC University Human Research Ethics Committee

Nurses’ advocacy behaviours and the factors influencing these behaviours xiii

Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet

requirements for an award at this or any other higher education institution. To the

best of my knowledge and belief, the thesis contains no material previously

published or written by another person except where due reference is made.

Signature: QUT Verified Signature

Date: ____29.03.2018____________

xiv Nurses’ advocacy behaviours and the factors influencing these behaviours

Acknowledgements

This Master of Applied Science (Research) degree would not have been

possible without the assistance of the following people. First and foremost, I would

like to thank my supervisors, Professor Patsy Yates, Professor Raymond Chan and

Dr John Rosenberg for their ongoing support, encouragement and copious amounts

of time given over the last four years in assisting me to complete this research and

thesis. I have felt fortunate to have been advised by supervisors who are world-class

researchers, whom I admire for their drive, vision and achievements in their fields of

nursing. I really appreciate their guidance and expert advice throughout this

MAppSci study and my research training during candidature.

I would also like to thank Lee Jones (Biostatistician, QUT) for her statistical

advice. Professional editor, [Dr Gillian Ray-Barruel], provided copy-editing and

proofreading services, according to the guidelines laid out in the university-endorsed

national ‘Guidelines for editing research theses’.

During Stage One of this study, three internationally renowned academics in

the fields of nursing advocacy, cancer nursing and palliative care, and three highly

experienced oncology/haematology nurses generously gave their time and expertise

towards the content validity phase of this study. In addition, six postgraduate nursing

students from QUT kindly chose to assist with the face validity phase of this study.

Without their enthusiasm for this study and willingness to assist with reviewing and

providing feedback on the survey instrument and its constructs, this research would

not have been possible.

I would also like to acknowledge Tracy Glynn, Nicole Gavin and Gillian

Nasato, Cancer Care Services, Royal Brisbane and Women’s Hospital (RBWH) for

supporting me throughout this thesis and approving periods of annual and long

service leave to enable me to complete this research.

I would like to thank Professor Joan Webster (Nursing Director, Research,

RBWH) for her ongoing support, encouragement and troubleshooting advice, ever

since I began studying research and working in the Nursing and Midwifery Research

Nurses’ advocacy behaviours and the factors influencing these behaviours xv

Centre. To my work colleagues, thanks for providing a listening ear when it was

needed and for celebrating the highs and lows of this research study with me.

Finally, I could not have completed this research without the ongoing support

of my family and friends. To my friends, particularly Annaliese, Natalie, Chris, Mel,

Nicole, Julie and Elise, thank you for your constant encouragement and for tolerating

me throughout the challenging times of this study. To my parents, Daryl and Lyn,

sisters, Emma and Kate, grandparents, June and Ralph, and aunty, Glenda, thank you

for all your love, support, patience and understanding over the last four years. Words

cannot adequately express how much your support has meant to me. Last but

certainly not least, to my dogs, Fifi and Bruno, for their cuddles and companionship

during many hours spent in front of the computer.

Chapter 1: Introduction 1

Introduction

1.1 BACKGROUND AND THE SCOPE OF THE PROBLEM

The number of people diagnosed with cancer each year is projected to rise to

23.6 million cases worldwide by 2030, an increase of 68% from 2012 (Bray, Jemal,

Grey, Ferlay, & Forman, 2012). Combined with advances in screening and treatment,

these improvements mean that the number of people living with cancer is increasing

globally (Torre et al., 2015). While a growing number of people are diagnosed early

and will be cured from their disease, a notable proportion of people with cancer will

be diagnosed with or develop advanced cancer which ultimately progresses and leads

to death.

The disease trajectory for people living with advanced cancer has changed

significantly in recent years (Park & Rosenstein, 2014). Five-year survival rates

indicate that more people are living with advanced cancer for longer periods of time

(Siegel, Ma, Zou, & Jemal, 2014). Importantly, a multitude of distressing symptoms

can be experienced by people with advanced cancer (such as pain, fatigue, sleep

disturbance, depression and breathlessness) which, unless alleviated, can cause

significant distress for the individual and their family (Higginson & Costantini,

2008). Thus, optimising quality of life, improving symptom management and

alleviating distress are important goals of care for this population.

Early referral to Specialist Palliative Care Services (SPCS) can improve

symptom management (Bakitas et al., 2009; Higginson et al., 2014; Temel et al.,

2010), quality of life (Ferrell et al., 2015; Grudzen et al., 2016; Temel et al., 2010;

Zimmermann et al., 2014) and in some cases even prolong survival for patients with

advanced cancer (Bakitas et al., 2015; Temel et al., 2010). SPCS aim to improve the

quality of life of those living with life-limiting illnesses and their families by

providing treatment to alleviate any psychosocial, spiritual or physical distress

(World Health Organization, 2017). Palliative care was traditionally associated with

the provision of end-of-life care. However, these days this specialty has widened its

scope of practice to provide support for individuals and their families at earlier stages

of the disease (Greer, Jackson, Meier, & Temel, 2013).

2 Chapter 1: Introduction

In addition, SPCS aim to assist in treatment decision-making by ensuring

patients’ care preferences and families’ concerns are addressed. Nurses have a

critical role to play as the primary provider of round-the-clock clinical care, assessing

and managing physical, psychological, social and spiritual issues experienced by

patients and their families. Nurses communicate patients’ concerns to the

multidisciplinary team and escalate matters to physicians when necessary, in order to

deliver care that is in accordance with their patients’ treatment preferences and hopes

for the future (Gabriel, 2008).

Nevertheless, many studies have reported that the multidisciplinary oncology

team predominantly make referrals to SPCS for end-of-life care, rather than referring

patients earlier in the disease trajectory (Dalal et al., 2011; Reville, Reifsnyder,

McGuire, Kaiser, & Santana, 2013; Waller et al., 2008; Weissman & Meier, 2011).

Similarly, studies set in the haematology in-patient setting report that referrals to

SPCS are infrequent (LeBlanc & El-Jawahri, 2015), occurring during the terminal

phases of disease or not at all. The timing of these referral decisions can determine

whether patients receive care that meets their immediate needs, as well as their goals

and hopes for the future. Late referrals restrict the amount of time available to SPCS

to alleviate distressing symptoms and improve the quality of life of those living with

advanced cancer and their families. Nevertheless, the decision-making process for

healthcare professionals considering patient referrals to SPCS is poorly understood,

especially in the acute cancer care setting. To date, the clinical, professional and

health system factors that influence this critical decision-making process have not

been clearly articulated in the literature (Broom, Kirby, & Good, 2012). More

research on this topic is warranted, to establish the factors influencing this decision-

making process in the acute setting.

The benefits of early integration of palliative care for those with advanced

cancer are well documented throughout the literature (Ferrell et al., 2016; Johnson,

Girgis, Paul, & Currow, 2008; A. Waller, Girgis, Currow, Lecathelinais, & Palliative

Care Research Program, 2008; Weissman & Meier, 2011). In a study by Temel et al.

(2010), the introduction of palliative care combined with standard oncology care for

newly diagnosed ambulatory metastatic non-small cell lung cancer patients

significantly improved their quality of life, mood and period of survival, when

compared to the control group. Although there is growing literature supporting early


referrals, there are a range of factors that can influence the complex decision-making

process associated with the referral of patients with advanced cancer to SPCS (Ward,

Agar, & Koczwara, 2009). Reaching an agreement within the multidisciplinary team

on this complex decision can be perplexing for all healthcare professionals involved,

from personal and professional perspectives (Broom et al., 2012).

The primary role of healthcare professionals is to provide comprehensive care

that meets the needs of each individual patient and their family. To fulfil this duty of

care, the treating multidisciplinary team often needs to seek the advice of other

clinical specialists to manage the complex care needs of patients with advanced

cancer in a timely and appropriate manner. A referral to SPCS provides access to a

multidisciplinary team who aims to deliver care that is tailored to the individual

needs of the patient and their family (Broom et al., 2012). It is critical that the factors

influencing the referral decision-making process to SPCS are well understood, as

there are significant repercussions for patients, families and healthcare professionals

when inadequate referral practices occur (Broom et al., 2012).

1.2 PURPOSE

The purpose of the study was to examine the actions cancer nurses take to

advocate for the referral of patients with cancer to SPCS, as well as the individual

and organisational factors that influence these actions.

1.3 CONTEXT

The factors that affect the referral decision-making process to SPCS differ

greatly depending on the context. In this study, context refers to the acute cancer care

environment in which healthcare professionals initiate patient referrals to SPCS

where needed. The following section briefly explores the influence of context on the

role of healthcare professionals practising in Australia.

Over time, SPCS has evolved from solely providing hospice or end-of-life care

to focusing on improving the quality of life of those living with life-limiting illnesses

earlier in the disease trajectory (Maltoni et al., 2016; World Health Organization,

2017). In contrast, care delivery within the acute care setting is often disease-


orientated (McCance, McCormack, & Dewing, 2011), focused on providing patients

with curative treatments (Smith et al., 2010). There have been difficulties integrating

these two approaches to patient care in the Australian healthcare setting which has

affected collaborations between acute cancer care and SPCS (Johnson, Paul, Girgis,

Adams, & Currow, 2011; LeBlanc & El-Jawahri, 2015).

Varying levels of healthcare resources have also affected palliative care

provision in Australia. Large metropolitan government-funded hospitals generally

provide dedicated SPCS (Johnson et al., 2008; Johnson et al., 2011; Ward et al.,

2009). Compared to many other countries, SPCS are generally widely available

across Australia and freely provided in tertiary public hospitals (Johnson et al.,

2011). However, the level and quality of SPCS varies across the system, with some

facilities only providing access to an external or consultancy service (WA

Department of Health, 2017). Such varying levels of access to this important

healthcare resource influences the practices of healthcare professionals (Johnson et

al., 2008; Johnson et al., 2011).

The role of the multidisciplinary team in the acute cancer care setting is

similarly variable. In Australia, multidisciplinary models of care generally aim to

provide needs-based patient care. These goals of care can be difficult to achieve due

to the time constraints and high patient turnover that often occurs in the acute care

setting. Nevertheless, when the treating team is unable to adequately respond to

patient needs, healthcare professionals have a responsibility to consider referral to

SPCS (Broom et al., 2012). All healthcare professionals contribute to the palliative

care referral decision-making process by assessing the complexity and multiplicity of

patient and family needs and care preferences. If patients are found to have a high

symptom burden, allied health professionals and nurses have a duty of care to act as

the patient advocate and facilitate referrals to SPCS. However, in most acute care

settings, only physicians, nurse practitioners and/or Clinical Nurse Consultants (with

or without specialist training) have the authority to formally initiate referrals to SPCS

(Johnson et al., 2011; Olivia Newton-John Cancer Wellness & Research Centre,

2017; WA Department of Health, 2017).

Few studies describe the role of nurses and nurse practitioners in initiating or

advocating for referrals to SPCS in the acute cancer care setting (Bakitas, Lyons,

Hegel, & Ahles, 2013; Fadul et al., 2009; Pavlish & Ceronsky, 2007, 2009).


Compared to other healthcare professionals, nurses spend the most time with patients

across their cancer trajectory (Gosselin-Acomb, Schneider, Clough, & Veenstra,

2007; Mahfudh, 2011), which provides unique opportunities to understand the needs

of patients and their families (Gosselin-Acomb et al., 2007). Therefore, gaining an

understanding of the role and perspectives of nurses in the referral decision-making

process is important and will inform future interventions for enabling early referrals

to SPCS where appropriate.

1.4 SIGNIFICANCE

In 2008, approximately 12.7 million cases of cancer occurred globally, which

is projected to rise to 23.6 million cases by 2030 (Bray et al., 2012). Combined with

a growing aging population (Jemal et al., 2011) this places considerable burden on

individuals, families and the healthcare system (Bray et al., 2012). Advances in early

detection and cancer treatments have resulted in more people living longer with

advanced cancer (Torre et al., 2015). The complexity and severity of needs

experienced by patients, caregivers and families living with advanced cancer can

cause significant distress if inadequate support is provided (Broom et al., 2012;

Higginson & Costantini, 2008). Early referral to SPCS can improve symptom

management, quality of life (Bakitas et al., 2009; Ferrell et al., 2016; Temel et al.,

2010) and patient satisfaction (Gade et al., 2008), as well as reduce caregiver

(Dionne-Odom et al., 2015; Meyers et al., 2011). In some cases, studies have

reported that early referral has optimised the timing of final chemotherapy regimens

(Greer et al., 2012), reduced aggressive treatment at the end of life (Temel et al.,

2010), resulting in more timely hospice admissions (Greer et al., 2012) and

prolonged survival (Bakitas et al., 2015; Temel et al., 2010).

Despite this growing evidence of the multiple benefits of early referral to

palliative care, many healthcare professionals refer patients with advanced cancer to

SPCS late in the disease trajectory (Dalal et al., 2011; Manitta, Philip, & Cole-

Sinclair; Reville et al., 2013; Waller et al., 2008; Weissman & Meier, 2011) or not at

all (Broom, Kirby, Good, Wootton, & Adams, 2012; LeBlanc & El-Jawahri, 2015).

Delayed or non-referrals result in significant costs, including reduced caregiver and

family wellbeing (Temel et al., 2011); increased likelihood of patients and families


feeling insufficiently prepared for the end of life (McNamara & Rosenwax, 2010);

and suboptimal symptom management, increasing distress in patients, families and

healthcare professionals (Greer et al., 2012). While a knowledge translation problem

exists (Bakitas et al., 2013; Johnson et al., 2011; LeBlanc & El-Jawahri, 2015; Ward,

Agar, & Koczwara, 2009), limited literature has addressed this problem. A clear

understanding of the factors that influence the referral decision-making process is

needed (Broom et al., 2012) in order to develop targeted interventions that aim to

optimise referral practices between oncology, haematology and SPCS (Broom &

Adams, 2010; Ferrell et al., 2016).

1.5 SCOPE OF THIS STUDY

This study focuses on expanding our understanding of the factors that influence

registered nurses’ referral decision-making process to SPCS for hospitalised patients

with advanced cancer. To explore the research question, this study was divided into

two stages: (i) the development of a questionnaire, guided by the findings of an

integrative review, and (ii) a cross-sectional survey.

Stage One

The first stage focuses on establishing the factors that influence a poorly

understood problem: the referral decision-making process to SPCS. To date, it is not

clear what influences a healthcare professional to refer a patient with advanced

cancer to SPCS (Broom et al., 2012). Complementary theoretical frameworks were

chosen (Michie et al., 2005; Michie, van Stralen, & West, 2011) to guide the

development of an integrative review, problem analysis and identification of

behaviour change processes. The findings of this review provided a context for the

main study and informed the development of a questionnaire for nurses who provide

care to patients with cancer in the in-patient setting.

Stage Two

Stage Two involved a cross-sectional survey of the membership of two

Australian professional organisations (Cancer Nurses Society of Australia [CNSA]


and Haematology Society of Australia and New Zealand [HSANZ] Nurses Group) to

describe oncology and haematology nurses’ contributions to the referral decision-

making process. The survey aimed to identify nurses’ perceptions of the specific

actions they take to facilitate the referral of patients with cancer to SPCS in the in-

patient setting and the organisational and individual factors that influence these

actions.

1.6 STUDY DEFINITIONS

Throughout this thesis, several terms were repeatedly used. Definitions of

frequently used terms have been provided below to enhance clarity for the reader.

The definitions of terms include:

Advanced cancer

For patients with solid tumours, advanced cancer is recognised as metastatic

disease (National Cancer Institute, 2018b) and/or when locally advanced disease is

not amenable to cure (American Cancer Society, 2016). There is no clear definition

for advanced disease in the haematology setting (Button, Chan, Chambers, Butler, &

Yates, 2016). However, progressive or relapsed disease is considered a common

characteristic of people with a haematologic malignancy towards the end of life

(Button et al., 2016; LeBlanc & El-Jawahri, 2015). In this study, patients with

advanced cancer were those with metastatic, progressive or relapsed disease and/or

when locally advanced disease was not amenable to cure.

End of life

There is no universal definition for the ‘end of life’. This term was used

throughout this thesis to refer to the last few days to hours of a person’s life

(Australian Commission on Safety and Quality in Health Care, 2015).

End-of-life care

Throughout this thesis, ‘end-of-life care’ refers to the care provided to adults

with advanced cancer who are likely to be within their last days to weeks of life


(Australian Commission on Safety and Quality in Health Care, 2015). This includes

the care provided to people whose death is imminent (i.e. expected to die within a

few hours). End-of-life care refers to the provision of care based on the physical,

emotional, cultural, psychosocial and spiritual needs of the dying person, their family

and/or support network (Australian Commission on Safety and Quality in Health

Care, 2015). The unique needs of the dying person and their family/support network

should be re-assessed on an ongoing basis to determine their goals, values, priorities

and preferences at this time.

Hospice care

Hospice care is defined differently, depending on the geographical location of

where the nursing care is being provided. In the United Kingdom, patients with

advanced cancer may be referred to a hospice at any stage - from the time they are

diagnosed with a terminal illness, to the end of their life (National Health Service,

2014). Some patients attend the hospice healthcare facility to receive support with

symptom management or emotional support and then return home (National Health

Service, 2014). However, the National Cancer Institute states that in the USA, most

insurance plans, including Medicare, require medical certification that the patient is

expected to live for six months or less, prior to the commencement of hospice care

(National Cancer Institute, 2018a). Hospice care in the USA can be provided in the

home, hospice centre, hospital or skilled nursing facility (National Cancer Institute,

2018a). Similarly, hospice care in Australia typically refers to free-standing specialist

institutions or organisations that provide end-of-life care as part of their total

services, such as hospitals or home-based hospice care services.

Integration

There is currently no global consensus on the meaning of ‘integration’ (Hui et

al., 2015). In this study, ‘integration’ refers to the degree of collaboration between

cancer and SPCS (Hui et al., 2015). Clinical, administration, research and education

factors all contribute to the level of integration between cancer and SPCS (Hui et al.,

2015). Specific indicators of integration between services include the availability,

type, acceptance criteria of and geographical proximity to SPCS (Hui et al., 2015).


Other clinical and education indicators include: the practice of routine symptom

screening; adoption of referral practice guidelines; provision of a palliative care

service embedded within cancer care services; collaboration between teams;

physician competence in palliative care; and an oncology program that prioritises

junior physician rotation in SPCS (Hui et al., 2015). Research activity in palliative

care, participation in advocacy or public awareness about palliative care, adequate

organisation funding and leadership support for palliative care are also considered

indicators of integration with cancer services (Hui et al., 2015). Throughout this

thesis, the level of integration was measured using the indicators of integration

(clinical, administration, research and education factors) as defined by Hui et al.

(2015).

Nursing Advocacy

In general, nursing advocacy refers to any action taken by a nurse to promote

and safeguard the well-being and interests of his/her patients or clients (Choi, 2015).

Examples of nursing advocacy actions include ensuring patients are aware of their

healthcare rights and/or have access to information to make informed healthcare

decisions. Nursing advocacy is a series of behaviours that can be considered across

four stages: (1) assessing the need for patient advocacy, (2) identifying the goals of

patient advocacy, (3) planning and implementing advocacy actions, and (4)

evaluating the outcomes of patient advocacy (Choi, 2015). In this study, nursing

advocacy behaviours that facilitate patient referrals to SPCS were measured using the

Nursing Advocacy in Cancer Care (NACC) questionnaire.

Palliative care

Throughout this study, ‘palliative care’ encompasses the provision of

supportive, needs-based care that aims to maximise comfort, dignity and quality of

life for individuals and their families (World Health Organization, 2017). Palliative

care includes early identification, assessment and treatment of psychosocial, spiritual

or physical distress experienced by patients or their families (World Health

Organization, 2017). Palliative care is provided by healthcare professionals to those


with life-limiting illnesses at any stage of the disease trajectory (World Health

Organization, 2017).

Physician

A person qualified to practise medicine. The terminology and meaning of this

role varies around the world. This term was used throughout this thesis to refer to all

medical doctors.

Referral Behaviours

Throughout this study, ‘referral behaviours’ refers to the act of initiating a

referral to SPCS.

Specialist Palliative Care Services (SPCS)

In this context, SPCS provide direct care to patients who have a life-limiting

illness and complex care needs (Johnson et al., 2008; World Health Organization,

2017). The service composition is variable - it may be uni-disciplinary (i.e., nurses

only) (Johnson et al., 2011) or a multidisciplinary (including nurses, physicians and

sometimes social workers, counsellors, pastoral care or other allied health

professionals) team who have completed specialist palliative care training (Finlay,

2001; Palliative Care Australia, 2016). Members of the team provide palliative care

services, which include symptom management, patient advocacy and facilitating

treatment decision-making and prognostic discussions between the patient, their

family and the healthcare team.

1.7 THESIS OUTLINE

This thesis contains seven chapters. Each chapter focuses on a different stage

of the research process. Chapter One introduces the research question, background,

context and purpose of the study. Definitions of the key concepts are provided, as

well as an outline of the thesis. Chapter Two describes the behaviour change

frameworks that guided the conceptual development of each phase of this research

study. Chapter Three reviews the literature on the factors that influence the referral


decision-making process to SPCS in the acute cancer setting. The integrative review

highlights the knowledge gaps that exist and outlines the implications for research

and clinical practice. Chapter Four describes the methods used in Stage One of this

study to develop a survey instrument to measure the actions taken by cancer nurses

to facilitate referrals to SPCS and the factors that influence these actions. This

chapter also documents the results of Stage One, providing preliminary evidence of

the validity of the survey instrument.

Chapter Five presents the research methodology proposed for Stage Two of

this study and the research questions guiding descriptive, bivariate and multivariable

analysis. This chapter specifically focuses on methodology, research design,

participants, survey instrument, procedure and timeline, analysis, ethics and

limitations for the cross-sectional study. Chapter Six presents the results from Stage

Two of this study. The factors affecting the referral decision-making process to

SPCS in the in-patient setting are reported, as identified by a national survey of

cancer nurses. Chapter Seven describes a comprehensive analysis of the results and

presents an interpretation of the findings of this study. This chapter provides

recommendations for future research, implications for practice, limitations and

conclusions of this study.

Chapter 2: Conceptual Framework 13

Conceptual Framework

2.1 INTRODUCTION

Early referral to SPCS has been shown to significantly improve the quality of

life of those living with advanced cancer. Many studies identify that healthcare

professionals predominantly make referrals to SPCS for care at the end of life,

highlighting a knowledge translation problem. A behaviour change intervention has

the potential to overcome the chasm that exists between evidence and practice in this

field. Due to the limited research in this field and numerous factors that could

influence the referral decision-making process to SPCS, an overarching framework

was needed to inform the research process.

This chapter provides justification for selecting constructs from three

complementary theoretical frameworks (Theoretical Domains Framework (TDF),

Capability Opportunity Motivation–Behaviour (COM-B) model and Behaviour

Change Wheel (BCW)) to inform the conceptual framework that guided all stages of

this study. In this chapter, the challenges associated with facilitating behaviour

change in the healthcare setting were considered by undertaking a critical review of

relevant literature. The key components of the refined TDF, COM-B model and BCW

were defined, and their complementary role to inform the conceptual framework to

guide problem analysis for this study was discussed. Finally, clear justifications were

made to outline why these complementary frameworks were selected to guide the

identification of factors that influence the referral decision-making process to SPCS

for patients with advanced cancer.

2.2 FACILITATING BEHAVIOUR CHANGE IN THE HEALTHCARE SETTING

Changing the behaviours of healthcare professionals is complex (Michie,

Atkins, & West, 2014). To date, behaviour change interventions have had

inconsistent results in improving the translation of evidence into practice (Davis,

Campbell, Hildon, Hobbs, & Michie, 2015; Michie, 2008). While some behaviour

change interventions have had a positive impact at individual and population levels

14 Chapter 2: Conceptual Framework

(Albarracín et al., 2005; Asaria, Chisholm, Mathers, Ezzati, & Beaglehole, 2007;

Forbes, Jepson, & Martin‐Hirsch, 2002; Michie & West, 2013), in many cases the

agents responsible for change were not identified (Michie, 2008). Thus, no ‘gold

standard’ criteria exists to increase the likelihood of designing an effective behaviour

change intervention (Davis et al., 2015).

Some evidence suggests behaviour change interventions founded on theory are

more effective than those based on intuition (Albarracín et al., 2005; Noar &

Zimmerman, 2005). Interventions informed by researcher intuition can fail to

comprehensively address the behaviour of interest, effectively limiting their ability to

design a conceptually coherent solution to the problem at hand (Michie et al., 2005).

Theories in behavioural science have enriched our understanding of behaviour and its

behavioural determinants (Michie et al., 2014). Understanding how and why people

choose to change their behaviours is essential when designing knowledge translation

interventions (Davis et al., 2015; Michie et al., 2014). However, a plethora of

behavioural theories exist, making it difficult to determine which theory is best suited

to guide a behaviour change study (Michie et al., 2005). There is also a lack of

guidance on how to select appropriate behaviour change theories and apply them to

guide intervention design (Michie, 2008). If theories are applied sub-optimally, they

can limit the parameters for problem analysis, affect intervention design and restrict

intervention evaluation (Davis et al., 2015).

In their attempt to make behaviour change theories more accessible to

clinicians and researchers, Michie et al. (2011) evaluated 19 existing behaviour

change frameworks for their comprehensiveness, conceptual coherence and whether

a connection existed with an overarching model of behaviour. None of the existing

frameworks covered all intervention functions and the majority lacked conceptual

coherence (Michie et al., 2011). The review highlighted the need for a framework

that provided a comprehensive, systematic, theory-driven approach to each step of

designing a behaviour change intervention, including implementation (Michie et al.,

2011). Thus, Michie et al. (2011) developed the BCW to provide a stepwise approach

to applying theory from problem analysis to intervention implementation.


2.3 THE BEHAVIOUR CHANGE WHEEL (BCW)

The BCW has three layers: the innermost layer is the behaviour of interest and

its interacting components (known as the COM-B model); the middle layer is made

up of nine intervention functions; and the outermost layer consists of seven types of

policies that can be selected to instigate change (Michie et al., 2011). The COM-B

model divides into six components: capability is made up of psychological and

physical capability; opportunity comprises of social and physical opportunity;

motivation consists of reflective and automatic motivation (Cane, O’Connor, &

Michie, 2012). Figure 2-1 shows the BCW.

Figure 2-1. The BCW.

From “The behaviour change wheel: A new method for characterising and designing behaviour change interventions,” by Michie, et al., 2011, Implementation Science, 6, p. 1-11. Copyright [2011] by BioMed Central Ltd. Reproduced with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).

At its centre lies the refined TDF domains linked to the COM-B components

(refer to Table 2.1). The refined TDF integrates numerous behaviour change theories


to guide behavioural analysis and intervention design (Cane et al., 2012). Together,

the refined TDF, COM-B model and BCW provide a complementary approach for

analysing behaviour and designing a targeted behaviour change intervention (Cane et

al., 2012; Michie et al., 2011). These complementary frameworks are not formulas

for effective behaviour change; rather they provide a method for examining current

understanding of a behaviour and expand on that understanding to develop a

contextually-bound intervention (Michie et al., 2014). Table 2.1 shows the refined

TDF domains linked to the COM-B components.

Table 2.1.

The 14 domains of the refined TDF linked to the components of the COM-B model

COM-B components TDF domains

Capability Psychological Knowledge

Cognitive and Interpersonal Skills

Memory, Attention and Decision Processes

Behaviour Regulation

Physical Physical Skills

Opportunity Social Social Influences

Physical Environmental Context and Resources

Motivation Reflective Social/Professional Role & Identity

Beliefs about Capabilities

Optimism

Beliefs about Consequences

Intentions

Goals

Automatic Reinforcement

Emotion

From “Validation of the theoretical domains framework for use in behaviour change and implementation research,” by J. Cane, D. O’Connor, and S. Michie, 2012, Implementation Science, 7, p. 15. Copyright [2012] by BioMed Central Ltd. Reprinted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).

The complex nature of the behaviours related to the referral decision-making

process to SPCS requires a multifaceted, stepwise approach from problem analysis to

intervention design. The refined TDF (Cane et al., 2012), COM-B model and BCW

(Michie et al., 2011) were chosen as they provide complementary frameworks that


are relevant to the purposes of this study. The refined TDF (Cane et al., 2012) was

selected to guide problem analysis, due to its comprehensive approach to

understanding complex behaviours. The multiple elements of the refined TDF were

subsequently mapped by Cane et al. (2012) against higher level domains that

provided a broader, more parsimonious categorisation of factors that are likely to

influence behaviour change (refer to Table 2.1). Cane et al. (2012) named this

categorisation the COM-B model. The COM-B model informed the development of

the BCW (Michie et al., 2011), resulting in a new approach to inform the design of

behaviour change interventions. The following section outlines the rationale for a

behaviour change theoretical approach in the context of understanding referral

practices and provides a critical appraisal of the refined TDF, COM-B model and

BCW (Cane et al., 2012; Michie et al., 2014; Michie et al., 2011).

The refined TDF incorporates 14 domains and 84 theoretical constructs to

comprehensively assess any behaviour and its potential behavioural determinants

(Cane et al., 2012). The refined TDF has several strengths (Cane et al., 2012). Firstly,

it has been used to assess implementation problems across several healthcare settings

(Atkins & Michie, 2013; Fuller et al., 2014; Huijg et al., 2013; Johnston, Young,

Grimmer, Antic, & Frith, 2013). Secondly, this validated consensus-driven

framework integrates a broad range of behaviour change theories to ensure a

multifaceted systematic approach to problem analysis (Cane et al., 2012; Michie et

al., 2005). Thirdly, the framework promotes the identification of the beliefs of

individuals, which can indicate key motivators of behaviour change (Cane et al.,

2012). This framework is also evidence-based, as it has incorporated

recommendations from psychological research on behaviour change (Abraham,

Kelly, West, & Michie, 2009; Michie et al., 2005; NICE, 2007).

Nevertheless, the refined TDF is limited by the constructs upon which it is built

(Cane et al., 2012). The constructs of the refined TDF were based on the original

TDF, which were extensive but do not provide coverage of all behaviour change

theories (Cane et al., 2012). In addition, a number of theoretical constructs were

repeated across more than one domain (Cane et al., 2012). Although these constructs

were relevant to their assigned domains, such repetition could make it difficult to

apply the refined TDF during data analysis.


Despite these limitations, the refined TDF is designed to guide the first steps

towards problem analysis and designing a behaviour change intervention (Michie et

al., 2014). The COM-B model complements the TDF-guided behavioural analysis, as

it helps to identify how capability, opportunity and motivation interact together to

generate behaviour (Michie et al., 2011). Together, the COM-B model and refined

TDF can be applied to identify which domains are likely to influence behaviour

change in context (Cane et al., 2012; Michie et al., 2011). The BCW links the

outcomes of this behavioural analysis to relevant intervention functions (such as

education and training) and policy categories (such as guidelines and service

provision) to ensure the intervention design responds to the behavioural determinants

identified (Michie et al., 2014; Michie et al., 2011). The COM-B model makes the

best use of the evidence available. However, it is not a substitute for a detailed

understanding of the target behaviour (Michie et al., 2011). The COM-B model has

been applied successfully to analyse behaviours associated with health assessments

for young children (Alexander, Brijnath, & Mazza, 2014) and medication adherence

(Jackson, Eliasson, Barber, & Weinman, 2014), but not yet in the context of the acute

cancer care setting. Each of the TDF domains sits within the COM-B model,

collectively demonstrating how capability, opportunity and motivation interact

together to generate behaviour.

Further studies are needed to pilot test the feasibility of using the COM-B

model to guide the conceptualisation of the target behaviour and its behavioural

determinants within the healthcare setting (Michie et al., 2011). Such evaluations

would help determine whether this method is useful to healthcare professionals and

researchers in different contexts. Due to a limited number of studies (Mummah,

Mathur, King, Gardner, & Sutton, 2016; Sinnott et al., 2015), it is unknown whether

the COM-B model is able to effectively describe a range of healthcare professional

behaviours in various contexts. Furthermore, it remains to be seen whether this

model informs the design of more effective behaviour change interventions than

those based on intuition.

The BCW has several strengths. The BCW was informed by a literature review

(Michie et al., 2011) and addresses the need for a framework that systematically

integrates relevant theories and cohesively links each step in intervention design. The

BCW has been applied by two behaviour change experts (Michie et al., 2011) to


characterise two health-related behaviours (NICE, 2006; UK Department of Health,

2010) with substantial inter-rater agreement. Pilot studies (Mummah et al., 2016;

Sinnott et al., 2015) have also found BCW-driven interventions were acceptable,

user-friendly and useful for addressing complex problems in the clinical setting.

Nevertheless, the BCW has some limitations. To date, the BCW has undergone

limited feasibility testing to determine its acceptability to healthcare professionals

and researchers (Mummah et al., 2016; Sinnott et al., 2015). It is unknown whether

this framework can guide the development of effective interventions for the acute

cancer care setting. Furthermore, the content of the BCW was based solely on the

findings of one systematic review of behaviour change frameworks and/or

intervention functions (Michie et al., 2011). It is possible this review inadvertently

missed key frameworks, potentially restricting the conceptualisation of the

framework and its application within practice (Michie et al., 2011). Similarly, a large

number of potential behaviour change interventions exist, and it is impossible to

include them all in the BCW (Michie et al., 2011). The conceptualisation of the BCW

was informed by the judgement of behaviour change experts, who acknowledge that

there is more than one way to classify intervention functions and policies (Michie et

al., 2011).

2.4 APPLYING THE FRAMEWORKS TO THE BEHAVIOUR OF INTEREST

Together, the refined TDF, COM-B model and BCW are designed to be applied

to any behaviour in any setting, at an individual, group or population level (Cane et

al., 2012; Michie et al., 2014). In this study, the behaviours of interest are the referral

behaviours of healthcare professionals that contribute to the referral decision-making

process to SPCS for hospitalised patients with advanced cancer. These behaviours

exist within a system where competing or contributing behaviours affect each

another (Barker, Atkins, & de Lusignan, 2016; Michie et al., 2014).

This study focuses on the first step of facilitating behaviour change —

comprehensive problem analysis, guided by the refined TDF and COM-B model.

These two frameworks were simultaneously applied to ensure a comprehensive

approach was employed when describing healthcare professionals’ referral


behaviours in the palliative care referral decision-making process and the factors that

influence these behaviours. The theories underpinning the refined TDF and COM-B

model provided a theoretical understanding of how the referral behaviours were

generated and how clinical, professional and health system factors influence these

behaviours. The BCW provided a rigorous theoretical approach to interpreting the

implications of the results of this study. Future research could explore the next steps

in designing a behaviour change intervention using the BCW, such as selecting the

target behaviour contributing to the behavioural problem and designing an

intervention (Michie et al., 2014).

2.5 CONCLUSION

The challenges of facilitating behaviour change within the healthcare setting

have been explored. The need for a behaviour change framework to guide the

development of this study has been discussed. The refined TDF, COM-B model and

BCW were selected to guide the evaluation of the factors that influence the referral

decision-making process to SPCS in the acute cancer setting.

Chapter 3: Integrative Review 21

Integrative Review

3.1 INTRODUCTION

In this chapter, an integrative review of the literature on the clinical,

professional and health system factors that influence referrals to SPCS in the acute

cancer setting is presented. To understand the behaviour in context, the COM-B

model linked to the refined TDF domains was used as an organising framework to

present the evidence on the referral decision-making process to SPCS. Each

component of the COM-B model and domain of the refined TDF were defined and

considered in the context of the integrative review findings to inform behavioural

analysis. By seeking to understand factors influencing the referral decision-making

process, researchers will be able to design targeted interventions to promote early

referrals to SPCS.

3.2 AIMS

The purpose of this review was to identify the clinical, professional and health

system factors that influence the decision-making process for a referral to be made to

SPCS for hospitalised patients with advanced cancer. An integrative review was

conducted to provide a comprehensive understanding of the factors that influence

key stakeholders involved in the referral decision-making process.

3.3 METHODS

3.3.1 Search strategies & selection criteria

Papers describing clinical, professional or health system factors influencing the

palliative care referral decision-making process for healthcare professionals,

hospitalised patients with advanced cancer, carers and/or families (> 50% sample

size) were sought. Medical subject headings and search terms (refer to Table 3.1)

were used to comprehensively search the following electronic databases: CINAHL®,

PubMed, The Cochrane Library, PsycINFO and Embase. Only peer-reviewed,

primary research papers published in English between 2004–July 2017 were

22 Chapter 3: Integrative Review

included. Papers that described patient referrals to palliative care units (> 50%

sample size) or factors/characteristics identified after referral were excluded.

Reference lists of the included articles were hand-searched to identify any additional

relevant papers.

Table 3.1.

The terms used in the search strategy

('advanced cancer' OR oncolog* OR cancer OR neoplasm* OR carcinom* OR tumour* OR tumor* OR malignan* OR 'solid tumour' OR 'solid tumor' OR neuroblastom* OR rhabdomyoscarcom* OR teratom* OR hepatom* OR hepatoblastom* OR medullobastom* OR retinoblastom* OR meningioma* OR gliom* OR 'terminal cancer' OR 'oncology nursing' OR 'cancer care nursing' OR 'cancer nursing' OR Onco-hematological OR ‘metastatic cancer’ OR haemat* OR hemat* OR leukem* OR leukaem* OR lymphoma) AND (factor* OR clinical OR professional OR health system OR determinant* OR component* OR aspect* OR circumstance* OR element* OR agent* OR ‘ethical dilemmas’ OR barrier* OR facilitator*) AND (acute OR hospital OR inpatient OR ward) AND (decision-making OR decision* OR judgement OR determination) AND (appropriate OR suitable OR timely OR opportune OR well-timed OR prompt OR auspicious OR favourable OR fitting OR befitting OR deserved OR acceptable OR justifiable OR rational OR reasonable OR felicitous) AND (refer* OR ‘palliative care referral*’ OR ‘oncology referral*’ OR ‘transfer of care’ OR consultation OR consult* OR utiliz* OR utilis* OR access) AND (‘specialist palliative care services’ OR ‘palliative care’ OR palliat* OR ‘palliative treatment’ OR ‘supportive care’ OR end-of-life OR ‘end of life’ OR ‘terminally ill’ OR dying OR end-stage OR ‘final phase’ OR incurable OR ‘care of the dying’ OR ‘palliative care consult*’ OR ‘palliative care nursing’ OR hospice OR ‘terminal care’ OR ‘integration of palliative care’)

3.3.2 Quality appraisal & data extraction

Quality assessment was performed using QualSyst, a standardised, validated

quality appraisal method with good inter-rater reliability scores (Kmet, Lee, & Cook,

2004; Lee et al., 2005). Two independent reviewers assessed the quality and

eligibility of all included studies. Reviewers resolved disagreements through

discussion and consensus or by employing a third independent reviewer to determine

the outcome. Papers that received an average score of > 0.75 (quality appraisal score

range: 0–1.0) were considered high quality. Data extraction was guided by the

Matrix Method© (Garrard, 2013).


3.3.3 Data synthesis

Qualitative findings were synthesised using the Flow Model (Miles &

Huberman, 1994) and quantitative findings were synthesised using the review Matrix

Method© (Garrard, 2013). Mixed research synthesis was performed using segregated

design (Sandelowski, Voils, & Barroso, 2006), following the steps of basic

convergent meta-integration (Frantzen & Fetters, 2016). The development of this

review was guided by an integrative review framework (Whittemore & Knafl, 2005)

and complementary frameworks on behaviour change—the refined TDF (Cane et al.,

2012); COM-B model; and BCW (Michie et al., 2011).

3.4 OUTCOMES OF THE LITERATURE SEARCH

The literature review screening process was conducted and reported in

accordance with the Preferred Reporting Items for Systematic Reviews and Meta-

Analyses (PRISMA) (Moher et al., 2015) (refer to Appendix A). After removing

duplicate records, a total of 4341 abstracts were screened, of which 91 full-text

articles were assessed for eligibility. Seventy-nine papers did not meet the selection

criteria and were excluded. Of the 12 included articles, four were qualitative studies

(Bakitas et al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006; Morikawa,

Shirai, Ochiai, & Miyagawa, 2016), seven were quantitative studies (Charalambous,

Pallis, Hasan, & O'Brien, 2014; Fadul et al., 2009; Hong, Ng, Poulose, Lin, & Goh,

2011; Johnson et al., 2008; Penrod et al., 2017; C. Smith et al., 2012; Wentlandt et

al., 2012) and one was a mixed methods study (Ward et al., 2009). None of the

included studies presented the perspectives of hospitalised patients with advanced

cancer, their carers or families. All qualitative studies were interview-based studies.

Seven mixed method/quantitative studies used cross-sectional surveys

(Charalambous et al., 2014; Fadul et al., 2009; Hong et al., 2011; Johnson et al.,

2008; C. Smith et al., 2012; Ward et al., 2009; Wentlandt et al., 2012) and one was a

prospective observational study (Penrod et al., 2017). A summary of study

characteristics is presented in Table 3.2.


Table 3.2.

Review Matrix

Author; year & origin

Study title; nature of evidence &

quality score Aim of the study Setting & sample

Selection criteria; unit of analysis; data collection & analysis methods

Key findings

McGrath and Holewa (2006) Australia.

Missed opportunities: Nursing insights on end-of-life care for haematology patients. Qualitative. Open-ended interviews of experienced haematology nurses. Quality Appraisal Score: 0.78

Primary: to identify haematology nurses' points-of-view on end-of-life care. Secondary: to describe the factors that are essential for inclusion in a terminal care model of care for haematology patients.

• Setting: Nine public & private hospitals from three Australian States.

• Sample: 19 experienced haematology nurses working in the acute setting.

• Sampling method: Not

described.

• No inclusion or exclusion criteria listed.

• Unit of analysis: ‘Haematology patients do die in the curative system’ (overall theme).

• Data collection method: Audio-recorded interviews using techniques

such as probing; paraphrasing or silence were employed. Descriptive phenomenology was used to guide nurse interviews, to aid the development of a model for end-of-life care for haematology patients.

• Data analysis method: Thematic analysis.

• Focus on curative treatment inhibited patient access to SPCS in acute haematology setting.

Johnson et al. (2008) Australia.

Cancer specialists' palliative care referral practices and perceptions: results of a national survey. Quantitative. Cross-sectional survey. Quality Appraisal Score: 0.98

To explore cancer specialists’: • current referral behaviour • approach • viewpoint • factors that

promoted/inhibited referral to SPCS

• Setting & sample: 699 cancer specialists practicing in Australia.

• Sampling method: Participants selected from professional organization websites.

• Inclusion criteria: Australian doctors who spend a substantial part of their practice caring for people living with advanced cancer (oncologists, haematologists, respiratory physicians & CRC surgeons).

• Unit of analysis: Survey respondent (cancer specialist). • Data collection method:

Anonymous postal survey using validated survey instrument. • Data analysis method: Mean; SD; and CIs for continuous data. For

categorical data, frequencies and percentages. Pearson’s chi squared statistic and Fisher’s exact for univariate analysis. Backwards stepwise multiple logistic regression analysis was used to determine independent predictors of referring majority of advanced cancer patients to SPCS in last year.

• Most cancer specialists had positive attitudes towards SPCS, yet only 25% referred >80%of their patients with advanced cancer to SPCS.

Fadul et al. (2009) USA.

Supportive versus palliative care: What's in a name? Quantitative. Cross-sectional web-based survey. Quality Appraisal Score: 0.97

To determine: (i) the perceived effect of the

name palliative care versus supportive care on referral timing and referral rates to the service;

(ii) If there was a relationship between the demographic factors of medical oncologists and mid-level providers and their perspective on both service names and subsequent consequences for practice.

• Setting & sample: 140 medical oncologists and midlevel providers (advanced practice nurses and physician assistants) practicing at a cancer centre in Texas.

• Sampling method: Random sample generated using statistics software.

• Inclusion criteria: Medical oncologist or midlevel provider; provides hands-on care to cancer patients at least one day a week; makes referrals to SPCS or takes part in decision-making process.

• Unit of analysis: Medical oncologist or midlevel provider. • Data collection method: Web-based survey using validated survey

instrument.

• Data analysis method: Descriptive statistics.

• There were no statistically significant differences in attitudes when oncologists and midlevel providers considered the likelihood of referring patients at the end of life to a supportive care or palliative care service.




quality score

Aim of the study Setting & sample Selection criteria; unit of analysis; data collection & analysis methods

Key findings

Ward et al. (2009) Australia.

Collaborating or co-existing: a survey of attitudes of medical oncologists toward specialist palliative care. Mixed methods. Cross-sectional survey. Quality Appraisal Score: 0.97

Investigating the attitudes and perspectives (quantitative data) of Australian medical oncologists and trainees in medical oncology, towards SPCS.

Secondary question (qualitative data): how could cooperation be enhanced between medical oncologists & SPCS?

• Setting & sample: 115 medical oncologists and trainees practicing in Australia

• Sampling method:

members of MOGA were invited via email.

• Inclusion criteria: MOGA member; working clinically in medical oncology.

• Unit of analysis: Medical oncology specialist/trainee.

• Data collection method: Web-based survey. Final survey instrument informed by content validity and pilot testing.

• Data analysis method:

Descriptive statistics, attitude indices and thematic analysis.

• Oncologists and medical oncology trainees considered patient unwillingness (60.9%), family opposition (67%), in-patient bed availability (34.8%) and insufficient SPCS staff (30.4%) as major barriers to SPCS collaboration.

Hong et al. (2011) Singapore.

Attitude of doctors in an Asian oncology centre towards referral to palliative care. Quantitative. Cross-sectional survey. Quality Appraisal Score: 0.85

What is the understanding, attitudes and behaviours of doctors towards palliative care?

• Setting & sample: 51 physicians practicing at a Government-subsidized cancer centre (majority of Singapore’s oncologists work here).

• Sampling method: Departmental secretaries distributed and collected surveys from physicians.

• Inclusion criteria: Must provide hands-on care to cancer patients.

• Exclusion criteria: Physicians studying outside of cancer centre. • Unit of analysis: Physician. • Data collection method: Anonymous survey, distributed by departmental

secretaries by hand. Face validity informed final survey instrument. • Data analysis method: Descriptive statistics expressed as cross-

tabulations, chi-square, and Fisher’s exact test were used. Logistical regression analyses.

• 95.8% of medical oncologists reported discussing palliative care referral with patients during the previous three months.

• 97.9% felt confident engaging patients in a palliative care discussion.

Johnson et al. (2011) Australia.

Australian general practitioners' and oncology specialists' perceptions of barriers and facilitators of access to specialist palliative care services. Qualitative. Semi-structured telephone interviews. Quality Appraisal Score: 0.78

What are the barriers to SPCS referral? What the facilitators for SPCS referral?

• Setting & sample: 40 GP and oncology specialists (medical oncology, radiation oncology, haematologists, surgical/gynae-oncologists, respiratory physicians and colorectal surgeons) practicing in Australia.


Identified sample through professional websites, organizations or professional contacts of advisory group. Mailed invitation with follow up phone call to arrange interview.

• Inclusion criteria: GP or oncology specialist who provides care to patients with advanced cancer. Unit of analysis: Disease and treatment characteristics; psychosocial characteristics; patient-provider communication and relationships; health services & resources; health professionals’ skills; timing of access (six themes).

• Data collection method: Semi-structured audio-taped telephone interviews; using interview guide.


• Some oncologists and GPs agreed their palliative care knowledge, capabilities to honestly communicate about disease progression and prognosis, access to and proximity of SPCS influenced the referral decision-making process.






Key findings

C. Smith et al. (2012) USA.

Lung cancer physicians’ referral practices for palliative care consultation. Quantitative. Cross-sectional survey. Quality Appraisal Score: 0.87

What are the factors influencing the physician decision-making process to refer lung cancer patients to PC?

• Setting: 5 medical centres with established palliative care services in NYC.

• Sample: 155 lung cancer physicians

• Sampling method: Not

clearly described. Hospital staff lists were used to identify physicians.

• Inclusion criteria: Physicians who were known to regularly manage care of patients with lung cancer.

• Unit of analysis: Attending physicians and fellows caring for lung cancer patients. Data collection method: Self-administered survey. Pilot tested survey; no validity testing reported.

• Data analysis method: Logistical regression and multiple regression. Compared physician groups who referred > 25% VS < 25% of their patients to SPCS.

• Lung cancer physicians were 3.07 times (95% CI 1.56–6.02) more likely to refer if they perceived SPCS had more time available to manage complex symptoms.

Wentlandt et al. (2012) Canada.

Referral practices of oncologists to specialized palliative care. Quantitative. Cross-sectional survey. Quality Appraisal Score: 1.00

What are the referral practices of oncologists to SPCS? What are the participant characteristics, factors and perspectives of oncologists in relation to late VS timely SPCS referral?

• Setting & sample: 603 oncologists practicing in Canada.

• Sampling method: All CAMO, CARO and CSSO members were invited to participate in survey.

• Inclusion criteria: CAMO; CARO and CSSO members (oncologist groups). Unit of analysis: Oncologist.

• Data collection method: Anonymous survey; sent via email and mail. Coffee voucher incentive provided. Survey underwent pilot testing, but validity testing was reported.

• Data analysis method: Calculated referral frequency index; descriptive statistics; categorical data; multiple linear and logistic regression.

• Oncologists were more likely to refer at diagnosis or during cancer treatment if they were content with SPCS availability and acceptance criteria (p < 0.001).

Bakitas et al. (2013) USA.

Oncologists’ perspectives on concurrent palliative care in a National Cancer Institute-designated comprehensive cancer center. Qualitative (RCT supplementary study). Semi-structured interviews. Quality Appraisal score: 0.93

To measure the effect of the ENABLE II RCT on oncology clinicians’ care provision and referral practices for patients with advanced cancer. What is your understanding of what palliative care entails?

• Setting: Two large healthcare centres in New Hampshire and Vermont.

• Sample: 38 oncology

clinicians (physicians and nurse practitioners) were recruited; 35 were interviewed.

• Sampling method: All

oncology clinicians at the study sites were invited to participate in the interviews.

• Inclusion criteria: Advanced, metastatic or recurrent cancer; refractory disease (haematology patients); receiving active anticancer treatment, irrespective of intent; prognosis two years or less. Unit of analysis: Themes identified across three areas: oncologists’ self-assessment of advanced cancer patient care (treating the whole patient; quality versus quantity of life focus; some patients just want to fight; helping with transitions – timing is everything); oncology clinician views on palliative care and ENABLE II RCT (refer early and often; referral challenges – “palliative” equals hospice, “heme patients are different”; palliative care consultant to co-manager; palliative care “shares the load”); ENABLE facilitated integration.

• Data collection method: Audio-recorded interviews using interview guide. Interview guide was pilot tested and developed based on literature review and expertise of oncology physician and nurse practitioner.


• Majority of oncologists and nurse practitioners viewed the concurrent model of care between SPCS and primary treating team favourably, based on their experiences during the ENABLE II RCT.

• After this study, most oncologists and nurse practices continue to provide this model of care as part of their standard practice.


Note. SPCS = Specialist Palliative Care Service; SD = standard deviation; CI = confidence interval; CRC = Colorectal Cancer; USA = United States of America; MOGA = Medical Oncology Group of Australia; GP = general practitioner; PC = Palliative Care; NYC = New York City; CAMO = Canadian Association of Medical Oncologists; CARO = Canadian Association of Radiation Oncologists; CSSO = Canadian Society of Surgical Oncology; RCT = randomised control trial; ENABLE II RCT = Educate, Nurture, Advise, Before Life Ends II randomised clinical trial; EORTC LCG = European Organization for Research and Treatment of Cancer Lung Cancer Group.





Key findings

Charalambous et al. (2014) Europe.

Attitudes and referral patterns of lung cancer specialists in Europe to specialized palliative care and the practice of early palliative care. Quantitative. Online cross-sectional survey. Quality Appraisal Score: 0.84

To examine availability of palliative care (PC) services. What are the attitudes and referral patterns of European Lung cancer specialists towards PC?

• Setting & sample: 50 lung cancer specialists practicing in Europe. .

• Sampling method: Members of the EORTC LCG were asked via email to participate in an on-line survey.

•

• Inclusion criteria: Membership in EORTC LCG.

• Unit of analysis: Medical/radiation/clinical oncologists; pulmonologists; thoracic surgeons.

• Data collection method: Online survey of membership with two email reminders sent. Survey developed on basis of similar surveys and published literature. No survey validity testing reported.

• Data analysis method: Descriptive statistics; Fisher’s exact test; Chi-squared test. Explored statistics with caution – inadequately powered sample size.

• Only 22% of lung cancer specialists referred during the early stages of disease, despite 64% having a positive attitude towards SPCS.

Morikawa et al. (2016) Japan.

Barriers to the collaboration between hematologists and palliative care teams on relapse or refractory leukemia and malignant lymphoma patients’ care: a qualitative study. Qualitative. Semi-structured interviews. Quality Appraisal Score: 0.98

To assess haematologists’ and palliative care physicians’ perceptions of SPCS and identify barriers for collaboration between both teams.

• Setting & sample: 11 haematologists and 10 palliative care physicians practising in hospital/cancer centre, Japan.


Snowball sampling technique was used to identify haematologists and palliative care physicians from hospitals that provided these specialities.

• Inclusion criteria: board-certified specialists with a minimum of five years’ experience.

• Unit of analysis: Content identified across three areas: perceptions of the roles of SPCS (e.g., the main role of SPCS is pain management; providing psychological support; coordinating care between patient and medical teams); expectations of the roles of SPCS (e.g., support for patients’ families; providing pain management advice; providing advice on managing patients’ psychological distress); barriers to collaboration between teams (e.g., don’t feel the need to refer; difficult timing of referral).

• Data collection method: Audio-recorded face-to-face interviews were conducted by one researcher.

• Data analysis method: Content analysis.

• Haematologists and palliative care physicians share similar perceptions of the role of SPCS. Haematologists and palliative care physicians agreed it is difficult to refer haematology patients to SPCS when they are receiving curative treatment.

Penrod et al. (2017) USA.

Characteristics of hospitalized cancer patients referred for in-patient palliative care consultation. Quantitative. Prospective, multisite observational study. Quality Appraisal Score: 1.00

Identify hospitalised advanced cancer patient characteristics associated with referral to SPCS.

• Setting & sample: Patients admitted with advanced cancer at five hospitals with well-established SPCS during 2007-2011.

• Sampling method: Admission records were screen for eligible patients and written consent was obtained.

• Inclusion criteria: > 18 years; metastatic cancer, locally advanced cancer or transplant-ineligible lymphoma or myeloma; enrolled in study within 48hrs of admission.

• Exclusion criteria: non-English speaking background; dementia; non-verbal or unresponsive; admitted for routine chemotherapy; died or discharged within 48hrs of admission; previously referred to SPCS.

• Unit of analysis: receipt of referral to SPCS.

• Data collection method: validated instrument used to measure utilization of SPCS by patients with advanced cancer.

• Data analysis method: descriptive statistics; hospital fixed effect

multivariable logistic regression.

• Patients with a high symptom burden and comorbidities on admission were more likely to be referred to SPCS than other cancer patients.


3.5 QUALITY APPRAISAL OUTCOMES

The methodological quality of all included studies was high (refer to Table

3.2). All qualitative papers clearly or partially described the study design, context

and data sampling methods (Bakitas et al., 2013; Johnson et al., 2011; McGrath &

Holewa, 2006; Morikawa et al., 2016). Minor weaknesses of the qualitative studies

included incomplete descriptions of participant characteristics (McGrath & Holewa,

2006), reflexivity of the account provided (Bakitas et al., 2013; Johnson et al., 2011;

McGrath & Holewa, 2006; Morikawa et al., 2016), data collection and analysis

methods (Bakitas et al., 2013; Johnson et al., 2011).

All mixed method and quantitative studies sufficiently described their objective

and study design (Charalambous et al., 2014; Fadul et al., 2009; Hong et al., 2011;

Johnson et al., 2008; Penrod et al., 2017; C. Smith et al., 2012; Wentlandt et al.,

2012). Minor weaknesses of the mixed method and quantitative studies included that

the selected sampling methods were biased towards a specific group (Charalambous

et al., 2014; Fadul et al., 2009; Hong et al., 2011) or only partially described (C.

Smith et al., 2012), and some studies lacked variance estimates (e.g., confidence

intervals, standard errors) for primary or secondary outcomes (Charalambous et al.,

2014; Fadul et al., 2009; Ward et al., 2009). Non-response bias may have influenced

the findings of all survey-based studies (Charalambous et al., 2014; Fadul et al.,

2009; Hong et al., 2011; Johnson et al., 2008; C. Smith et al., 2012; Ward et al.,

2009; Wentlandt et al., 2012). In the Singaporean study (Hong et al., 2011), social

desirability bias was a potential confounder, as the respondents worked in the same

hospital as one of the study investigators.

3.6 FINDINGS

The integrative review findings were categorised using the COM-B model,

linked to the 14 domains of the refined TDF to highlight how healthcare

professionals’ capabilities, opportunities, and motivations influenced their referral

behaviours (Michie et al., 2011). Appendix B presents an analysis of all factors

identified in this review that influence healthcare professionals’ referral behaviours

towards SPCS. To reduce repetition of findings, overlapping constructs (identity;


group identity; beliefs; consequents; professional confidence; action planning)

between the domains of the refined TDF were only presented once (Cane et al.,

2012). For the purposes of this review, findings overlapping the domains of

knowledge, cognitive and interpersonal skills; and social influences and

environmental context and resources were presented together.

3.6.1 PSYCHOLOGICAL CAPABILITY

Psychological capacity refers to the individual’s ability to engage in a specific

activity (Michie et al., 2011). In this section, evidence of whether healthcare

professionals have the necessary knowledge, memory, attention, cognitive and

interpersonal skills (Michie et al., 2014; Michie et al., 2011) to engage in the referral

decision-making process and initiate referrals to SPCS where needed is examined.

Knowledge, cognitive & interpersonal skills

Knowledge is defined as an individual being aware that something exists (Cane

et al., 2012). Cognitive skills refer to an individual’s ability to rationalise information

when performing tasks, whereas interpersonal skills describe an individual’s

capacity to maintain effective relationships, demonstrate cooperation, flexibility and

social responsibility (Cane et al., 2012). In the context of this review, the knowledge

and skills domains refer to how healthcare professionals’ palliative care knowledge,

competence and confidence in performing comprehensive needs-based assessments,

symptom management, and establishing therapeutic relationships affect their referral

behaviours (Cane et al., 2012).

Palliative care expertise can be acquired through education and training. Two

included studies (Johnson et al., 2011; Wentlandt et al., 2012) examined whether

palliative care training of junior physicians facilitated referrals to SPCS. A Canadian

survey (n = 603) found oncologists who completed a palliative care rotation (n =

285) were twice as likely to refer a patient to palliative care services prior to

chemotherapy, rather than during treatment (Wentlandt et al., 2012). The results of

an Australian qualitative study (n = 40) (Johnson et al., 2011) provided a possible

explanation for these findings. Physicians with palliative care training (or experience

providing palliative care) (n = 22) described the concept of palliative care more


holistically, suggesting that training can lead to an improved understanding of the

principles of palliative care (Johnson et al., 2011). Nevertheless, a significant

knowledge gap remains as none of the included studies examined how palliative care

knowledge, knowledge of the task environment, interpersonal skills, ability, skill

assessment, practice or healthcare professional competence performing related tasks

affected referral behaviours (Cane et al., 2012). Overall, limited evidence indicates

previous palliative care training can lead to an improved understanding of the

principles of palliative care (Johnson et al., 2011; Wentlandt et al., 2012), although

there is no direct evidence that such understanding leads to more appropriate

referrals.

Memory, attention and decision processes

Memory, attention and decision processes refer to the ability of individuals to

retain information, exclusively focus on something and choose between two or more

alternatives (Cane et al., 2012). In the context of this review, this domain describes to

the ability of healthcare professionals to exclusively focus on relevant referral cues

and choose between two or more pathways of care (Cane et al., 2012). To date, little

is known about how and why healthcare professionals decide to refer to SPCS.

In seven studies, healthcare professionals’ recognition of advanced disease

(Bakitas et al., 2013; Johnson et al., 2008; Johnson et al., 2011; C. Smith et al.,

2012); need for symptom management (Johnson et al., 2008; Johnson et al., 2011;

Penrod et al., 2017; Wentlandt et al., 2012); patient and family support (Bakitas et

al., 2013; Johnson et al., 2011; Wentlandt et al., 2012); palliative treatment (Bakitas

et al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006) and/or patient readiness

(Bakitas et al., 2013; Johnson et al., 2011) facilitated referrals to SPCS. Similarly, a

prospective multisite observational study (n = 3027) found significant predictors for

referrals to SPCS included patients who were taking analgesia, anti-emetics or

aperients, who needed assistance with transfers from bed, and/or who had

comorbidities on admission (Penrod et al., 2017). A qualitative study (n = 40)

(Johnson et al., 2011) provided an alternative perspective, as several physicians

recognised the importance of providing psychosocial support yet rarely made

referrals to SPCS for this reason. These findings highlight the complexity of the


referral decision-making process, indicating other factors apart from clinical cues

influence referral decisions (Johnson et al., 2011).

Even when a rationale for making a referral had been established, healthcare

professionals frequently expressed uncertainty about the optimal time to refer

patients to SPCS (Bakitas et al., 2013; Johnson et al., 2008; Johnson et al., 2011;

Morikawa et al., 2016; Ward et al., 2009; Wentlandt et al., 2012). Evidence about the

influence of this domain is limited in the literature, which did not measure how the

three theoretical constructs (memory; attention control; and cognitive

overload/tiredness) affected the referral behaviours of healthcare professionals (Cane

et al., 2012). Overall, these findings highlight how healthcare professionals can be

conflicted by the need to act on clinical referral cues when they are uncertain about

the consequences of the referral (Bakitas et al., 2013; Johnson et al., 2008; Johnson

et al., 2011; Ward et al., 2009; Wentlandt et al., 2012).

3.6.2 SOCIAL & PHYSICAL OPPORTUNITY

Social and physical opportunity is defined as all the external factors that make

it possible to do something (Michie et al., 2011). Specifically, it examines whether

social influences, resources and the environmental context (Michie et al., 2014)

make it possible for healthcare professionals to initiate patient referrals to SPCS

where needed.

Social influences & environmental context & resources

Social influences refer to interpersonal processes (such as power, hierarchy,

group norms and social interactions) that can affect the thoughts, feelings or

behaviours of individuals (Cane et al., 2012). The environmental context is any

aspect of the environment that influences an individual’s skill development,

independence, competence and adaptive behaviours (Cane et al., 2012). For the

purposes of this review, social influences and environmental context and resources

describe how interpersonal processes between healthcare professionals and the

setting (Michie et al., 2011) affect the referral behaviours of healthcare professionals.

Eight studies identified the degree of integration (refer to Section 1.6 for study

definition) between services and/or time constraints affected referral behaviours


(Bakitas et al., 2013; Charalambous et al., 2014; Hong et al., 2011; Johnson et al.,

2008; Johnson et al., 2011; Morikawa et al.; Ward et al., 2009; Wentlandt et al.,

2012). In an American study (n = 35) (Bakitas et al., 2013), SPCS provided a range

of collaborative services (attendance at tumour stream meetings; co-management;

and consult services). The initiation of these services was associated with providing a

well-integrated oncology palliative care environment that promoted referrals to the

service (Bakitas et al., 2013). On the other hand, an Australian study (n = 19)

(McGrath & Holewa, 2006) described a poorly integrated haematology-palliative

care environment, where a curative-driven organisational culture and lack of

structured collaborative opportunities blocked referrals to SPCS. Similarly, some

Australian cancer specialists (Johnson et al., 2011) report limited communication and

interaction with SPCS resulted in poor integration between services and missed

opportunities for referral. Overall, these studies indicate the degree of integration

between oncology/haematology and palliative care services inhibits or promotes

referrals to SPCS (Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2011;

McGrath & Holewa, 2006; Morikawa et al.).

Three elements of integration were frequently reported to influence referral

behaviours: availability, resources and access to SPCS (Bakitas et al., 2013; Hong et

al., 2011; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006;

Morikawa et al.; Ward et al., 2009; Wentlandt et al., 2012). In an Australian study (n

= 115) (Ward et al., 2009), 30% of oncologists agreed insufficient SPCS staff

resources was a major barrier to referral, which was supported by the findings of two

qualitative studies (Johnson et al., 2011; Morikawa et al.). A Canadian study (n =

603) (Wentlandt et al., 2012) found SPCS acceptance of patients receiving

chemotherapy, good availability and a wide range of SPCS were statistically

significant predictors of higher referrals to the service. Similarly, an American

survey (n = 155) (C. Smith et al., 2012) found lung cancer physicians were 3.07

times (95% CI 1.56–6.02) more likely to refer if they perceived SPCS had more time

available to manage complex symptoms. This evidence suggests that access to a

comprehensive, well-resourced SPCS that accepted patients receiving chemotherapy

promoted referral (Charalambous et al., 2014; Hong et al., 2011; Johnson et al.,

2008; Wentlandt et al., 2012).


The service name is another aspect of the environment identified in some

studies as influencing referral behaviours (Fadul et al., 2009; Wentlandt et al., 2012).

An American study (n = 140) (Fadul et al., 2009) found oncologists and midlevel

providers were more likely to refer patients receiving advanced cancer treatments to

a service called supportive care (125, 89% vs 96, 69%; p < .0001) rather than

palliative care. However, service name had no impact on the likelihood of referrals

at the end of life (Fadul et al., 2009). To date, no consensus has been reached

regarding the most appropriate service name to promote referrals to SPCS (Fadul et

al., 2009), although these findings highlight the potential for health professional

attitudes, beliefs and perceptions about palliative care to influence their referral

behaviour.

Group norms regarding referral behaviours were markedly different in the

haematology and oncology-based settings (Bakitas et al., 2013; Johnson et al., 2011;

McGrath & Holewa, 2006). In an Australian study (n = 19), haematologists were

rarely observed to refer patients to SPCS (McGrath & Holewa, 2006). In contrast, an

American (n = 35) (Bakitas et al., 2013) and an Australian (n = 40) study (Johnson et

al., 2011) found most oncology healthcare professionals increased their palliative

focus as the cancer or complexity of physical symptoms progressed. These social

contexts of practice were affected by the hierarchy of roles within the healthcare

system. For instance, some haematology nurses recognised the need for SPCS

involvement but did not intervene, as they felt powerless to change the situation

(McGrath & Holewa, 2006). In this study, haematologists were viewed as the

primary decision-maker, who often pursued curative treatments irrespective of

patient preferences (McGrath & Holewa, 2006). Similar power imbalances were not

described in studies in the oncology setting (Bakitas et al., 2013; Johnson et al.,

2011). Understanding how social influences and environmental context and

resources affect the referral behaviours of healthcare professionals is limited by the

evidence, which does not examine the following theoretical constructs: social

pressure, social support, group conformity, intergroup conflict, alienation, group

identity, modelling, or salient events/critical incidents (Cane et al., 2012). Overall,

limited evidence (Bakitas et al., 2013; Johnson et al., 2011; McGrath & Holewa,

2006) suggests group norms and power imbalances influence healthcare professional

referral behaviours.


3.6.3 REFLECTIVE MOTIVATION

Reflective motivation is defined as choosing to behave in a particular way after

thinking deeply about something (Michie et al., 2011). It includes an individual’s

social/professional role and identity, beliefs about their capabilities, degree of

optimism, intentions, goals and beliefs about consequences (Michie et al., 2014). In

the context of this review, reflective motivation examines how thoughtful conscious

decisions direct the referral behaviours of healthcare professionals.

Social/professional role & identity

Social/professional role and identity is a consistent set of behaviours and

personal qualities displayed by individuals in society or within the workplace (Cane

et al., 2012). In this review, social/professional role and identity refers to how the

personal qualities, role and identity of healthcare professionals working in the acute

cancer setting affect their referral behaviours (Cane et al., 2012). In all of the studies,

physicians and/or nurse practitioners had the authority to initiate referrals to SPCS

(Bakitas et al., 2013; Charalambous et al., 2014; Fadul et al., 2009; Hong et al., 2011;

Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; C. Smith et al.,

2012; Ward et al., 2009; Wentlandt et al., 2012). The professional role of physicians

was significantly associated with referral practices in two studies (Johnson et al.,

2008; Wentlandt et al., 2012). In a Canadian study (n = 603) (Wentlandt et al., 2012),

early referral was significantly associated with being a radiation or surgical

oncologist. Similarly, an Australian study (n = 699) (Johnson et al., 2008), found

significant predictors of referral included working as a cancer specialist (p = 0.008).

However, the influence of this variable cannot be established, given the lack of

attention to the influence of professional roles in existing studies (Johnson et al.,

2008; Wentlandt et al., 2012).

Three studies (Charalambous et al., 2014; Johnson et al., 2011; Ward et al.,

2009) found a lack of professional boundaries between the treating team and SPCS

discouraged referrals to the service. A European study (Charalambous et al., 2014),

found physician concern about the expertise of SPCS (18%) or interference with the

oncology treatment plan (8%) inhibited referrals to the service. These findings were

supported by a qualitative study (Johnson et al., 2011). Further explanation is


provided by an Australian study (Ward et al., 2009), which found 14% of oncologists

expressed the need for mutual respect and understanding between disciplines (11%

advocated for cross-training) to improve future collaboration. None of the included

studies examined how leadership, organisational commitment, professional or social

identity influenced referral behaviours (Cane et al., 2012). Overall, limited evidence

indicates a lack of clarity about professional boundaries between the treating team

and SPCS inhibited referrals to the service (Charalambous et al., 2014; Johnson et

al., 2011; Ward et al., 2009).

Beliefs about capabilities

Beliefs about capabilities refers to an individual’s acceptance of the reality

about an ability that can be applied to their everyday life (Cane et al., 2012). In the

context of this review, beliefs about capabilities focuses on how healthcare

professionals’ beliefs about their abilities or those of others affects their referral

behaviours (Cane et al., 2012). Specifically, this domain examines how healthcare

professionals’ perception of SPCS, perceived competence in symptom management

and confidence in initiating discussions about prognosis or palliative care affected

their referral behaviours (Cane et al., 2012). An Australian study (n = 699) found

82% of cancer specialists believed SPCS provided superior care, yet only 25%

referred more than three quarters of their patients with advanced cancer to the service

(Johnson et al., 2008). Similarly, another Australian study (n = 115) (Ward et al.,

2009), reported 87% of medical oncologists and trainees agreed palliative care was

central to their practice, yet less than half referred their patients to SPCS. These

findings suggest that referral behaviours are complex and cannot be exclusively

attributed to one factor (Johnson et al., 2008; Ward et al., 2009).

Seven studies (Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2008;

Johnson et al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et al.,

2012) presented findings about how self-perceived competence and confidence

influenced the referral behaviours of healthcare professionals. In an Australia-wide

survey of cancer specialists (n = 699) (Johnson et al., 2008), 48% felt capable of

controlling physical symptoms and were consequently less likely to refer to SPCS.

These findings were supported by a qualitative study (Johnson et al., 2011).

Similarly, an Australian study of medical oncologists and trainees (n = 115) (Ward et


al., 2009) found self-confidence with management of physical (92%) and

psychological symptoms (62%) was associated with 51.3% opting to refer only when

complex care needs escalated. Overall, these studies suggest some healthcare

professionals only consider referral when they no longer feel capable of managing

complex symptoms (Johnson et al., 2008; Johnson et al., 2011; Ward et al., 2009).

A Canadian study found 74% (n = 603) of physicians felt confident initiating

palliative care discussions, which was associated with 84% regularly referring

terminally ill patients to SPCS (Wentlandt et al., 2012). These results were

complemented by three qualitative studies (Bakitas et al., 2013; Johnson et al., 2011;

McGrath & Holewa, 2006) that found self-perceived competence in prognostic

discussions promoted healthcare professionals to introduce and/or refer patients to

SPCS (Bakitas et al., 2013; Johnson et al., 2011). This finding is complemented by

other studies that found healthcare professionals who expressed difficulty discussing

death, dying and/or prognostic information with patients were less likely to refer

(Johnson et al., 2011; McGrath & Holewa, 2006). The influence of this domain on

the referral behaviours of healthcare professionals is limited by the included studies,

which did not examine the effects of self-efficacy, perceived behavioural control,

self-esteem and empowerment (Cane et al., 2012). Overall, healthcare professionals’

degree of self-perceived competence and/or confidence in symptom management and

palliative care discussions directly influenced referral behaviours (Bakitas et al.,

2013; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; Ward et

al., 2009; Wentlandt et al., 2012).

Optimism

Optimism refers to an individual’s degree of confidence that desired goals will

be fulfilled (Cane et al., 2012). In the context of this review, optimism includes

healthcare professionals’ degree of confidence that patient referrals to SPCS will

occur where needed. Most oncologists and nurse practitioners (post-ENABLE II

RCT) expressed confidence about initiating early referrals to SPCS and chose to

introduce this as a standard disease pathway for some patients (Bakitas et al., 2013).

In contrast, an Australian study (n = 19) (McGrath & Holewa, 2006) reported

haematologists had an unrealistic focus on cure, indicated by the provision of active

cancer treatment during the terminal stages, lack of palliative care discussions and


referrals to the service. Understanding of the influence of optimism is limited by the

included studies, which did not examine how unrealistic optimism influenced

healthcare professional referral behaviours (Cane et al., 2012). Overall, limited

evidence suggests that the degree of optimism about referral directly influences the

referral behaviours of healthcare professionals (Bakitas et al., 2013; McGrath &

Holewa, 2006).

Beliefs about consequences

Beliefs about consequences is defined by Cane et al. (2012) as a feeling of

being sure about outcomes of a behaviour within a specific context. In the context of

this review, beliefs about consequences refers to healthcare professionals’ acceptance

of the reality that specific outcomes occur as a result of their decision to refer or not

refer to SPCS (Cane et al., 2012). Three studies reported that healthcare professionals

believed that referral to SPCS caused distress in patients and their families (Bakitas

et al., 2013; Fadul et al., 2009; C. Smith et al., 2012). In an American study (n = 140)

(Fadul et al., 2009), oncologists and midlevel providers believed referral to a service

named palliative care reduced hope for the future (44%) and promoted distress

(33%) in patients and their families. Likewise, an American survey (n = 155) of lung

cancer physicians (C. Smith et al., 2012), found a statistically significant relationship

existed between low referral rates and the belief that palliative care referrals caused

psychosocial distress. Qualitative studies expanded on these findings, reporting that

healthcare professionals did not refer if they had previously experienced patient

refusals (Bakitas et al., 2013) or believed it was inappropriate to inform patients they

were dying (Johnson et al., 2011).

Two separate studies (Hong et al., 2011; Johnson et al., 2008) reported

different findings: 56% (n = 699) (Johnson et al., 2008) and 83% (n = 51) (Hong et

al., 2011) of physicians did not believe palliative care referral discussions reduced

patients’ hope for the future. Similarly, many Australian physicians agreed patient

refusal (60.9%) or family opposition (67%) towards SPCS were only minor barriers

to referral (Ward et al., 2009). Qualitative findings (Bakitas et al., 2013) highlighted

the importance of sensitively introducing palliative care prior to referral to avoid

negative outcomes. However, none of the included studies presented findings on how

anticipated regret influenced healthcare professionals’ referral behaviours (Cane et


al., 2012). These studies demonstrate how healthcare professionals’ beliefs about the

consequences of referral inform their referral behaviours (Bakitas et al., 2013; Fadul

et al., 2009; Hong et al., 2011; Johnson et al., 2011; C. Smith et al., 2012).

Intentions

According to the refined TDF, intentions refers to something that you plan to

do in a specific way (Cane et al., 2012). In the context of this review, intentions refer

to any conscious decision to sustain active cancer treatment and/or refer a patient to

SPCS (Cane et al., 2012). McGrath & Holewa’s (2006) study (n = 19) provided

insights into the conscious decisions of haematologists who were observed to

purposefully sustain active treatment for patients with terminal cancer, rather than

refer to SPCS. In contrast, an American study (n = 35), (Bakitas et al., 2013) found

most oncology healthcare professionals made decisions motivated by their intention

to treat the whole person and provide quality (rather than quantity) of life to the

terminally ill. The findings of this domain are limited by the included studies, which

do not measure how two theoretical constructs (stages of change model or the

transtheoretical model) influence the referral behaviours of healthcare professionals

(Cane et al., 2012). Overall, limited evidence indicates that the intentions of

healthcare professionals directly inform their referral behaviours (Bakitas et al.,

2013; McGrath & Holewa, 2006).

Goals

Goals are defined by Cane et al. (2012) as a desired result that an individual

wants to accomplish. For the purposes of this review, goals focuses on the end state

that is achieved by initiating a referral and/or sustaining active treatment for patients

with advanced cancer (Cane et al., 2012). Healthcare professionals who wanted to

achieve a multidisciplinary or concurrent model of care agreed SPCS involvement

was beneficial for patients (Bakitas et al., 2013; Hong et al., 2011; Johnson et al.,

2008; Johnson et al., 2011; Ward et al., 2009; Wentlandt et al., 2012). An Australian

study (n = 699) (Johnson et al., 2008) found many physicians chose to refer patients

to SPCS based on an anticipated need for physical symptom control (83%) or

psychosocial support (47%). However, understanding of the influence of goals is


limited by the included studies, which did not measure how four theoretical

constructs (goal priority, action planning, goals [autonomous/controlled] and

goal/target setting) influenced the referral behaviours for healthcare professionals

(Cane et al., 2012). Overall, a desire to provide a concurrent model of care or receive

symptom management support motivated healthcare professionals to refer to SPCS

(Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2008; Johnson et al., 2011;

Ward et al., 2009; Wentlandt et al., 2012).

3.6.4 AUTOMATIC MOTIVATION

Using the COM-B model, automatic motivation is defined as habitual processes

or behaviours that occur without conscious thought or attention (Michie et al., 2011).

In the context of this review, automatic motivation refers to how reinforcement and

emotions can promote or inhibit the referral behaviours of healthcare professionals.

Reinforcement

Reinforcement refers to defined strategies employed to increase the likelihood

of an outcome, such as arranging dependent relationships, outcome-incentives or

deterrents (Cane et al., 2012). In the context of this review, reinforcement

encompasses any incentives or deterrents that influence the referral behaviours of

healthcare professionals (Cane et al., 2012). In three studies, access to specialist

assistance (such as symptom management support) acted as a referral incentive

(Bakitas et al., 2013; Johnson et al., 2011; Ward et al., 2009), especially when

healthcare professionals lacked the time or expertise to address patient concerns

(Bakitas et al., 2013). By contrast, an Australian study (n = 40) (Johnson et al., 2011)

reported narrow acceptance criteria deterred some physicians from referring to

SPCS. Understanding of the influence of reinforcement is limited by the included

studies, which did not measure how three theoretical constructs (reinforcement,

contingencies and sanctions) influenced referral behaviours (Cane et al., 2012).

Limited evidence suggests access to specialist assistance motivated referrals to the

service (Bakitas et al., 2013; Johnson et al., 2011; Ward et al., 2009).


Emotions

Emotions are complex feelings or reactions in response to a personally

significant experience (Cane et al., 2012). In the context of this review, emotions

refers to the complex reactions and feelings that healthcare professionals may

experience when considering referral to SPCS (Cane et al., 2012). In an Australian

study (n = 19) (McGrath & Holewa, 2006), several haematology nurses expressed

frustration and distress when they recognised patients needed SPCS involvement, yet

felt powerless to change the situation. In contrast, 20% of physicians in a

Singaporean study (n = 80) felt depressed when managing patients with progressive

disease, which may have prompted 23.9% of physicians to refer terminally ill

patients to SPCS (Hong et al., 2011). The influence of this domain is limited by the

included studies, which did not examine four theoretical constructs (fear, anxiety,

affect or burnout) related to this domain (Cane et al., 2012). Limited evidence exists

on how emotions affect the referral behaviours of healthcare professionals (Bakitas et

al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006).

3.7 DISCUSSION

This is the first integrative review on the factors that influence referrals to

SPCS for patients with advanced cancer. The purpose of this review was to explore

the research question: What are the clinical, professional and health system factors

that influence the decision-making process for a referral to be made to SPCS for

hospitalised patients with advanced cancer? The findings of this review highlight the

importance of understanding the complexity of the healthcare professional referral

behaviours to design and successfully implement appropriate interventions. Based on

a small number of published studies, the evidence suggests a lack of congruence

exists between the psychological capabilities and/or reflective motivations of

healthcare professionals and their referral behaviours (Johnson et al., 2008; Ward et

al., 2009).

Specifically, the literature indicates that the ability of healthcare professionals

to recognise referral cues is influenced by the goals of care, beliefs about the

consequences of referral and/or degree of self-perceived competence and confidence

in symptom management and initiating palliative care discussions. These factors


interplay within a busy acute care environment, where contextual cues such as the

degree of integration between the treating team and SPCS, time constraints, group

norms and power imbalances between healthcare professionals contributed to

uncertainty about the best time to refer patients. Collectively, these findings highlight

the complex interactions between healthcare professionals’ psychological

capabilities, reflective motivations and their social and physical opportunities that

generate referral behaviours. Such complex interactions are possibly due to the

nature of healthcare professional referral behaviours, which do not occur in isolation,

but rather exist within specific social and environmental contexts (Johnson et al.,

2008; Michie et al., 2014; Ward et al., 2009).

These behaviours exist within an environment where competing or contributing

behaviours influence each other (Michie et al., 2014). Research suggests healthcare

professional referral behaviour is influenced by the individual practitioner’s

symptom management behaviours and/or degree of action in initiating palliative care

discussions (Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2008; Johnson et

al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et al., 2012).

Interactions with other people, such as healthcare professionals, patients and families

are also likely to contribute to healthcare professional referral behaviours. Healthcare

professionals do not solely control the referral process. It is a collaborative decision

involving consideration of the needs of the patient, desires of the family and

concerns of the multidisciplinary team (Broom et al., 2012). The subjective and

relational negotiation of referral is shaped by the biographies of patients and the

communication styles of healthcare professionals, patients and families when

discussing palliative care and SPCS (Broom, Kirby, Good, Wootton, & Adams,

2013, 2014; Broom, Kirby, Good, Wootton, Yates, et al., 2014). Further research is

needed to understand how this relational context contributes to the ambiguity that

surrounds whether and when to introduce SPCS.

By comparing the findings of this review with existing knowledge, the broader

context of the referral decision-making process is better understood. While evidence

has shown early referrals to SPCS for patients with advanced cancer provide

considerable benefits, complex factors have hindered efforts to translate this

knowledge into practice (Dalgaard, Bergenholtz, Nielsen, & Timm, 2014; Ferrell et

al., 2016; Greer, Jackson, Meier, & Temel, 2013; Parikh, Kirch, Smith, & Temel,


2013; Pirl et al., 2012; Temel et al., 2010). Difficulties negotiating the transition to

palliative care have recently been attributed to the readiness of healthcare

professionals, patients and families to discuss palliative care and the degree of

integration between services (Bakitas et al., 2013; Broom, Kirby, Good, Wootton,

Yates, et al., 2014; Fox, Windsor, Connell, & Yates, 2015; Johnson et al., 2011).

Inter-professional tensions between physicians and nurses were frequently described

by nurses from a range of specialties when reflecting on their experiences advocating

for referrals to palliative care (Broom, Kirby, Good, Wootton, Yates, et al., 2014).

While such findings suggest that interventions to promote integration between

disciplines are needed, they also indicate the need to raise awareness about the role

and intent of SPCS within hospitals and the broader community. Societal stigma

about death, dying and SPCS need to be addressed to ensure the wider community

are well-informed about the benefits of providing early access to SPCS to those who

need it.

In the USA, a lack of healthcare professional knowledge about hospice referral

policies and practices has been found to block hospice referrals, whereas increased

referral rates were associated with oncologists who rated their knowledge highly

(Bradley et al., 2002; Bradley et al., 2000). While it is not surprising that palliative

care knowledge promotes referrals to hospices, self-rated measurements may not be

the most accurate indicators of understanding. Quantitative research using more

objective measurements of healthcare professional knowledge is needed to determine

how this factor influences referral behaviours.

Current understanding of the factors that influence the referral decision-making

process is incomplete. This review reinforces the need to assess all relevant

behaviours of all key stakeholders prior to implementation design. Based on current

understanding, referrals to SPCS might be more likely to occur if a multifaceted

intervention was introduced that addressed the psychological capabilities, social and

physical opportunities and reflective motivations of healthcare professionals.

3.8 LIMITATIONS

The application of the integrative review methodology was limited due to the

small number of studies and their methodological designs. While the methodological


quality of the included studies was high, many of the studies employed survey

instruments with potentially limited validity and reliability. Moreover, several

included studies lacked a comprehensive approach to problem analysis or tended to

focus on a limited number of variables (Bakitas et al., 2013; Charalambous et al.,

2014; Fadul et al., 2009; Hong et al., 2011; Johnson et al., 2008; McGrath & Holewa,

2006; C. Smith et al., 2012). No evidence was identified on how physical capability

(component of COM-B model) or behavioral regulation (TDF domain) affected

healthcare professional referral behaviours towards SPCS (Cane et al., 2012). Further

research is needed to confirm and expand on the factors influencing the referral

decision-making process for healthcare professionals working in the acute cancer

setting. Future studies should focus on quantifying the influence of factors on the

behaviours of healthcare professionals, as well as examining causal relationships

between the personal and organisational factors and their observed clinical practices.

The included studies are heavily dominated by physicians practising in

developed countries, restricting the generalisability of these findings to similar

settings. Between 2004 – July 2017, one study (Maloney et al., 2013) reported the

experiences of patients with advanced cancer who received consultation from a

palliative care physician. This study (Maloney et al., 2013) was not included in the

review as the patients’ palliative care consultation experiences were evaluated as part

of a specially-designed palliative care intervention (case management with four

psycho-educational telephone advice sessions delivered by advanced practice nurses

with palliative care training and/or shared medical appointments with a palliative

care physician) for a randomised controlled trial (Bakitas et al., 2009). Only three

studies have explored nursing perspectives (Bakitas et al., 2013; Fadul et al., 2009;

McGrath & Holewa, 2006) in combination with other healthcare professionals. The

scarcity of research on the experiences of patients with advanced cancer is

concerning, given the escalating intensity and complexity of care needs as the disease

progresses. The lack of evidence about the role of cancer nurses was also surprising,

given their role to advocate for patients as part of the round-the-clock clinical care

provided in acute settings.

Limited research exists on the experiences of caregivers and families in the

referral decision-making process. Further qualitative research exploring the

experiences, feelings and expectations of caregivers and families caring for those


with advanced cancer is needed. While some researchers criticise the strength of

available evidence on this topic, many study designs which ranked highly on the

hierarchy of evidence are inappropriate to investigate this research question.

3.9 CONCLUSION

This review confirms that a complex interplay of factors (capabilities,

opportunities and motivations) interact to generate healthcare professional referral

behaviours. These factors are affected by contextual circumstances at a clinical,

professional, individual and healthcare system level. Based on current understanding,

an intervention is needed that is responsive to the psychological capabilities, social

and physical opportunities and reflective motivations of healthcare professionals.

Limited evidence exists about the referral behaviours of cancer nurses towards

SPCS. Further exploration of the cancer nursing, patient and carer roles is needed to

identify how they contribute to the referral process. It is vital that future

implementation studies consider the findings of this review when designing

interventions that aim to promote early referrals between acute palliative care and

cancer care services. The complexities of healthcare professional referral behaviours

demand a multifaceted intervention.

Chapter 4: Stage One Methods & Results 45

Stage One Methods & Results

4.1 AN OVERVIEW OF THE RESEARCH DESIGN

This study aimed to address a knowledge gap identified by the integrative

review by exploring how cancer nurses contribute to the palliative care referral

decision-making process and identifying the factors that influence nursing advocacy

behaviours. To develop and explore the research questions, this study was divided

into two stages. Stage One of the study was the development of a questionnaire for

measuring frequencies of cancer nurses’ advocacy behaviours for patient referrals to

SPCS and the demographic factors and potential determinants associated with these

behaviours. Questionnaire development was guided by the conceptual frameworks

(TDF and COM-B model). Using this questionnaire, the second stage involved an

online cross-sectional survey of cancer nurses distributed through two professional

organisations.

4.2 INTRODUCTION TO STAGE ONE

This chapter outlines how the integrative review findings informed Stage One

of the research plan—the development of a questionnaire to measure cancer nursing

advocacy actions towards instigating palliative care referrals and the potential

behavioural determinants and demographic factors that influence such behaviours.

Specifically, this chapter outlines the guiding frameworks and methods employed to

conceptualise the questionnaire, as well as participant selection, procedures, data

management, data analysis and outcomes of the subsequent validity and pilot testing.

4.3 STAGE ONE: DEVELOPMENT OF THE QUESTIONNAIRE

To date, no validated instrument exists to measure the nursing advocacy

behaviours that facilitate patient referrals to SPCS and the potential behavioural

determinants and demographic factors that influence these actions. Hence, the first

stage of this study was to develop a survey instrument that aimed to: (i) address this

knowledge gap within the literature; and (ii) confirm and expand on the findings of

46 Chapter 4: Stage One Methods & Results

the review. This instrument was entitled the Nursing Advocacy in Cancer Care

(NACC) questionnaire. The NACC questionnaire was developed following the

procedures outlined in Figure 4-1.

The initial NACC questionnaire had three sections: (i) Section one:

demographic factors; (ii) Section two: Nursing Advocacy Actions taken to facilitate

Palliative Care Referrals (NAA-PCR) subscale; and (iii) Section three: Determinants

Of Cancer Nursing Advocacy Behaviours (DOCNAB) subscale (refer to Appendix F).

Items measuring demographic factors were constructed based on at least one of

following criteria: (i) to determine whether respondents met the eligibility criteria for

this study; (ii) to provide a description of the sample profile; or (iii) to identify

factors that may influence cancer nursing advocacy behaviours. The NAA-PCR

subscale was conceptualised using definitions of nursing advocacy behaviours from

the Advocacy in Procedural Pain Care (APPC) survey instrument (Vaartio, Leino-

Kilpi, Suominen, & Puukka, 2009a, 2009b) and relevant literature findings,

predominantly relying on a literature review of cancer nursing advocacy behaviours

(Vaartio-Rajalin & Leino-Kilpi, 2011). The development of the DOCNAB subscale

involved mapping integrative review findings to the Determinants of Implementation

Behaviour Questionnaire (DIBQ) (Huijg et al., 2014). When integrative review

findings were not relevant to a key construct of any of these subscales, relevant

literature or expert opinion (applied in consultation with principal and associate

supervisors) were used to inform the development of survey items. Expert review of

survey content (n = 6) and pilot testing (n = 6) informed the final NACC

questionnaire.


Figure 4-1. Procedures for the development of the NACC questionnaire.

1. Initial development of items relevant to cancer nurses facilitating patient referrals to SPCS were derived from:

− The integrative review (reported in Chapter 3) − The Determinants of Implementation Behaviour Questionnaire (DIBQ) − Nurses as patient advocates in oncology care: activities based on literature (literature review) − Relevant literature providing definitions or measurements of key constructs − Expert opinion

2. Initial questionnaire divided into three sections:

− Potential behavioural determinants subscale (DOCNAB subscale) − Demographic factors − Types of nursing advocacy behaviours (NAA-PCR subscale)

3. Adapting the 93 items of the DIBQ to develop a new subscale that specifically assesses potential behavioural determinants for nursing advocacy behaviours - the DOCNAB subscale

4. Conceptualising demographic factors that influence nursing advocacy behaviours relevant to this study, using relevant literature findings and expert opinion – Demographic factors

5. Conceptualising items relevant to types of nursing advocacy behaviours involved in facilitating patient referrals to SPCS, using relevant literature findings and definitions from APPC survey instrument – NAA-PCR subscale

6. Expert review of survey content (n = 6)

− Assess content validity of new questionnaire, using an evaluation form − Suggested changes reviewed and applied in consultation with principal and associate supervisors

7. First modification of the items in the survey instrument

8. Pilot testing of instrument (n = 6)

− Assess face validity of modified survey instrument, by completing an evaluation form − Identify whether any navigational problems exist, by completing online questionnaire − Verify data output matches the contingency instructions provided in the online questionnaire − Suggested changes reviewed and applied in consultation with principal and associate supervisors

9. Final modification of the items in the survey instrument


4.3.1 Development of Nursing Advocacy Actions taken to facilitate Palliative Care Referrals (NAA-PCR) subscale

Despite being considered a core component of nursing (Nursing and Midwifery

Board of Australia, 2016), nursing advocacy has been poorly conceptualised in the

literature (Vaartio & Leino-Kilpi, 2004; Vaartio et al., 2009a). Nursing advocacy is

not a single action (Vaartio, Leino‐Kilpi, Salanterä, & Suominen, 2006). Limited

evidence defines the process inconsistently with few descriptions of specific nursing

advocacy practices (Vaartio & Leino-Kilpi, 2004; Vaartio-Rajalin & Leino-Kilpi,

2011). The lack of consensus on what nursing advocacy encompasses has resulted in

difficulties in its operationalisation (Vaartio et al., 2009a).

There are limited descriptions of nursing advocacy activities in oncology

and/or haematology settings within the literature (Gosselin-Acomb et al., 2007;

Pavlish & Ceronsky, 2007, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011). One

researcher has completed seminal work, providing a comprehensive analysis of

nursing advocacy behaviours in procedural pain care. This work has been presented

in a thesis and in several papers including a literature review, concept clarification

with patients, medical and surgical nurses, psychometric testing of the APPC survey

instrument, and a cross-sectional study (Vaartio, 2008; Vaartio et al., 2009a, 2009b;

Vaartio et al., 2006; Vaartio, Leino‐Kilpi, Suominen, & Puukka, 2008). Importantly,

Vaartio’s work identified nursing advocacy as a series of actions involving three

types of nursing advocacy behaviours: analysing, counselling and responding

(Vaartio, 2008).

Since then, Vaartio-Rajalin and Leino-Kilpi (2011) have conducted a literature

review on the role of nurses as patient advocates in the oncology setting and

compared their review findings to nursing advocacy activities previously described

by Vaartio (2008) and Vaartio et al. (2009b). Their comparative literature review

confirms nurses working in oncology perform similar types of nursing advocacy

behaviours to nurses providing procedural pain care (Vaartio, 2008; Vaartio-Rajalin

& Leino-Kilpi, 2011). Thus, this study chose to conceptualise survey items for the

NAA-PCR subscale using Vaartio (2008) definitions for three distinct types of

nursing advocacy behaviours: analysing, counselling and responding behaviours.

Analysing activities were defined as assessing a patient’s care preferences and

self-determination preferences, such as assessing their healthcare needs (Vaartio et


al., 2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011). Counselling

activities encompassed nurses providing advice and support to patients about their

care and communicating any identified healthcare preferences to other members of

the healthcare team and/or the patient’s support network (Vaartio et al., 2009b;

Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011). Examples of counselling

activities include providing patients with healthcare information to promote them to

make informed decisions about their treatment plans and communicating educational

needs to other nursing staff (Vaartio-Rajalin & Leino-Kilpi, 2011). Responding

activities are actions nurses take in response to patient care preferences and self-

determination preferences, such as facilitating access to comprehensive

multidisciplinary care based on their identified healthcare needs (Vaartio et al.,

2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011).

These empirically-driven categorisations of nursing advocacy activities

(analysing, counselling and responding) were used to guide the development of

nursing advocacy behaviours specifically relevant to this study (Vaartio, 2008).

Survey items for the NAA-PCR subscale were developed using at least one of the

following: (i) descriptive studies of general nursing or oncology nursing advocacy

activities; (ii) literature reviews; (ii) observational studies exploring nursing

advocacy as a concept; (iii) qualitative studies exploring nursing advocacy as a

concept; or (iv) expert opinion (applied in consultation with principal and associate

supervisors). Table 4.1 summarises the supporting evidence for the inclusion of 11

nursing advocacy behaviours in the NAA-PCR subscale of the initial NACC

questionnaire.


Table 4.1.

Categorisation of nursing advocacy behaviours

Note. D: provided definition of key constructs; L: review of literature; O: observational study; Q: qualitative study; S: recommended by supervisory team; T: thesis.

Types of nursing advocacy behaviours Classification Reasons for

inclusion Supporting evidence for nursing

advocacy behaviours Supporting evidence for nursing

advocacy behaviours in oncology setting Assess whether patients have a good understanding of their treatment options

Analysing L+Q+D+S+T (Choi, 2015; Negarandeh, Oskouie, Ahmadi, Nikravesh, & Hallberg, 2006; Vaartio, 2008; Vaartio et al., 2009a)

(Pavlish & Ceronsky, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011)

Assess whether patients have a good understanding of their prognosis

Analysing Q+D+S (Choi, 2015; Negarandeh et al., 2006) (Pavlish & Ceronsky, 2009)

Ask patients to identify their goals of care Analysing Q+D+S (Choi, 2015; Pavlish & Hunt, 2012) (Gosselin-Acomb et al., 2007; Pavlish & Ceronsky, 2007)

Identify the need for patient referrals to specialist palliative care services

Analysing Q+S (Pavlish & Ceronsky, 2007)

Provide patients with information about their right to make informed decisions about their healthcare

Counselling L+O+D+Q+S+T (Baldwin, 2003; Choi, 2015; Curtin, 1979; Vaartio, 2008; Vaartio & Leino-Kilpi, 2004; Vaartio et al., 2009a)

(Gosselin-Acomb et al., 2007; Vaartio-Rajalin & Leino-Kilpi, 2011)

Provide patients with information about specialist palliative care services

Counselling Q+S (Pavlish & Ceronsky, 2009)

Empower patients to make informed decisions about their treatment options

Counselling D+L+Q+S+T (Baldwin, 2003; Choi, 2015; Vaartio, 2008; Vaartio & Leino-Kilpi, 2004)

Discuss with nursing colleagues the need to refer patients to specialist palliative care services

Counselling Q+S (Pavlish & Ceronsky, 2007)

Discuss with colleagues in the healthcare team the need to refer patients to specialist palliative care services

Counselling D+L+Q+S (Baldwin, 2003; Bu & Jezewski, 2007; Choi, 2015; Vaartio et al., 2006)

(Pavlish & Ceronsky, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011)

Facilitate referral to specialist palliative care services Responding D+Q+S (Choi, 2015) (Pavlish & Ceronsky, 2007, 2009) Independently refer patients to specialist palliative care services

Responding S


4.3.2 Development of Determinants Of Cancer Nursing Advocacy Behaviours (DOCNAB) subscale

The DOCNAB subscale of the NACC questionnaire aimed to address the

research question: What are the potential behavioural determinants (as defined by

the domains of the DIBQ) influencing nurses advocating for patient referrals to

SPCS as perceived by Australian cancer nurses? Following a review of the literature,

the DIBQ was chosen as the survey instrument to guide the development of items for

the DOCNAB subscale. The DIBQ was developed using a conceptual framework

introduced in Chapter Three of this study: the original TDF (Michie et al., 2005).

This survey instrument aims to comprehensively measure the potential behavioural

determinants for any healthcare professional behaviour (Huijg et al., 2014).

Validity testing led to a re-configuration of the 12-domain TDF, which

involved the division of the ‘environmental context and resources’ domain into five

different environment-related domains: ‘innovation’, ‘socio-political context’,

‘organization’, ‘patient’ and ‘innovation strategy’ (Huijg et al., 2014; Michie et al.,

2005). In addition, ‘optimism’ was separated from the ‘beliefs about capabilities’

domain; ‘emotion’ was divided into ‘positive emotions’ and ‘negative emotions’; and

‘memory, attention and decision processes’ and ‘automaticity’ items were merged

into ‘nature of the behaviours’ domain (Huijg et al., 2014; Michie et al., 2005). This

process produced a 93-item TDF-based questionnaire that measures 18 domains of

behavioural determinants with good discriminant validity (Huijg et al., 2014; Michie

et al., 2005). The 26 theoretical constructs of the DIBQ are measured using the scales

outlined in Table 4.2.

The DIBQ (Huijg et al., 2014) can be tailored to measure the potential

determinants of any healthcare professional behaviour. Data collected using the

DIBQ can then be used to inform the development of behaviour change strategies

targeted towards improving the translation of evidence into practice (Huijg et al.,

2014). This 93-item DIBQ demonstrated good construct validity and the majority of

domains showed high internal consistency and reliability when used to measure the

factors influencing physical therapists’ implementation of physical activity

interventions (Huijg et al., 2014).


Table 4.2.

Measurement scales for the DIBQ

Domains Constructs Measurement scales Response options

D1 Knowledge; role clarity Level of agreement (strongly disagree–strongly agree)

Strongly disagree; disagree; somewhat disagree; neither agree nor disagree; somewhat agree; agree; strongly agree

D2 Skills D3 Professional roleD4 Self-efficacy; perceived

behavioural control* D5 Optimism D6 Outcome expectancies;

ReinforcementD7 Intention* D9 Innovation characteristics D10 Socio-political context D11 Organizational resources and

support D12 Patient characteristics D13 Innovation strategies D14 Subjective norm; descriptive

norm; Social support D15 Positive emotions D16 Negative emotions D17 Action planning; coping

planning D18 Automaticity; memory D4 Perceived behavioural

control* Degree of difficulty (very difficult–very easy)

Very difficult; difficult; somewhat difficult; neither difficult nor easy; somewhat easy; easy; very easy

D6 Attitude Usefulness (not useful–very useful); Worthwhile (not worthwhile at all–very worthwhile); Pleasurable (not pleasurable at all–very pleasurable); Degree of interest (not interesting at all–very interesting)

For each item: choice of seven bullet points, anchored by word descriptors at each end.

D7 Intention* Strength of intentions (not strong at all–very strong)

For each item: choice of seven bullet points, anchored by word descriptors at each end.

D8 Priority Frequency (never–always) Never; seldom; sometimes; regularly; often; almost always; always

Note. *theoretical construct measured using two different scales. From “Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework,” by J.M. Huijg et al., 2014, Implementation Science, 9, p. 6-9. Copyright [2014] by BioMed Central Ltd. Reprinted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).


While Huijg et al. (2014) claims their approach to questionnaire development

is valid and reliable, there are limited examples of how the DIBQ has been adapted to

measure healthcare professional behavioural determinants in clinical practice

(Alqubaisi, Tonna, Strath, & Stewart, 2016; Cahir, Dombrowski, Kennedy, Sharp, &

Bennett, 2017; Huijg et al., 2015; Seward et al., 2017; Slade, Dionne, Underwood, &

Buchbinder, 2014). To date, only one study protocol could be identified (Slade et al.,

2014), and three cross-sectional studies (Alqubaisi et al., 2016; Cahir et al., 2017;

Huijg et al., 2015) have developed survey items based on the DIBQ for healthcare

settings (Huijg et al., 2014). In addition, the acceptability to healthcare professionals

of completing the 93-item DIBQ is largely unknown. One study (Alqubaisi et al.,

2016) reported the length of the survey instrument was acceptable to healthcare

professionals, and another study (Huijg et al., 2015) achieved a high response rate

(55.2%) indicating a degree of acceptability at least in some behavioural contexts.

Other limitations of the DIBQ include the need for further construct validity

testing of the domains and insufficient internal consistency values for the five

environmental-related domains. In addition, the overlapping content between some

domains may cause difficulties during multivariate analysis (Huijg et al., 2014).

Lastly, it is not feasible to construct a TDF-based questionnaire that measures all 84

theoretical constructs within the 12 domains.

Despite these limitations, the DIBQ has potential value in the context of this

present study. This validated survey instrument provides a comprehensive approach

towards measuring the potential behavioural determinants of healthcare professionals

in relation to a knowledge translation problem. Importantly, the DIBQ is based on a

rigorously developed behaviour change framework (Michie et al., 2005) and linked

to a complementary step-by-step guide for designing behaviour change interventions

(Michie et al., 2014).


4.3.3 Methods for questionnaire development

Survey development was undertaken following a three-step process:

identification of the domains of interest; item generation for each domain; and

formatting the instrument into a user-friendly format (Lynn, 1986). For inclusion in

the survey instrument, the item must fulfil at least one of the following criteria:

• Is identified from the integrative review to be a factor that influences the

decision-making process for referrals to SPCS for patients with advanced

cancer;

• Is recognised in Clinical practice guidelines for communicating prognosis

and end-of-life issues with adults in the advanced stages of a life-limiting

illness, and their caregivers (Clayton, Hancock, Butow, Tattersall, &

Currow, 2007) as a factor influencing referrals to SPCS;

• Is identified in a systematic review (Level I evidence as defined by the

National Health and Medical Research Council) to be a facilitator or

barrier towards patient referrals to SPCS;

• Is identified in a review of the literature; quantitative; or qualitative

studies as a factor influencing referrals to SPCS;

• Is, in the opinion of the research student and supervisors, an essential

factor to be included.

The initial NACC questionnaire (refer to Appendix F) consisted of 95 items

across three sections. Section one (items 1–11) measured demographic factors,

section two (items 12–13) measured the type, timing and frequency of specific

nursing advocacy behaviours relevant to this study (using NAA-PCR subscale), and

section three (items 14–95) measured the potential behavioural determinants that

influence nursing advocacy behaviours (using the DOCNAB subscale) (Huijg et al.,

2014). Table 4.3 lists the initial survey items and provides a summary of the

supporting literature as a rationale for their inclusion.


Table 4.3.

Initial NACC questionnaire items developed from multiple sources

Section of questionnaire

Questionnaire content Corresponding

items Reasons for

inclusion Supporting evidence

Demographic factors

Employment status 1 Filter question

Provides care to patients with cancer in in-patient setting

2 Filter question

Type of SPCS available 3 IR+O+S Type of SPCS available: (Bakitas et al., 2013; Hui et al., 2015; Johnson et al., 2008)

Primary focus of current nursing role 4 Provides sample profile

Years of practice as cancer nurse 5 S

Current area/s of practice 6 S

Highest level of education completed in nursing 7 S

Completion of palliative care specific education 8 G+IR+S Palliative care education/training: (Clayton et al., 2007; Johnson et al., 2011; Wentlandt et al., 2012)

History of working for SPCS 9 IR+O+S

Geographical location of workplace 10 IR+O+S Geographical location affected access and type of SPCS: (Johnson et al., 2011; Wentlandt et al., 2012)

NAA-PCR subscale

Frequency of nursing advocacy behaviours 11 D+L+Q+S Patient advocacy/nursing actions: (Baldwin, 2003; Bu & Jezewski, 2007; Choi, 2015; Curtin, 1979; Gosselin-Acomb et al., 2007; Negarandeh et al., 2006; Pavlish & Ceronsky, 2007, 2009; Pavlish & Hunt, 2012; Vaartio, 2008; Vaartio & Leino-Kilpi, 2004; Vaartio et al., 2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011)

Frequency of advocating for referrals at specific time points

Frequency of advocating for referrals under circumstances listed

12 D+G+L+O+Q+R+S

Time points of referral: (Charalambous et al., 2014; Clayton et al., 2007; Howell et al., 2011; McGrath & Holewa, 2006; Wentlandt et al., 2012)

Definition of advanced cancer: (American Cancer Society, 2016; Button, Chan, Chambers, Butler, & Yates, 2016; National Cancer Institute, 2015)

Factors Knowledge: 13-16 D+S+V Definitions of key constructs: (Cane et al., 2012; Huijg et al., 2014)




items Reasons for


potentially influencing cancer nurses’ behaviours; measured using DOCNAB subscale

• Procedural knowledge

• Role clarity

Skills:

• Skills

• Skill development

17-20 D+IR+O+Q+S+V Palliative care training: (Cane et al., 2012; Huijg et al., 2014; Johnson et al., 2011; Wentlandt et al., 2012)

Social/professional role and identity:

• Professional role

21-23 D+S+V Definitions of key constructs: (Cane et al., 2012; Huijg et al., 2014)

Beliefs about capabilities:

• Self-confidence

• Perceived competence

• Perceived behavioural control

24-33 D+G+IR+O+Q+S+V Perceived competence and self-confidence in palliative care skills: (Bakitas et al., 2013; Cane et al., 2012; Clayton et al., 2007; Hong et al., 2011; Huijg et al., 2014; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et al., 2012)

Optimism:

• Optimism

34-36 D+IR+Q+S+V Optimism: (Bakitas et al., 2013; Cane et al., 2012; Clayton et al., 2007; Huijg et al., 2014)

Factors potentially influencing cancer nurses’ behaviours; measured using DOCNAB subscale

Beliefs about consequences:

• Attitude

• Outcome expectancies

• Reinforcement

37-45 D+G+IR+O+Q+S+V Beliefs about consequences of referral: (Bakitas et al., 2013; Cane et al., 2012; Clayton et al., 2007; Fadul et al., 2009; Hong et al., 2011; Huijg et al., 2014; Johnson et al., 2011; C. Smith et al., 2012)

Intentions:

• Stability of intentions

46-47 D+IR+O+Q+V Effect of working relationships on intentions: (Cane et al., 2012; Charalambous et al., 2014; Huijg et al., 2014; Johnson et al., 2011; Ward et al., 2009)

Goals:

• Priority

48-49 D+L+Q+V Priority of nursing tasks: (Cane et al., 2012; Huijg et al., 2014; Pavlish & Ceronsky, 2007; Vaartio-Rajalin & Leino-Kilpi, 2011)

Innovation:

• Innovation characteristics

50-54 D+IR+O+V Impact of innovation: (Fleuren, Wiefferink, & Paulussen, 2004; Huijg et al., 2014; C. Smith et al., 2012)

Socio-political context:

• Socio-political context

55-57 D+S+V Contextual factors: (Fleuren et al., 2004; Huijg et al., 2014)

Organization:

• Organizational resources and support

58-62 D+IR+O+Q+S+V Organisational factors: (Bakitas et al., 2013; Fleuren et al., 2004; Hong et al., 2011; Huijg et al., 2014; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et




items Reasons for


al., 2012)

Patient:

• Patient characteristics

63-64 D+IR+O+Q+S+V Patient-related factors: (Fleuren et al., 2004; Huijg et al., 2014; Johnson et al., 2008; McGrath & Holewa, 2006; Wentlandt et al., 2012)

Factors potentially influencing cancer nurses’ behaviours; measured using DOCNAB subscale

Social influences:

• Subjective norm

• Descriptive norm

• Social support

69-75 D+IR+Q+S Group norms affected referral practices: (Bakitas et al., 2013; Cane et al., 2012; Fleuren et al., 2004; Johnson et al., 2011; McGrath & Holewa, 2006)

Positive emotions:

• Positive emotions

76-78 D+Q+S+V Optimism: (Bakitas et al., 2013; Cane et al., 2012; Huijg et al., 2014)

Negative emotions:

• Negative emotions

79-83 D+IR+O+Q+S+V Frustration/Emotional fatigue/burnout: (Barrett & Yates, 2002; Cane et al., 2012; Fleuren et al., 2004; Huijg et al., 2014; McGrath & Holewa, 2006; McMillan et al., 2016)

Behavioral regulation:

• Action planning

• Coping planning

84-89 D+S+V Definitions and process of patient advocacy: (Cane et al., 2012; Choi, 2015; Huijg et al., 2014)

Nature of the behaviors:

• Automaticity

• Decision-making process

90-102 D+IR+O+Q+S Reasons for referral: (Bakitas et al., 2013; Cane et al., 2012; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; C. Smith et al., 2012; Wentlandt et al., 2012)

Note: IR: integrative review; G: Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers; R: systematic review; L: review of literature; NAA-PCR subscale: Nursing Advocacy Actions taken to facilitate Palliative Care Referrals; O: observational study; Q: qualitative study; D: provided definition of key constructs; DOCNAB subscale: Determinants Of Cancer Nursing Advocacy Behaviours; S: recommended by supervisory team; SPCS: Specialist Palliative Care Services; V: validated survey instrument. Adapted from “Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework,” by J.M. Huijg et al., 2014, Implementation Science, 9 p. 6-9. Copyright [2014] by BioMed Central Ltd. Adapted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).


4.3.4 Rating scales

The initial DOCNAB subscale is presented as part of the original NACC

questionnaire in Appendix F. Likert-type scales were employed to collect most

quantitative data, to allow the respondent to rate various statements, such as their

level of agreement from ‘strongly disagree’ to ‘strongly agree.’ This scale has been

widely used in survey-based research (Nardi, 2015). Visual analogue scales were

proposed to measure the degree to which respondents found advocating for patient

referrals to SPCS to be a useful or worthwhile experience. Respondents scored these

two items (refer to Appendix F, Q. 38 and Q. 39) by rating their experience on a

continuum relative to two poles. Visual analogue scales (VAS) are often used to rate

the severity of pain (Nagata, Ido, Shimizu, Misao, & Matsuura, 1996). Cella and

Perry (1986) recommend the use of VAS for the rapid assessment of feelings, when

more lengthy scales are not appropriate. The initial measurement scales and response

options for the DOCNAB subscale are presented in Table 4.4.


Table 4.4.

Measurement scales for DOCNAB subscale

Domains (related items) Measurement scales Response options

Knowledge (13–16); skills (17–20); social/professional role and identity (21–23); beliefs about

capabilities (24–29); optimism (34–36); beliefs about consequences (39–45); intentions (46–

47); innovation (50–54); socio-political context (55–57); organization (58–62); patient (63–64);

innovation strategy (65–68); social influences (69–75); behavioral regulation (84–89); and

nature of behaviors (90–94)

Level of agreement (strongly disagree–

strongly agree).

Strongly disagree; disagree; somewhat

disagree; neither agree nor disagree;

somewhat agree; agree; strongly agree

Beliefs about capabilities (30–33) Degree of difficulty (very difficult–very

easy).

Very difficult; difficult; somewhat difficult;

neither difficult nor easy; somewhat easy;

easy; very easy

Goals (48–49); positive emotions (76–78); and negative emotions (79–83) Frequency (never–always). Never; seldom; sometimes; regularly; often;

almost always; always

Beliefs about consequences (37–38) Useful (not useful–very useful).

Worthwhile (not worthwhile at all–very

worthwhile)

Rate their experience on a continuum relative

to two poles.

From “Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework,” by J.M. Huijg et al., 2014, Implementation Science, 9, p. 6-9. Copyright [2014] by BioMed Central Ltd. Adapted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).


These measurement scales were not converted to one uniform scoring system

as previous research had already determined they had good discriminant validity

(Huijg et al., 2014) (described in Section 4.3.2). Modifications were made to the

DIBQ to measure potential behavioural determinants relevant to this study, as

recommended by the authors of the questionnaire (Huijg et al., 2014). ‘Self-

confidence’ was added to the ‘beliefs about capabilities’ domain to develop items

that could confirm and expand on findings from the integrative review. ‘Intentions’

was replaced with ‘stability of intentions’ (in the ‘intentions’ domain) to assess how

the intentions of healthcare professionals may potentially be influenced by different

clinical circumstances. Lastly, ‘memory’ was replaced with ‘decision making’ within

‘nature of the behaviours’ domain to measure whether specific referral cues influence

the referral decision-making process for cancer nurses.

The original DIBQ items for ‘positive emotions’ and ‘negative emotions’ were

replaced, as some of the feelings described were not relevant to the behaviours under

examination. New items were devised, guided by definitions of the relevant

theoretical constructs (Cane et al., 2012; Huijg et al., 2014) and relevant literature in

this area (Bakitas et al., 2013; Barrett & Yates, 2002; Fleuren et al., 2004; McGrath

& Holewa, 2006; McMillan et al., 2016). The original measurement scale (strongly

disagree–strongly agree) was replaced with a frequency scale (never–always) from

the DIBQ, which allowed respondents to score how often they felt specific emotions

when advocating for referrals to SPCS.

Modifications were also made to the environment-related items of the DIBQ to

improve their specificity for the context of this study. The developers of the DIBQ

stated items measuring the five environment-related domains (‘innovation’, ‘socio-

political context’, ‘organization’, ‘patient’ and ‘innovation strategy’) could be

improved (Huijg et al., 2014). One of the guiding frameworks for the DIBQ was the

work of Fleuren and colleagues (2004) on the determinants of innovation within

healthcare organisations. The results of their Delphi study (Fleuren et al., 2004)

identified 50 potential determinants, which guided the development of new items for

the five environment-related domains in the DOCNAB subscale. Slight modifications

were made to the wording of the remaining items of the DIBQ to measure factors

relevant to this study. Such modifications highlighted the need for validity and pilot

testing of the newly developed DOCNAB subscale.


4.4 EXPERT PANEL

It is essential to reduce systematic bias and measurement error by asking

content experts to assess the extent to which a survey instrument measures all aspects

of its key constructs (Polit & Beck, 2013). Such processes enhance rigour by

introducing design features to strengthen the measurement of the target outcomes

(Bruce, Pope, & Stanistreet, 2008; Polit & Beck, 2013). This section outlines the

methods used in obtaining an expert review of the draft survey instrument. The

methods used for face validity and pilot testing are described in Section 4.3.3.

4.4.1 Participants

For the purposes of this study, content experts were Registered Nurses who had

completed a Master’s Degree or higher level of education. In addition, content

experts were selected based on achieving one of the following criteria: (i) have

worked for a minimum of three years as a cancer nurse in an in-patient setting; (ii)

previous experience developing and testing survey instruments; or (iii) publications

in peer-reviewed journals or conference presentations on nursing advocacy or

providing palliative care in the acute cancer setting. These criteria are consistent with

the recommendations of Grant and Davis (1997) and Polit and Beck (2013). A

purposive sampling technique was used to invite 10 Registered Nurses identified as

content experts in cancer care, palliative care, nursing advocacy and/or survey

instrument development to review and provide feedback on the questionnaire. The

sample included three international experts, specialising in acute oncology nursing

care, nursing advocacy and palliative care. A minimum number of five content

experts were required as advised by Polit and Beck (2013).

4.4.2 Procedure

Content validity testing procedures were consistent with a previous survey

conducted in a similar population (Ahern, Gardner, & Courtney, 2016). Content

validity testing evaluated the clarity, relevance and appropriateness of the survey

instrument as assessed by a group of experts (Bruce et al., 2008; Polit & Beck, 2013).

The research student identified suitable content experts by employing the following

methods: (i) reviewing workplace records with Nurse Educator to identify cancer


nurses who had the relevant training and qualifications at a local hospital; and (ii)

reviewing relevant publications in refereed journals to identify experts in the fields of

interest. During November 2016, 10 content experts were sent an email invitation to

participate in content validity (refer to Appendix C). The following supporting

material was provided: participant information sheet (refer to Appendix D), clear

definition of the key constructs (nursing advocacy, advanced cancer and SPCS) and

reviewer instructions (refer to Appendix E); draft survey instrument (refer to

Appendix F); and a survey evaluation form soliciting the participant’s opinion (refer

to Appendix G). Content experts were asked to review the questionnaire and provide

written feedback by completing the survey evaluation form. A reminder email was

sent one week after the original invitation to all non-respondents (refer to Appendix

C). The content validity evaluation closed after 10 days.

4.4.3 Data management and analysis

Content validity data were collated and any suggested changes were reviewed

and applied in consultation with principal and associate supervisors. Standard

methods for measuring content validity, such as Content Validity Index (CVI) (Polit,

Beck, & Owen, 2007) and Content Validity Ratio (CVR) (Lawshe, 1975) were not

employed for this study, as repeated expert reviews were not possible due to time

constraints within the candidature.

4.5 PILOT TEST

Once content validity testing was completed, 10 cancer nurses were invited to

participate in face validity and pilot testing. Pilot testing and face validity was

performed simultaneously as the last step in survey development. Pilot testing was

performed to identify any survey navigational problems and verify the data output

was reported as intended. Face validity testing was undertaken to gain feedback

about the appearance, logical flow and ordering of survey items. Acceptability of the

survey instrument was assessed by asking participants to record the time taken to

complete the questionnaire and provide feedback about their survey experience. The

setting and sample, procedures, data management and analysis used in pilot and face

validity testing are described below.


4.5.1 The setting and sample

Face validity and pilot testing was conducted with a sample of postgraduate

nursing students at QUT who were representative of the target population. These

students worked as Registered Nurses providing care to patients with cancer in in-

patient settings. A purposive sampling technique was used to invite potential

participants to participate in the face validity and pilot test of the NACC

questionnaire.

4.5.2 Procedure

Face validity and pilot testing procedures were consistent with a previous

survey conducted in a similar population (Ahern et al., 2016). Face validity and pilot

testing were undertaken during November–December 2016. Potential face validity

and pilot test participants were provided with the following materials: email

invitation (detailing the purpose of the study) (refer to Appendix H); pilot test

instructions (refer to Appendix I); participant information sheet (refer to Appendix

J); and access to the online questionnaire. Participants completed the online

questionnaire as if they were part of the survey (pilot testing) and provided feedback

using the survey evaluation form (refer to Appendix K).

A minimum of five participants were required to provide a valid face validity

assessment (Polit & Beck, 2013). A reminder email was sent, one week after the

original invitation to all non-respondents, if the minimum sample size was not

reached (refer to Appendix H). The face validity evaluation of the survey closed after

10 days.

4.5.3 Data management and analysis

Completed evaluation forms were collated and any suggested changes were

reviewed and discussed within the research team. Pilot test data were collated using a

customised Key Survey© report and assessed to verify whether the filter and

branching questions worked as intended. Any modifications made post-face validity

and pilot testing informed the final instrument. Feedback regarding the acceptability


of the NACC questionnaire was considered by the research team when finalising the

instrument.

4.6 STAGE ONE RESULTS

4.6.1 Expert Panel

Six experts agreed to participate in the content validity phase of this study.

These experts included three cancer nurses who had all worked for > 12 years in

oncology/haematology in-patient settings. The remaining three experts were

employed in academic or research positions and their primary areas of expertise were

nursing advocacy, cancer nursing and/or palliative care.

Expert feedback resulted in minor modifications to the initial survey instrument

(refer to Table 4.5). The updated survey instrument was translated into an online

questionnaire, using Key Survey© software. Five ‘test runs’ were completed to check

the functionality, flow and appearance of the survey matched the design. Changes

made post-content validity testing were evaluated during face validity and pilot

testing.

4.6.2 Pilot Test

Six postgraduate nursing students agreed to participate in face validity and

pilot testing of the questionnaire. The six participants agreed that none of the survey

items were unclear and suggested only minor modifications to the survey instrument.

Face validity feedback is summarised in Table 4.5. These suggested changes

informed the final NACC questionnaire (refer to Appendix L). Pilot testing identified

minor suggestions to improve survey navigation which were applied by the research

student. The research student found the filter and branching questions worked as

intended. Two participants remarked the survey was ‘too long.’ In response, the

research student deleted four survey items that were considered ‘too similar’ to other

items measuring the same construct (refer to Table 4.5). The mean time taken to

complete the NACC questionnaire was 22.5 minutes with a range of 10 to 35

minutes.


Table 4.5.

Amendment report outlining changes and rationales after content and face validity testing of NACC questionnaire

Items of NACC Amendments Amendment applied Rationale

All survey items and sections of participant information sheet where the term ‘facilitate’ had been used.

• Replaced ‘facilitate’ with ‘advocate.’

Post-content validity testing Validity participants considered this term to be a clearer descriptor of the key construct.

Q1. a) “Which of the following best describes your employment status?”

• Add new response options:

o I am employed as an Enrolled Nurse

o I am employed as an Assistant in Nursing.

Post-face validity testing Nursing members in all types of positions will be invited to participate in the survey. This is a filter question; only Registered Nurses and nurse practitioners will be eligible to complete the remainder of the survey.

Q2. “In your current role, do you spend any time caring for patients with cancer in a hospital ward setting?”

• Replace ‘hospital ward’ with “in-patient setting.”

Post-face validity testing To improve the specificity of the question.

Q5. “In your workplace, is it within your scope of practice to directly refer to specialist palliative care services?”

• Added Post-face validity testing Validity feedback identified new potential behavioural determinant (i.e., scope of practice) that may influence cancer nursing role in referral.

Q13. c) “During treatment (i.e., chemotherapy or radiation therapy) that aims to provide disease control for advanced cancer”

• Minor wording changes: added ‘surgery’ and ‘immune therapy.’

Post-content validity testing To ensure all applicable treatment options are listed.

Q13. f) “When end-of-life care is imminent” • Minor wording changes: ‘end-of-life care’ replaced with ‘end of life’

Post-content validity testing This term is more appropriate for the context of the question.

Q.14 a)–j) • Changed order of survey items. Post-content validity testing Originally located at end of survey. Moved towards beginning of survey to improve logical flow of survey.

Q.14 h) “the patient/family needs spiritual support”

• Divide content of original survey item into two survey items.

Post-content validity testing Original survey item was a double-barrel question which would hinder analysis. Divided survey item content across two items.


Items of NACC Amendments Amendment applied Rationale

Q.15-16

• Changed order of survey items. Post-content validity testing Were originally located on p. 7 of survey. Moved these survey items towards beginning of survey to improve its logical flow.

Q.17 “It is my responsibility as a nurse to facilitate patient referrals to specialist palliative care services”

• Deleted Post-content validity testing Wording of this survey item was too similar to other survey items measuring professional role construct. Deleted item to reduce repetition.

Q.36 “When facilitating patient referrals to specialist palliative care services, I’m always optimistic about the future.”

• Deleted Post-face validity testing This statement was ambiguous and too similar to other survey items measuring optimism construct. Deleted item to reduce ambiguity and repetition.

Q.76–83 • Change rating scale (never–always) from 5-point Likert scale to 7-point Likert scale to measure survey items for theoretical constructs: ‘positive emotions’ and ‘negative emotions’

Post-face validity testing Rating scale changed to be consistent with how frequency is measured in other survey sections. Refer to Q. 48–49: 7-point Likert scale (never–always) used here to measure frequency, as per DIBQ.

Q. 85 “I have a clear plan under what circumstances I will facilitate patient referrals to specialist palliative care services.”

• Deleted Post-content validity testing Wording of this survey item too similar to other survey items measuring action planning construct. Deleted item to reduce repetition.

Q.91 “Facilitating patient referrals to specialist palliative care services is something I do without thinking.”

• Deleted Post-content validity testing Wording of this item too similar to other survey items measuring automaticity construct. Deleted item to reduce repetition.

Q. 93 “Do you have any other comments to make about the cancer nursing role in the referral decision-making process for specialist palliative care services?”

• Added Post-face validity testing Some participants stated it was difficult to generalize their experiences advocating for patient referrals to SPCS. These participants wanted to have the option to make additional comments. This comment box provides all survey respondents with the opportunity to provide any other relevant content to the survey.


4.6.3 Summary

The final NACC questionnaire (refer to Appendix L) consisted of 93 items

across four sections. Section one (items 1–11) measured the demographic factors,

including clinical experience, education and workplace characteristics. Section two

(items 12–13) measured the timing and frequency of nursing advocacy behaviours

during the past year, using the NAA-PCR subscale. Section three (items 14–92) used

the DOCNAB subscale to measure potential behavioural determinants that influence

nurses advocating for patient referrals to SPCS. Section four (item 93) allowed

respondents to contribute any other relevant information to this study.

Chapter 5: Stage Two Methods 69

Stage Two Methods

5 STAGE TWO METHODS: MAIN STUDY

5.1 INTRODUCTION

This chapter outlines Stage Two of the research plan—measuring the advocacy

actions taken by cancer nurses during the palliative care referral decision-making

process and the potential behavioural determinants and demographic factors

influencing these actions. This stage of the study involved a cross-sectional survey of

cancer nurses using the NACC questionnaire introduced in Chapter Four. This

chapter details the aims, setting, sample, design, procedure, data management, data

analysis and ethical considerations for the cross-sectional study.

5.1.1 Aims

For nurses providing care to hospitalised patients with cancer, the aims of the

study were to examine: (i) nursing advocacy behaviours associated with the palliative

care referral decision-making process, (ii) the frequency of nursing advocacy

behaviours, (iii) the potential behavioural determinants that influence these nursing

advocacy behaviours, and (iv) the timing of these nursing advocacy behaviours. The

study focussed on expanding understanding of the actions cancer nurses take to

advocate for the referral of patients with cancer to SPCS, the frequency and timing of

these actions, and the factors influencing these actions. Limited evidence exists about

the referral behaviours of cancer nurses towards SPCS. Thus, this study took an

exploratory approach to describe nursing advocacy behaviours in this national

sample using a cross-sectional survey.

70 Chapter 5: Stage Two Methods

5.1.2 Research questions

For nurses providing care to hospitalised patients with cancer:

Level 1 - Descriptive:

1. What is the frequency of nursing advocacy behaviours for patient referrals

to SPCS over a 12-month period?

2. What are the potential behavioural determinants (as defined by the domains

of the DIBQ) influencing nurses advocating for patient referrals to SPCS?

3. What are the most common time points for cancer nurses to advocate for

patient referrals to SPCS?

Level 2 – Bivariate:

4. What are the relationships between the demographic factors and potential

behavioural determinants that influence nursing advocacy behaviours and

the frequency of these behaviours?

Level 3 – Multivariable:

5. Can the frequency of nursing advocacy behaviours be explained by the

demographic factors and potential behavioural determinants that influence

these behaviours?

5.1.3 The setting & sample

The target population for this survey was Australian Registered Nurses who

provided care to patients with cancer in the in-patient setting. The accessible

population for this study was the membership of CNSA and HSANZ Nurses Group,

who fulfilled the following eligibility criteria:

• Currently employed as a Registered Nurse or nurse practitioner in Australia, and

• Provided care to patients with cancer in the in-patient setting

Participants were recruited from CNSA and HSANZ Nurses Group. The

CNSA consists of Enrolled Nurses, Registered Nurses, allied health professionals


and nursing students who are committed to promoting excellence in cancer care

through the professional contribution of nurses. The HSANZ Nurses Group consists

of Australian and New Zealand nurses who have made a commitment to promote

improved standards, interest and research in all aspects of haematology. At the time

of the survey, it was estimated that there were 1,080 and 231 Australian members in

CNSA and HSANZ Nurses Group respectively.

5.1.4 Study Design

The aims of Stage Two (refer to Section 5.1.1) were best addressed using a

quantitative approach. A qualitative interview study was not conducted as this

methodological approach was not suitable for measuring the frequency of nursing

advocacy behaviours. A cross-sectional survey is a time-efficient method to collect

data in response to the research questions outlined in Section 5.1.2. The cross-

sectional survey is a structured process designed to gather a representative picture of

the characteristics and perspectives of a sample using standardised questions.

Distinct to face-to-face structured interviews, quantitative surveys aim to explore

larger samples in a more cost-effective manner using close-ended questions.

Since the 1930s, special-purpose surveys have been widely used to address

information gaps in USA census data (Fowler, 2013). Surveys are commonly

employed to measure public opinion, political perceptions or consumer preferences

about products via newspapers, magazines, telephone, face-to-face or online (Fowler,

2013). In this study, a cross-sectional survey addressed a knowledge gap identified

by the integrative review, by examining the specific actions cancer nurses take to

advocate for patient referrals to SPCS, and the factors influencing these actions.

Where good cross-sectional survey design is employed it can produce a standardised

measurement of the perspectives of a specific population at one point in time (Nardi,

2015). This method is ideal for sensitive and personal topics and to gather

information from participants located in a geographically vast area, whilst

guaranteeing anonymity (Nardi, 2015).

Cross-sectional quantitative surveys are not without their disadvantages.

Surveys that lack methodological rigour will produce erroneous data (Fowler, 2013).

Potential limitations include: cross-sectional sampling method; the self-reporting


response method; reading ability, language, age and education level of the

respondents; restrictive nature of closed-ended questions; low return rates associated

with web-based surveys; unable to utilising probing questions; unable to confirm

respondent identity; potential to misinterpret questions; and survey length may

potentially affect survey completion rates and accuracy of responses (Fowler, 2013;

Nardi, 2015). These potential limitations were considered in the development of the

cross-sectional survey for this study. The guide to quantitative survey methods,

developed by Nardi and colleagues (2015) was used to guide the development of a

survey instrument for this study. This text provided a practical approach to designing

a quantitative survey, from developing the research questions to designing and

analysing the results of the questionnaire.

5.1.5 Procedure

During January 2017, an invitation email to participate in this survey was

simultaneously distributed by administration officers of CNSA and HSANZ to their

memberships. A hyperlink to the participant information sheet outlining the purpose,

benefits and risks of this study was contained within the email invitation. To

distribute the online survey, a hyperlink to the online survey in the form of a master

URL was used. Use of a master URL permits the survey to be completed multiple

times on the same computer. This survey function was activated to allow Registered

Nurses to use the same computer to complete the survey as computers are often

shared in the clinical setting.

Participants completed and submitted the DOCNAB questionnaire online. To

achieve a maximal response rate, a reminder email was sent to all potential

participants two weeks after the original invitation. The survey was available online

for three weeks.

Filter questions were used to automatically direct those who did not meet the

eligibility criteria (outlined in Section 5.1.3) to the ‘thank you’ page of the survey.

Branching logic was employed to ensure only those respondents who confirmed

specific details (e.g., employment status, previously worked for SPCS) were asked

the applicable sub-questions. Survey design ensured respondents had to provide a

response to each item to progress to the next page. Respondents could not go back


and change their answers after advancing to the next survey page. The survey was

divided into 28 pages, including a ‘thank you’ page. Upon completion of the survey,

respondents were provided with the option of entering a lucky prize draw (i.e. chance

to win one of five Coles Group & Myer gift cards, valued at $50 each).

5.1.6 Data management

The survey data were collected and stored using Key Survey© Version 8.7.5

(WorldAPP Key Survey, 2015). Quantitative data were managed using the export

functions of Key Survey© and several pre-determined coding procedures. Free-text

data collected from the open-ended question (refer to Appendix L, Q. 93) were

collected to inform a future study that was not within the scope of this Masters

project. A log of decisions regarding data cleaning was maintained. An Australian

Bureau of Statistics (ABS) Remoteness Area (RA) code was manually allocated to

the workplace postcode (refer to Appendix L, Q. 11) of each respondent to identify

their geographical location (Australian Bureau of Statistics, 2013). These RA codes

were applied using an address coding tool on the Australian Government Department

of Health website (Australian Government Department of Health, 2016). Once the

RA code had been allocated, all workplace postcodes were deleted from the database

to protect the identity of participants.

5.1.7 Descriptive statistical analysis

Survey data were analysed using IBM SPSS® Statistics Version 23. Available

case analysis was performed for descriptive data, which is consistent with Pigott

(2001) recommendations and similar studies (Barrett & Yates, 2002; Wallace et al.,

2015). The continuous variables were the three summated scales for nursing

advocacy behaviours (analysing, counselling and responding), years of experience as

cancer nurse, years of experience as SPCS nurse and Likert scales for 18 DIBQ-

based domains (DOCNAB subscale). Measure of central tendency and dispersion

were analysed by calculating the mean, median, 5% trimmed mean, range,

interquartile range and standard deviation for each continuous variable. Data for the

Likert scales in section three of the NACC questionnaire were analysed individually,

using counts, percentages and frequency distributions.


Data were classified as normally distributed if they met the assumptions of the

central limit theorem (Field, 2013), sampling distribution was within 3+ standard

deviations (SD) of the mean (Nardi, 2015); skewness and kurtosis values were within

+3 and mean, median and mode values were approximately equal. Descriptive

statistics and boxplots were assessed to identify any extreme values or outliers.

Continuous variables were reported as means and SD if data were normally

distributed. However, if data were not normally distributed, median and range were

reported. Frequency of advocating for referrals at specific time points and frequency

of nursing advocacy behaviours (refer to Appendix L, Q. 12 and Q. 13) were scored

never–always (scoring system: never = 0, rarely = 1, sometimes = 2, often = 3,

always = 4). Three summated scales consisting of types of nursing advocacy

behaviours were formed on the basis of previous research: analysing, counselling

and responding (refer to Table 4.1) (Vaartio et al., 2009a, 2009b; Vaartio-Rajalin &

Leino-Kilpi, 2011). Mean frequency score, actual and potential range were calculated

for each summated scale.

Items in the DOCNAB subscale were analysed as outlined by the developers of

the DIBQ who published their analysis methods in Huijg et al. (2015). Mean scores

and Cronbach’s alpha values were calculated for each group of survey items

measuring the 18 domains of DIBQ (Huijg et al., 2015). Mean scores for each

domain were interpreted as a positive/negative influence on cancer nurses advocating

for patient referrals to SPCS in in-patient setting, as recommended by Huijg et al.

(2015). Cronbach’s alpha values provided a measure of internal consistency for each

DIBQ-based domain in the DOCNAB subscale for comparison with the original study

(Huijg et al., 2014). Data from the categorical variables were analysed individually,

using counts, percentages and frequency distributions. Categorical variables

included: employment status, type of SPCS available, primary focus of nursing role,

current area/s of practice, highest level of education completed in nursing, education

completed in palliative care, previously worked for SPCS, within scope of practice to

directly refer and remoteness of workplace location.

5.1.8 Bivariate statistical analysis

Bivariate statistics were used to describe the relationships between each

independent (18 DIBQ-based domains, 11 demographic-based factors) and each


dependent (summated scales for frequency of analysing, counselling and responding

behaviours) variable. The 11 demographic factors included: employment status,

primary focus of current nursing role, workplace location, postgraduate nursing

education, palliative care specific education, nurse practitioner endorsement, within

scope of practice to refer to SPCS, type of SPCS available in workplace, previously

worked for SPCS, years of experience as cancer nurse and years of experience as

SPCS nurse. For the purposes of bivariate analyses, some variables were transformed

in order to combine categories and create dichotomised variables. For instance, the

variable, types of palliative care specific education completed was dichotomised into

completed any palliative care specific education and did not complete any palliative

care specific education.

The 18 DIBQ-based domains were knowledge, skills, social/professional role

and identity, beliefs about capabilities, optimism, beliefs about consequences,

intentions, goals, innovation, socio-political context, organization, patient,

innovation strategy, social influences, positive emotions, negative emotions,

behavioral regulation and nature of behaviors. To reduce the likelihood of model

overfitting, all 18 DIBQ-based domains were transformed into three exclusive

summated scales—total capabilities, total opportunities and total motivations

score—based on the COM-B model (Michie et al., 2011). The amount of data

missing about relationships between variables and missing data patterns were

measured using case processing summaries in SPSS® (Pallant, 2016; Pigott, 2001).

Due to the exploratory nature of this study, if a respondent missed all items in at least

one domain of interest, all their responses were excluded from bivariate and

multivariate analysis.

Pearson correlation coefficient tests were calculated to measure the relationship

between an independent and dependent variable, where both were measured as

continuous variables. T-tests were calculated to measure the relationship between a

continuous dependent variable and a categorical independent variable with two

groups. When measuring the relationship between a continuous dependent variable

and a categorical independent variable with three or more groups, an analysis of

variance (ANOVA) was conducted.

Plots were used to examine the relationships between variables and identify

outliers. Scatterplots were used to display two continuous variables, whereas side-by-


side box plots were used to examine continuous outcomes with categorical groups. If

scatterplots and parameter estimates indicated a quadratic relationship may exist

between variables, regression modelling (y = x + x2) was undertaken to determine the

nature of the relationship. If outliers were identified, a sensitivity analysis was

undertaken and models were run with and without outliers. Bootstrapping was

employed to provide reliable parameter estimates (bootstrapping: calculated 1000

bootstrap samples with a 95% bias corrected and accelerated confidence interval)

(Field, 2013). If there were no appreciable differences between original parameter

estimates and bootstrapped parameter estimates, only original results were reported.

For each of the bivariate statistical tests undertaken, a p-value of less than 0.05 was

selected as the cut-off point for reporting statistical significance (Nardi, 2015).

Significant influencing domains and factors (p < 0.05) identified in the bivariate

analysis informed subsequent multivariable modelling.

5.1.9 Multivariable statistical analysis

Multiple linear regression (n = 110) was conducted to determine the factors

that best explain the frequency of cancer nursing advocacy behaviours and the

relative contribution of each of the factors (Field, 2013; Pallant, 2016). Three

summated scales for self-reported frequency of cancer nursing advocacy behaviours

were entered as the dependent variables (analysing, counselling and responding

behaviours). As recommended by Pallant (2016), sound theoretical reasoning

informed this multivariate analysis plan. The criteria for selection of independent

variables from the bivariate analyses for inclusion in the multivariate analyses were

based on the following: a p-value of < 0.05 for bivariate relationships with at least

two of the dependent variables (summated scales for analysing, counselling and

responding behaviours).

The cases-to-independent variables ratio for this sample (n = 110, 7

independent variables) was sufficient for testing the multiple correlation for all

multivariate models, based on a formula (N > 50 + 8m (where m = number of

independent variables)) recommended by Tabachnick (2013). Assumptions for

multiple linear regression models were assessed as outlined by Field (2013). All

selected independent variables were initially entered into standard multiple linear

regression for each of the dependent variables. Outliers were identified by assessing


casewise diagnostics and scatterplots of standardised residuals for cases outside of ±

3.3 for all regression models (Tabachnick, 2013). Bootstrapping was employed to

provide reliable parameter estimates when assumptions were not met (bootstrapping:

calculated 1000 bootstrap samples with a 95% bias corrected and accelerated

confidence interval) (Field, 2013). If there were no appreciable differences between

original parameter estimates and bootstrapped parameter estimates, only original

results were reported. Backward stepwise regression was chosen as the method of

analysis as it is well suited to exploratory model building, minimises suppressor

effects and does not require any theoretical or empirical grounds for entering

variables in a specific order (Field, 2013; Pallant, 2016). All selected independent

variables were simultaneously entered into a regression model and sequentially

removed if they met the set removal criteria (i.e., remove independent variable with

smallest partial correlation with the dependent variable). For each successive

regression model, the independent variable that made the least contribution to the

model was removed and a new model was calculated with the remaining variables

(Field, 2013). This process was repeated until no variables in the equation met the

removal criteria (Field, 2013; Pallant, 2016). The final model chosen to explain how

demographic factors and behavioural determinants influence each of the dependent

variables (frequency of analysing, counselling and responding advocacy behaviours)

was the most parsimonious model, assessed using criteria outlined by Field (2013).

5.2 ETHICAL CONSIDERATIONS

A low and negligible risk ethics application was submitted to QUT Human

Research Ethics Committee (UHREC) on 26th September 2016 and approved on

10th November 2016 (refer to Appendix M). Minor amendments to the survey

instrument and related participant information sheets were approved on 19th

December 2016 (refer to Appendix N). In addition, the research student sought in-

principle agreement to distribute this questionnaire via the memberships of CNSA

and HSANZ Nurses Group. The questionnaire was assessed prior to distribution by

CNSA Research Standing Committee to ensure it met membership requirements.

Both professional societies agreed to distribute the questionnaire (refer to Appendix

O and Appendix P).


Care was taken during the planning and conduct of this study to maximise the

benefits of the study and minimise any potential risks (NHMRC, 2007/2014 update).

Ethical considerations specific to this study included: the potential risk of discomfort

to participants caused by reviewing or completing some of the survey items; the

possible inconvenience of completing a survey; consent, anonymity and

confidentiality; any pre-existing relationships between validity and pilot test

participants and members of the research team; secure storage of data; and

dissemination of findings. These potential risks were outlined to participants in the

participant information sheet for each phase of the study.

Potential risks were minimised by employing the following strategies.

Participation in all study phases was voluntary and participants could withdraw at

any time without penalty. Participants were provided with ample time to complete

the survey evaluation form and/or online questionnaire. Participants were assured

anonymity and confidentiality. Consistent with National Health and Medical

Research Council (NHMRC) guidelines (2007), identifying data (i.e., the workplace

postcode of participants) were assigned a code during data analysis and then deleted

from the dataset.

The names of individual persons were not required during any phase of this

study. However, potential face validity participants were identified by the research

student and invited to participate in pilot testing of the initial NACC questionnaire.

To ensure participant autonomy and confidentiality, the face validity and pilot test

participant information sheet clearly stated the decision to participate or not

participate would in no way impact on participants’ current or future relationships

with the Master of Applied Science (Research) student, supervisory team or QUT.

Lucky prize draw data were stored separately to the questionnaire data. The

lucky prize draw data were stored on a password-protected database with access

limited to research team only. Records relating to the management and the conduct

of the lucky prize draw will be retained for five years, in accordance with QUT OREI

Guideline – Research Methods – Incentivising Participants – Game of Chance and

Game of Skill (2015). Winners of the lucky prize draw were notified using the email

addresses provided by the participants. Once the winners were notified and provided

with their prize, individually identifiable data collected for the lucky prize draw were

permanently deleted from the system.


The management and the storage of data for this study conformed to the

requirements of the NHMRC National Statement on Ethical Conduct in Human

Research guidelines (NHMRC, 2007/2014 update). Hardcopy research data were

stored in a locked filing cabinet. All electronic data were de-identified and collected

on a password-protected database (Key Survey©) with access limited to members of

the research team. Data used in conference presentations and publications were

reported as aggregate data to ensure confidentiality. After aggregate results have

been published in a peer-reviewed journal, a summary of results will be sent to the

administration officers of CNSA and HSANZ for distribution to potential

participants in this study. All data will be archived after study completion and

destroyed 15 years after academic publication. By following these steps, the ethical

principles of justice, beneficence, non-maleficence and human dignity were

respected throughout this study.

5.3 SUMMARY

A quantitative approach using a cross-sectional survey design was utilised in

this study. This chapter has provided a broad overview of ethical considerations and

methods employed in each phase of this study. Subsequent chapters present and

discuss the results of the cross-sectional study.

Chapter 6: Stage Two Results 81

Chapter 6: Stage Two Results

6.1 INTRODUCTION

This chapter presents the results of the cross-sectional survey. Sample

characteristics are presented in Section 6.2. Findings are presented in sections 6.3 to

6.8. Sections 6.3 to 6.6 present the descriptive analyses. Section 6.7 presents the

results of the bivariate analyses examining the relationships between a number of

potential explanatory variables and specific cancer nursing advocacy behaviours.

Section 6.8 presents the main findings of the multivariate analyses investigating the

predictors of factors that promote cancer nurses to advocate for referrals to SPCS in

the in-patient setting.

6.2 SAMPLE CHARACTERISTICS FOR THE CROSS-SECTIONAL SURVEY

6.2.3 Demographic/education/clinical experience characteristics

A total of 1,311 cancer nurses, comprising of 1,080 CNSA members and 231

HSANZ Nurses Group members were invited to participate in the online survey. Of

the 154 who began the survey, 23 did not meet the inclusion criteria and one

respondent declined to participate, resulting in 130 responses for analysis

(completion rate of 9.9%). One survey response contained an anomaly in the data,

reporting zero years of experience working as a cancer nurse. The decision was made

to include this survey response in data analysis as the respondent met the study

inclusion criteria and completed all other survey items. Thus, the descriptive analysis

for this study was based on 130 respondents. A flowchart detailing survey

recruitment and responses is provided in Figure 6-1.

82 Chapter 6: Stage Two Results

Excluded Declined to be contacted for

research purposes n = 0

CNSA members

n = 1,080

HSANZ Nurses Group Australian members

n = 231

Responded to online survey n = 154

Invited to participate via email

Initial invitation: n = 1,311 Reminder invitation: n = 1,311

Not eligible: Did not provide care to in-patients with cancer n = 22 Unemployed n = 1

Declined to consent: Declined to consent n = 1

Responses for analysis n = 130

Figure 6-1. Flowchart of survey participants.

Table 6.1 summarises the demographic, clinical experience, education and

workplace characteristics of the survey respondents. One hundred and thirty

Registered Nurses who were members of CNSA and/or HSANZ Nurses Group and

spent some time caring for in-patients with cancer completed the survey. Clinical

experience working as a cancer nurse ranged from 0 to 40 years (n = 127, M = 13.86,

SD = 8.82). The majority of respondents (n = 81/127, 63.8%) had > 10 years of

experience working as cancer nurses, which is consistent with similar studies with


this population (Gosselin-Acomb et al., 2007; McMillan et al., 2016). The sample (n

= 125) was well-educated with 77.6% of respondents having completed postgraduate

nursing studies. The palliative care specific education levels (n = 129) varied from

having completed workshops/seminars/conferences (n = 89, 69.0%) to having

completed postgraduate palliative care studies (n = 33, 25.6%). A minority reported

they had not completed any palliative care specific education (n = 16/129, 12.4%).

Overall, the majority reported they had completed workshops/seminars/conferences

(n = 89/129, 69.0%), hospital in-service programs (n = 66/129, 51.2%) and/or self-

directed education (n = 64/129, 49.6%) on palliative care.

Respondents reported working in a variety of clinical specialties (n = 129),

including medical oncology (n = 86, 66.7%), haematology and/or bone marrow

transplant (n = 54, 41.9%), radiation oncology (n = 25, 19.4%), surgical oncology (n

= 17, 13.2%) and other areas (n = 13, 10.1%). Most respondents worked in

Queensland (n = 37/122, 30.3%), New South Wales (n = 26/122, 21.3%) or Victoria

(n = 24/122, 19.7%), with the remaining respondents practicing in other Australian

states or territories (n = 35/122, 28.7%). The majority of participants worked full-

time (n = 79/130, 60.8%), were employed in major cities in Australia (n = 92/122,

75.4%) with access to a dedicated SPCS as part of their hospital/health service (n =

113/130, 86.9%) and the scope of practice to directly refer to SPCS (n = 83/129,

64.3%). More than one third of the sample (n = 42/125, 33.6%) had previously

worked for SPCS, with median years of experience of two years (n = 40, range =

0.08–21). A higher proportion of cancer nurses had experience working for a

palliative care service in this sample when compared with a similar study (Nakazawa

et al., 2009). There was no national data available on the number or characteristics of

Australian nurses working in oncology and/or haematology settings to enable

comparison with data from the current study. Similarly, CNSA and HSANZ do not

collect data on the characteristics of their memberships to enable assessment of the

representativeness of the sample in this study. The notable number of participants

who had previously worked in a palliative care service does suggest, however, that

the respondents in this study are likely to have more experience and a stronger

interest in palliative care issues than the general cancer nursing population.


Table 6.1. Demographic characteristics of the survey respondents

Characteristics Participants

N (%)Employment status (n = 130)

Full-time

79 (60.8)Part-time 51 (39.2)

Current area of practice (n = 129)Medical oncology 86 (66.7)Haematology and/or bone marrow transplant 54 (41.9)Radiation oncology 25 (19.4)Surgical oncology 17 (13.2)Other 13 (10.1)

Primary focus current nursing role (n = 129)Clinical 95 (73.6)Education 14 (10.9)Research 8 (6.2)Management 12 (9.3)

Geographical location of workplace (n = 122)Queensland 37 (30.3)New South Wales 26 (21.3)Australian Capital Territory 4 (3.3)Victoria 24 (19.7)Tasmania 6 (4.9)South Australia 12 (9.8)Northern Territory 2 (1.6)Western Australia 11 (9.0)

Remoteness of workplace (n = 122)*Major city 92 (75.4)Inner regional 22 (18.0)Outer regional 5 (4.1)Remote 3 (2.5)

Highest level of education completed in nursing (n = 125)Hospital certificate 5 (4.0)Bachelor’s degree 23 (18.4)Postgraduate certificate 30 (24.0)Postgraduate diploma 27 (21.6)Master’s degree 40 (32.0)

Completion of palliative care specific education (n = 129)Undergraduate education 22 (17.1)Workshops/seminars/conferences 89 (69.0)Hospital in-service programs 66 (51.2)Clinical placements as an RN 29 (22.5)Self-directed education 64 (49.6)Postgraduate certificate 22 (17.1)Postgraduate diploma 7 (5.4)Master’s degree (coursework or research) 4 (3.1)Not completed any palliative care specific education

16 (12.4)

Nurse practitioner endorsement (n = 130)Yes 6 (4.6)No 124 (95.4)

Within your scope of practice to directly refer to SPCS (n = 129)

Yes 83 (64.3)No 46 (35.7)

Types of SPCS available in hospital/health service (n = 130)

Dedicated SPCS within hospital/health service 113 (86.9)Access to external SPCS 17 (13.1)

Previously worked for SPCS (n = 125)Yes 42 (33.6)No 83 (66.4)


Characteristics Participants

Median (Range) Years of experience working as a SPCS nurse (n = 40)** 2 (0.08-21)

M (SD)

Years of experience working as a cancer nurse (n = 127) 13.86 (8.82)

Note. Because of rounding, percentages may not equal 100%; *Remoteness of workplace classified using Australian Standard Geographical Classification–Remoteness Areas (ASGC-RA) (Australian Government Department of Health, 2016); **two respondents with experience working for SPCS did complete this question; n = number of participants; M = mean; SD = standard deviation; RN = Registered Nurse; SPCS = Specialist Palliative Care Services.


6.3 SCALE RELIABILITY AND MISSING DATA

Table 6.2 shows the Cronbach’s alpha for all domains of the DOCNAB

subscale in the NACC questionnaire. The original DIBQ assessed potential

behavioural determinants using 18 subscales (domains) and various 7-point Likert

scales (Huijg et al., 2014). Cronbach’s alpha internal consistency of the subscale

coefficients for the original DIBQ ranged from 0.68–0.93 (Huijg et al., 2014). In this

study, Cronbach’s alpha values for the 18 DIBQ-based domains of the DOCNAB

subscale ranged from 0.67 (domain patient) to 0.96 (domain behavioral regulation)

(refer to Table 6.2). These results are consistent with the internal consistency values

for the original DIBQ (Huijg et al., 2014). Cronbach’s alpha values demonstrated

good (> 0.80) or excellent (> 0.90) internal consistency for measuring 11

(knowledge, skills, social/professional role and identity, beliefs about capabilities,

goals, organization, innovation strategy, social influences, positive emotions,

behavioral regulation and nature of behaviors) domains in this study (George &

Mallery, 2003; Gliem & Gliem, 2003). All Cronbach’s alphas for the 18 domains of

the DOCNAB subscale were acceptable (> 0.70) except for the domain patient, using

the cut-off point recommended by George and Mallery (2003).

With regards to missing data, 15.4% of the sample (n = 20/130) had missing

data for at least one DIBQ-based domain. Missing data analysis showed there were

no missing data patterns between respondent groups. However, the latter sections of

the questionnaire were most likely to have missing data. In order to measure the

relationships between all potential behavioural determinants and nursing advocacy

behaviours, only complete cases (n = 110) were utilised for bivariate and multivariate

analyses.


Table 6.2.

Descriptive statistics for all 18 DIBQ-based domains of the NACC questionnaire

Domain (number of items) n M SD α Range Skew Potential Actual

D1 knowledge (4) 120 23.30 5.23 0.93 4-28 5.0-28.0 -1.25

D2 skills (4) 118 21.19 5.22 0.86 4-28 6.0-28.0 -0.97

D3 social/professional role & identity (2) 120 13.08 1.42 0.93 2-14 4.0-14.0 -2.89

D4 beliefs about capabilities (10) 118 54.24 10.33 0.93 10-70 18.0-70.0 -0.92

D5 optimism (2) 117 11.69 1.80 0.71 2-14 5.0-14.0 -0.84

D6 beliefs about consequences (9) 114 49.85 5.73 0.78 9-63 30.0-63.0 -0.67

D7 intentions (2) 114 11.18 2.19 0.71 2-14 5.0-14.0 -0.95

D8 goals (2) 114 7.04 2.53 0.92 2-14 2.0-14.0 0.43

D9 innovation (5) 113 28.04 4.46 0.76 5-35 16.0-35.0 -0.44

D10 socio-political context (3) 113 12.77 3.44 0.76 3-21 6.0-21.0 -0.73

D11 organization (5) 113 26.38 5.75 0.85 5-35 10-35.0 -0.59

D12 patient (2) 112 8.93 3.03 0.67 2-14 2.0-14.0 -0.32

D13 innovation strategy (4) 112 16.27 5.17 0.82 4-28 4.0-28.0 -0.25

D14 social influences (7) 111 37.52 5.85 0.85 7-49 13.0-49.0 -0.85

D15 positive emotions (3) 110 15.87 3.56 0.82 3-21 8.0-21.0 -0.52

D16 negative emotions (5) 110 9.62 3.55 0.78 5-35 5.0-21.0 0.93

D17 behavioral regulation (5) 110 25.35 6.67 0.96 5-35 5.0-35.0 -0.80

D18 nature of the behaviours (13) 109 74.87 9.83 0.87 13-91 50.0-91.0 -0.54

Note. DIBQ = Determinants of Implementation Behaviour Questionnaire; NACC = Nursing Advocacy in Cancer Care questionnaire; D = domain; n = number of participants; M = mean; SD = standard deviation; α = Cronbach’s alpha.


6.4 FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD

Level 1 – Descriptive: Question 1. What is the frequency of nursing

advocacy behaviours for patient referrals to SPCS over a 12-month period?

Frequency of nursing advocacy behaviours for patient referrals to SPCS was

measured using a five-point Likert scale (never–always). Advocating for patient

referrals to SPCS is not an isolated behaviour but rather a series of actions. Table 6.3

summarises the number of cancer nurses who performed specific nursing advocacy

behaviours in the past year, using the following categories and scoring system: never

(0); rarely (1); sometimes (2); often (3); and always (4). Mean frequency scores,

standard deviations and potential range are reported for all nursing advocacy

behaviours reported in the last 12 months. Three summated scales were formed on

the basis of previous research: analysing, counselling and responding behaviours

(Vaartio et al., 2009a; Vaartio-Rajalin & Leino-Kilpi, 2011). All frequency of

nursing advocacy behaviour scores were negatively skewed, except for one item:

independently refer patients to SPCS.

More than one third of the respondents (cumulative percentage: n = 905/1210,

74.79%) reported often or always performing all nursing advocacy behaviours listed

within the past year, except for the independently refer patients to SPCS item. The

three most frequently reported nursing advocacy behaviours always or often

performed were empower patients to make informed decisions about their treatment

options (n = 100/121, 82.64%), identify the need for patient referrals to SPCS (n =

98/121, 80.99%) and provide patients with information about their right to make

informed decisions about their healthcare (n = 98/121, 80.99%). In contrast, the

three least frequently reported nursing advocacy behaviours always or often

performed were provide patients with information about SPCS (n = 78/121, 64.46%),

ask patients to identify their goals of care (n = 73/121, 60.33%) and independently

refer patients to SPCS (n = 51/121, 42.15%).


Table 6.3

Frequency of behaviours by nurses when advocating for patient referrals to SPCS in the past year

Note. Because of rounding, percentages may not equal 100%, M = mean; SD = standard deviation; SPCS = Specialist Palliative Care Services.

Types of behaviours Participants (n = 121) N (%)

M (SD) Never Rarely Sometimes Often Always Summated scores M (SD)

Potential range

Analysing

Assess whether patients have a good understanding of their treatment options 3.06 (0.95) 4 (3.3) 2 (1.7) 21 (17.4) 50 (41.3) 44 (36.4)

11.49 (3.00) 0–16 Assess whether patients have a good understanding of their prognosis 2.85 (0.89) 3 (2.5) 2 (1.7) 34 (28.1) 53 (43.8) 29 (24.0)

Ask patients to identify their goals of care 2.56 (0.92) 5 (4.1) 8 (6.6) 35 (28.9) 60 (49.6) 13 (10.7)

Identify the need for patient referrals to SPCS 3.02 (0.87) 3 (2.5) 3 (2.5) 17 (14.0) 64 (52.9) 34 (28.1)

Counselling


3.02 (0.90) 2 (1.7) 7 (5.8) 14 (11.6) 61 (50.4) 37 (30.6)

14.72 (3.45) 0–20

Provide patients with information about SPCS 2.68 (0.97) 5 (4.1) 7 (5.8) 31 (25.6) 57 (47.1) 21 (17.4)

Empower patients to make informed decisions about their treatment options 3.11 (0.86) 2 (1.7) 4 (3.3) 15 (12.4) 58 (47.9) 42 (34.7)

Discuss with nursing colleagues the need to refer patients to SPCS 2.98 (0.83) 2 (1.7) 4 (3.3) 19 (15.7) 66 (54.5) 30 (24.8)

Discuss with colleagues in the healthcare team the need to refer patients to SPCS

2.93 (0.79) 1 (0.8) 4 (3.3) 24 (19.8) 65 (53.7) 27 (22.3)

Responding

Advocate for patient referrals to SPCS 2.97 (0.84) 1 (0.8) 6 (5.0) 20 (16.5) 63 (52.1) 31 (25.6) 4.85

(1.87) 0–8

Independently refer patients to SPCS 1.88 (1.35) 26 (21.5) 26 (21.5) 18 (14.9) 38 (31.4) 13 (10.7)


The series of behaviours involved in advocating for patient referrals to SPCS in

the in-patient setting are listed in Table 6.3. In this sample (n = 121), the two most

commonly reported types of nursing advocacy behaviours always performed were

counselling (M = 14.72, SD = 3.45, 25.95%) and analysing (M = 11.49, SD = 3.00,

24.79%) behaviours. In contrast, only 18.18% of this sample reported always

performing responding behaviours (M = 4.85, SD = 1.87). Overall, responses

indicated nurses least frequently performed a specific type of responding behaviour

with 43.0% never or rarely independently referring patients to SPCS in the past year.

6.5 FACTORS INFLUENCING NURSING ADVOCACY BEHAVIOURS

Level 1 – Descriptive: Question 2. What are the potential behavioural

determinants (as defined by the domains of the DIBQ) influencing nurses

advocating for patient referrals to SPCS?

Table 6.2 shows results for the descriptive analyses for all domains. Mean

scores indicated nurses generally had favourable perspectives about advocating for

patient referrals to SPCS. Highest mean scores were found for the domains nature of

the behaviors (M = 74.87), beliefs about capabilities (M = 54.24) and beliefs about

consequences (M = 49.85). These results indicate respondents’ individual beliefs

have a positive influence on their nursing advocacy behaviours and their recognition

of referral cues and automatic actions promote these behaviours. Lowest mean scores

were reported for the domains goals (M = 7.04), patient (M = 8.93) and negative

emotions (M = 9.62). These results suggest respondents are uncertain about whether

patient access to SPCS needs to be improved. In addition, these results indicate

respondents seldom experienced negative emotions and sometimes found other

nursing tasks were a greater priority or more urgent than advocating for patient

referrals to SPCS.


6.6 FREQUENCY OF ADVOCATING FOR REFERRALS TO SPCS AT SPECIFIC TIME POINTS

Level 1 – Descriptive: Question 4. What are the most common time points

for cancer nurses to advocate for patient referrals to SPCS?

Table 6.4 summarises how often cancer nurses (n = 121) advocated for patient

referrals to SPCS at specific time points during the past year. Most survey

respondents always or often advocated for referral when end of life was imminent

(78.5%) and often advocated for referral when no further curative treatment could be

offered for advanced cancer (79.3%). Respondents rarely or never advocated for

referral at diagnosis of cancer, regardless of prognosis (68.6%). Respondents

generally reported more frequently advocating for patient referrals to SPCS when no

further curative treatment could be offered for advanced cancer (M = 3.09), when

compared to mean frequency scores for advocating during treatment for advanced

cancer (M = 2.18) and at diagnosis of advanced cancer (M = 2.41) (high scores

represent higher frequency of nursing advocacy behaviours performed within the

past year). Overall, there was a tendency to often or always advocate for referrals at

later stages in the disease trajectory, such as when curative treatment (79.3%) or

supportive treatments had stopped (70.3%) or when end of life was imminent

(78.5%).


Table 6.4.

Frequency of cancer nurses advocating for patient referrals to SPCS at specific time points

Specific time points Participants (n = 121)

N (%)

M (SD) Never Rarely Sometimes Often Always

1. At diagnosis of cancer, regardless of prognosis 1.11 (0.95) 36 (29.8) 47 (38.8) 28 (23.1) 9 (7.4) 1 (0.8)

2. At diagnosis of advanced cancer 2.41 (0.96) 6 (5.0) 11 (9.1) 44 (36.4) 48 (39.7) 12 (9.9)

3. During treatment for advanced cancer 2.18 (0.92) 9 (7.4) 12 (9.9) 51 (42.1) 46 (38.0) 3 (2.5)

4. When no further curative treatment can be offered for advanced cancer 3.09 (0.95) 4 (3.3) 2 (1.7) 19 (15.7) 50 (41.3) 46 (38.0)

5. When supportive treatments have been stopped 2.98 (1.12) 6 (5.0) 5 (4.1) 25 (20.7) 34 (28.1) 51 (42.1)

6. When end of life is imminent 3.18 (1.15) 7 (5.8) 5 (4.1) 14 (11.6) 28 (23.1) 67 (55.4)

Note. Because of rounding, percentages may not equal 100%; M = mean; SD = standard deviation; SPCS = Specialist Palliative Care Services.


6.7 RELATIONSHIPS BETWEEN DEMOGRAPHIC FACTORS, POTENTIAL BEHAVIOURAL DETERMINANTS AND NURSING ADVOCACY BEHAVIOURS

Level 2 – Bivariate: Question 5. What are the relationships between the

demographic factors and potential behavioural determinants that influence

nursing advocacy behaviours and the frequency of these behaviours?

In Chapter Two, the 14 domains of the refined TDF were linked to three

categories of potential behavioural determinants: capabilities, opportunities and

motivations (refer to Table 2.1) (Cane et al., 2012; Michie et al., 2014). For the

purposes of analysis, the 18 domains of the DOCNAB subscale were grouped based

on the same principles. Huijg et al. (2014) newly developed innovation, socio-

political context, organization, patient and innovation strategy domains were re-

grouped into their original overarching domain, environmental context and resources

(Cane et al., 2012; Michie et al., 2005). Positive emotions and negative emotions

were also re-grouped into their parent domain, emotions (Cane et al., 2012; Michie et

al., 2005). The total capabilities, total opportunities and total motivations scores

were calculated using the sum of all related domain scores, as outlined by Michie et

al. (2014) (refer to Table 6.5).

Complete case analysis was employed for bivariate and multivariate analyses

as all incomplete survey responses (n = 20) had missed all items in at least one

domain of interest. Data were not normally distributed for total opportunities and

total motivations scores. Bootstrapping was performed, however as no appreciable

differences were found between original and bootstrapped parameter estimates, only

the original results are reported. Table 6.5 presents the results of the descriptive

analyses for total capabilities, total opportunities and total motivations scores. The

total capabilities, total opportunities and total motivations scores were used to

measure the relationship between potential behavioural determinants and nursing

advocacy behaviours.


Table 6.5

Descriptive statistics for total capabilities, total opportunities and motivations scores (n = 110)

Category M 95% CI a SD Range

Potential Actual

Total capabilities score 145.00 [140.94, 149.06] 21.49 26–182 87–179

Total opportunities score 129.94 [125.90, 133.97] 21.36 26–182 54–174

Total motivations score 172.90 [169.70, 176.10] 16.95 35–245 120–203

Note. M = mean; SD = standard deviation; a 95% CI = 95% confidence interval for mean.

Table 6.6.

Correlations between the frequency of nursing advocacy behaviours and selected potential behavioural determinants and demographic factors (n = 110)

Analysing behaviours Counselling behaviours Responding behaviours

Potential behavioural determinants

Total capabilities score 0.46* 0.49* 0.55*

Total opportunities score 0.34* 0.38* 0.44*

Total motivations score 0.49* 0.52* 0.53*

Demographic factors

Years of experience as SPCS nurse (n = 36) -0.025 -0.159 -0.049

Years of experience as cancer nurse 0.25* 0.18 0.28*

Note. *p < 0.05; SPCS = Specialist Palliative Care Services.


Pearson correlation coefficient tests were conducted to examine whether any

relationships existed between demographic factors (years of experience as cancer

nurse, years of experience as SPCS nurse), potential behavioural determinants (total

capabilities, total opportunities and total motivations scores) and the frequency of

nursing advocacy behaviours (classified as analysing, counselling and responding

behaviours). There were outliers in the data, as assessed by inspection of the

scatterplots for analysing behaviours and total opportunities score, counselling

behaviours and total opportunities score, and analysing behaviours and total

motivations score. Sensitivity analyses found no appreciable differences between

correlations with outliers and correlations without outliers. Regression models were

used to examine whether quadratic relationships existed between years of experience

as SPCS nurse and analysing, counselling and responding behaviours. Bivariate

analyses identified that these relationships were not quadratic (refer to Appendix Q,

Appendix R and Appendix S).

Table 6.6 presents a correlation matrix to illustrate associations between

demographic factors, potential behavioural determinants and analysing, counselling

and responding behaviours. Analysing behaviours were moderately positively

correlated with total capabilities score, total opportunities score and total

motivations score. Analysing behaviours also had a small positive correlation with

years of experience as a cancer nurse. Counselling behaviours were positively

correlated with total capabilities score (r = 0.49), total opportunities score (r = 0.38)

and total motivations score (r = 0.52). Responding behaviours were positively

correlated with total capabilities score (r = 0.55), total opportunities score (r = 0.44),

total motivations score (r = 0.53) and years of experience as a cancer nurse (r =

0.28).

T-tests were conducted to examine the differences between groups

(employment status, workplace location, postgraduate nursing education, palliative

care specific education, nurse practitioner endorsement, within scope to refer to

SPCS, type of SPCS available and previously worked for SPCS) (refer to Table 6.7).

There were outliers in the data for all relationships except for responding behaviours

and employment status, responding behaviours and postgraduate nursing education

and responding behaviours and previously worked for SPCS, as assessed by the side-

by-side box plots. Bootstrapping and sensitivity analyses found no appreciable


differences between t-test results with outliers and t-tests without outliers, thus

outliers were retained for analysis. One-way ANOVA tests were conducted to

examine differences between three or more respondent groups for primary focus of

current nursing role (refer to Table 6.7). Respondents living in metropolitan areas

performed analysing, counselling and responding behaviours less frequently,

compared to respondents living in non-metropolitan areas. Those who had completed

palliative care specific education performed analysing, counselling and responding

behaviours more frequently than those who had not completed any palliative care

specific education. Respondents who reported it was within their scope of practice to

refer to SPCS also reported more frequently performing analysing, counselling and

responding behaviours compared to those who could not directly refer to SPCS.

Those who had previously worked for SPCS reported performing responding

behaviours more frequently than those who had no experience working for the

service.


Table 6.7.

The relationships between selected demographic factors and frequency of nursing advocacy behaviours (analysing, counselling and responding) (n = 110)

Demographic factors Analysing behaviours Counselling behaviours Responding behaviours M (SD) t df M (SD) t df M (SD) t dfEmployment status

Full-time 11.70(3.07) 0.28 108 15.06(3.31) 0.60 108 5.20(1.71) 1.74 108Part-time 11.55(2.39) 14.68(3.18) 4.59(1.90)

Workplace location Metropolitan area 11.25(3.00) -2.49* 108 14.48(3.41) -2.35* 108 4.57(1.88) -5.30* 93.34 Non-metropolitan area 12.72(1.93) 16.10(2.44) 6.03(0.98)

Postgraduate nursing education Completed 11.51(2.94) 0.948 108 14.83(3.34) 0.51 108 4.99(1.85) -0.382 108Not completed 12.13(2.20) 15.22(2.92) 4.83(1.64)

Palliative care specific education Completed 11.90(2.63) 2.88* 108 15.39(2.95) 4.85* 108 5.17(1.72) 3.86* 108Not completed 9.50(3.42) 11.00(3.05) 3.17(1.47)

Nurse practitioner endorsement Completed 13.00(1.00) -1.11 108 16.00(1.58) -0.767 108 6.20(1.48) -1.59 108Not Completed 11.57(2.85) 14.86(3.30) 4.90(1.80)

Within scope of practice to refer to SPCS Yes 12.19(2.33) 3.13* 108 15.69(2.72) 3.54* 51.95 5.64(1.44) 7.00* 108No 10.46(3.37) 13.23(3.68) 3.49(1.63)

Type of SPCS available Dedicated SPCS 11.73(2.78) 0.84 108 14.91(3.34) -0.031 108 4.93(1.81) -0.41 108External SPCS 11.07(3.01) 14.93(2.69) 5.13(1.85)

Previously worked for SPCS Yes 12.25(2.52) 1.61 108 15.61(3.16) 1.59 108 5.56(1.48) 2.50* 108No 11.34(2.91) 14.57(3.26) 4.66(1.88)

M (SD) F df M (SD) F df M (SD) F dfPrimary focus of current nursing role

Clinical 12.02(2.26) 2.43 109 15.36(2.81) 2.36 109 5.10(1.70) 1.85 109 Education 11.15(3.36) 13.92(3.33) 4.85(2.12)Research 9.83(3.87) 12.50(5.32) 3.33(1.36)Management 10.20(4.52) 14.00(4.40) 4.90(2.18)

Note. *p < 0.05; M = mean; SD = standard deviation; F = f-statistic; t = t-test; df = degrees of freedom; SPCS = Specialist Palliative Care Services.


6.8 THE RELATIONSHIPS BETWEEN SELECTED DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS AND THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS

Level 3 – Multivariate: Question 6. Can the frequency of nursing advocacy

behaviours be explained by the demographic factors and potential behavioural

determinants that influence these behaviours?

All potential behavioural determinants and demographic factors that had a

significant bivariate relationship (p value of <0.05) with at least two dependent

variables (analysing, counselling and responding behaviours) were included in all

three regression models. Scope to directly refer to SPCS, completion of palliative

care specific education, years of experience as cancer nurse, metropolitan workplace

location, total opportunities score, total motivations score and total capabilities

score were entered into each backward stepwise regression model (refer to Table 6.8,

Table 6.9 and Table 6.10). The frequency of nursing advocacy behaviours was

predicted by these included variables. Each dependent variable was measured using

the summated scales for analysing, counselling and responding behaviours described

in Table 4.1. Preliminary analyses were conducted to check for violations of the

assumptions of multiple linear regression. Relationships between independent

variables total motivations score, total capabilities score and total opportunities

score were all highly correlated, however variance inflation factor (VIF) values

indicated multicollinearity did not affect the regression models (refer to Appendix

T). Scatterplots and case wise diagnostics identified two outliers for the analysing

behaviours model and one outlier for the counselling behaviours model (refer to

Appendix U and Appendix V). Bootstrapping and sensitivity analyses were

performed to compare standard multiple linear regression models with outliers

against models without outliers for both dependent variables. There were negligible

differences between bootstrapped parameter estimates and original estimates.

Sensitivity analyses found outliers did not have a significant influence on the

explanatory power of either model, thus all outliers were retained for multivariate

analyses.

Each sequential model produced during backward stepwise regression for each

dependent variable is presented in Appendix X, Appendix Y, and Appendix Z. The

initial and final backward stepwise regression models for analysing, counselling and


responding behaviours are presented in Table 6.8, Table 6.9 and Table 6.10

respectively. The most parsimonious model for each dependent variable was selected

as the final model.

The backward stepwise regression model statistically significantly predicted

the frequency of analysing behaviours, F(2, 107) = 20.39, p < 0.05, adj. R2 = 0.262

(refer to Table 6.8). The R2 for the overall model was 27.6%, a small effect

according to Cohen (1988). Both variables (total motivations score, scope to directly

refer to SPCS) made a statistically significant contribution to the final model. Thus,

total motivations score and scope to directly refer to SPCS explained 27.6% of the

variance in the frequency of analysing behaviours as reported by cancer nurses. A

positive relationship existed between total motivations score, scope to directly refer

to SPCS and the frequency of analysing behaviours. For example, as total

motivations score increases by one unit, the frequency of analysing behaviours

increases by 0.08 when all other variables are held constant.

The backward stepwise regression model was statistically significant for the

frequency of counselling behaviours, F(3, 106) = 20.81, p < 0.05, adj. R2 =0.353

(refer to Table 6.9). The R2 for the overall model was 37.1%, a moderate effect

according to Cohen (1988). Completion of palliative care specific education, total

motivations score and scope to directly refer to SPCS were all statistically significant

independent predictors in the final model. Together these three variables explained

37.1% of the variance in the frequency of counselling behaviours as reported by

cancer nurses. A positive relationship existed between completion of palliative care

specific education, total motivations score, scope to directly refer to SPCS and the

frequency of counselling behaviours. For instance, as completion of palliative care

specific education increases by one unit, the frequency of counselling behaviours

increases by 2.36 when all other variables are held constant.

Backward stepwise regression resulted in a statistically significant model to

predict variance in the frequency of responding behaviours, F(3, 106) = 35.80, p <

0.05, adj. R2 = 0.489 (refer to Table 6.10). The R2 for the overall model was 50.3%, a

large effect according to the guidelines of Cohen (1988). All independent variables

(metropolitan workplace location, total motivations score and scope to directly refer

to SPCS) made a statistically significant contribution to the final model. Overall, the

final model demonstrated 50.3% of the variance in responding behaviours of cancer


nurses can be explained by their metropolitan workplace location, total motivations

score and scope to directly refer to SPCS. A positive relationship existed between

total motivations score, scope to directly refer to SPCS and frequency of responding

behaviours. For example, as scope to directly refer to SPCS increases by one unit, the

frequency of responding behaviours increases by 1.60 when all other variables are

held constant. A negative relationship was noted between metropolitan workplace

location and frequency of responding behaviours. For instance, as metropolitan

workplace location increases by one unit, the frequency of responding behaviours

decreases by 0.62 when all other variables are held constant. Regression coefficients

and standard errors for the final models of each dependent variable can be found in

Table 6.8, Table 6.9 and Table 6.10.


Table 6.8.

The initial and final models for predictors of frequency for analysing behaviours (n = 110)

Analysing behaviours models Variable β B 95% CI SEB P-value

Model 1

Constant -0.72 [-5.82, 4.38] 2.57 0.78 Completion of palliative care specific education 0.06 0.54 [-1.09, 2.17] 0.82 0.52 Metropolitan workplace location -0.94 -0.60 [-1.75, 0.55] 0.58 0.31 Years of experience as cancer nurse 0.10 0.03 [-0.03, 0.09] 0.03 0.26 Total motivations score 0.38 0.06 [0.12, 0.11] 0.03 0.02* Total opportunities score -0.30 -0.00 [-0.04, 0.03] 0.02 0.80 Total capabilities score 0.06 0.01 [-0.03, 0.05] 0.02 0.72 Scope to directly refer to SPCS 0.12 0.75 [-0.34, 1.83] 0.55 0.17 R2 0.302 Adjusted R2 0.254 F 6.30**

Model 6

Constant -2.05 [-6.76, 2.66] 2.38 0.39 Total motivations score 0.45 0.08 [0.05, 0.10] 0.01 0.000** Scope to directly refer to SPCS 0.18 1.09 [0.08, 2.10] 0.51 0.03* R2 0.276 Adjusted R2 0.262 F 20.39**

Note. *p < 0.05; ** p < 0.001; B = unstandardized regression coefficient; F = f-statistic; SEB = standard error of the coefficient; β = standardised coefficient (beta); CI = confidence interval; SPCS = Specialist Palliative Care Services.


Table 6.9.

The initial and final models for predictors of frequency for counselling behaviours (n = 110)

Counselling behaviours model Variable β B 95% CI SEB P-value

Model 1

Constant 0.44 [-5.12, 6.00] 2.80 0.88 Completion of palliative care specific education 0.24 2.47 [0.70, 4.25] 0.90 0.007** Metropolitan workplace location -0.05 -0.39 [-1.65, 0.86] 0.63 0.54 Years of experience as cancer nurse -0.01 -0.01 [-0.07, 0.06] 0.03 0.88 Total motivations score 0.27 0.05 [-0.00, 0.11] 0.03 0.07 Total opportunities score -0.02 -0.00 [-0.04, 0.03] 0.02 0.89 Total capabilities score 0.15 0.02 [-0.02, 0.07] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.33 [0.15, 2.50] 0.59 0.03* R2 0.381Adjusted R2 0.339F 8.98**

Model 5

Constant -0.73 [-5.88, 4.41] 2.60 0.78 Completion of palliative care specific education 0.23 2.36 [0.62, 4.11] 0.88 0.008** Total motivations score 0.38 0.72 [0.04, 0.11] 0.02 0.000** Scope to directly refer to SPCS 0.22 1.54 [0.44, 2.64] 0.55 0.007** R2 0.371Adjusted R2 0.353F 20.81**

Note. *p < 0.05; **p < 0.001; B = unstandardized regression coefficient; F = f-statistic; SEB = standard error of the coefficient; β = standardised coefficient (beta); CI = confidence interval; SPCS = Specialist Palliative Care Services.


Table 6.10.

The initial and final models for predictors of frequency for responding behaviours (n = 110)

Responding behaviours model Variable β B 95% CI SEB P-value

Model 1

Constant -2.68 [-5.34, 0.01] 1.36 0.05 Completion of palliative care specific education 0.11 0.65 [-0.21, 1.52] 0.44 0.14 Metropolitan workplace location -.13 -0.51 [-1.12, 0.10] 0.31 0.10 Years of experience as cancer nurse 0.06 0.01 [-0.02, 0.04] 0.02 0.45 Total motivations score 0.23 0.02 [-0.00, 0.05] 0.01 0.08 Total opportunities score 0.05 0.00 [-0.01, 0.02] 0.01 0.65 Total capabilities score 0.13 0.01 [0.01, 0.03] 0.01 0.32 Scope to directly refer to SPCS 0.38 1.48 [0.90, 2.05] 0.29 0.000** R2 0.53Adjusted R2 0.49F 16.17**

Model 5

Constant -3.18 [-5.84, -0.52] 1.34 0.02* Metropolitan workplace location -0.15 -0.62 [-1.21, -0.03] 0.30 0.04* Total motivations score 0.41 0.04 [0.03, 0.06] 0.01 0.000** Scope to directly refer to SPCS 0.42 1.60 [1.04, 2.16] 0.28 0.000** R2 0.503Adjusted R2 0.489F 35.80**

Note. *p < 0.05; **p < 0.001; B = unstandardized regression coefficient; F = f-statistic; SEB = standard error of the coefficient; β = standardised coefficient (beta); CI = confidence interval; SPCS = Specialist Palliative Care Services.

Chapter 7: Discussion & Conclusion 105

Chapter 7: Discussion & Conclusion

7.1 INTRODUCTION

The purpose of this study was to examine the actions cancer nurses take to

advocate for the referral of patients with cancer to SPCS, as well as the individual

and organisational factors that influence these actions. Section 7.2 discusses the

frequency of nursing advocacy behaviours for patient referrals to SPCS over a period

of 12 months. Section 7.3 outlines the potential behavioural determinants (as defined

by the domains of the DIBQ) influencing nurses advocating for patient referrals to

SPCS, as perceived by Australian cancer nurses. Section 7.4 discusses the most

common time points for cancer nurses to advocate for patient referrals to SPCS.

Section 7.5 reviews the findings of the relationships between the demographic

factors and potential behavioural determinants that influence nursing advocacy

behaviours and the frequency of these behaviours. Section 7.6 explains the key

behavioural determinants and demographic factors that influence the frequency of

nursing advocacy behaviours. The implications of this study are presented in Section

7.7. The limitations of this study are detailed in Section 7.8. The findings of this

cross-sectional study informed the development of a number of recommendations for

practice, education and further research, which are discussed in Section 7.9. Section

7.10 provides the conclusions of the study.

7.2 WHAT IS THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD?

Respondents engaged in a wide range of nursing advocacy behaviours in this

study (refer to Table 6.3). Analysing and counselling behaviours were the most

frequently reported nursing advocacy behaviours. The specific behaviours which

were most frequently employed included empower patients to make informed

decisions about their treatment options, identify the need for patient referrals to

SPCS and provide patients with information about their right to make informed

decisions about their healthcare. The nursing advocacy behaviours least frequently

106 Chapter 7: Discussion & Conclusion

undertaken were responding behaviours. Specifically, these behaviours were provide

patients with information about SPCS, ask patients to identify their goals of care and

independently refer patients to SPCS.

This is the first study to describe nursing advocacy behaviours that facilitate

patient referrals to SPCS. Few studies have reported nursing advocacy activities in

oncology and/or haematology settings (Gosselin-Acomb et al., 2007; Pavlish &

Ceronsky, 2007, 2009; Vaartio, 2008; Vaartio et al., 2009b; Vaartio-Rajalin &

Leino-Kilpi, 2011). It is also difficult to compare findings of this study with previous

studies, as previous studies have measured different nursing advocacy behaviours or

used different categorisations of behaviours to the current study.

There are a number of explanations for the high frequency of nursing advocacy

behaviours reported by cancer nurses in this study. This sample was generally highly

experienced in cancer nursing and most respondents were well-educated in nursing

and palliative care. These participant characteristics reflect the fact that the source for

this sample was professional organisations. As such, the sample reflects a group who

are likely to be more proactive about their professional development than nurses who

are not members of professional organisations. Clinical experience (Ellis & Hartley,

2009; Mallik, 1998) and adequate education (Ellis & Hartley, 2009) have previously

been identified as important antecedents for patient advocacy, although one study

reported that years of clinical experience and lack of formal advocacy training did

not influence the nurse’s ability to function as an advocate (Vaartio et al., 2006).

This sample of cancer nurses regularly acted as patient advocates by engaging

in a wide range of activities, which is consistent with similar studies (Choi, 2015;

Vaartio et al., 2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011).

This present study sheds new light on advocacy behaviours by distinguishing

between indirect behaviours (analysing and counselling) and more direct behaviours

that involve intervening often with the multidisciplinary team. That is, mean scores

indicate cancer nurses most commonly engaged in two types of nursing advocacy

behaviours: analysing and counselling. These types of behaviours indicate cancer

nurses predominantly focused on providing needs-based care by assessing and

identifying the needs of patients (analysing), connecting them to specific healthcare

information and representing their needs to members of the healthcare team

(counselling) (Vaartio, 2008). However, when nurses engage in responding


behaviours they are taking more direct steps to advocate for the patient’s identified

care needs. These actions can have positive or negative consequences.

Responding behaviours have previously been described as a form of risk

tasking, where the consequences of acting as a patient advocate can result in job

satisfaction, professional recognition, conflict or confrontation (Hanks, 2008;

O’Connor & Kelly, 2005). Nurses who fear negative consequences of patient

advocacy could avoid the practice altogether, even if they have identified individuals

need their assistance (Choi, 2015; Ellis & Hartley, 2009; McGrath & Holewa, 2006).

Lack of organisational support has also been identified in previous studies as a

barrier to nursing advocacy (Ellis & Hartley, 2009; Vaartio, 2008). This proposition

is reflected in this study, with over one third of respondents stating they did not have

the scope of practice to directly refer to the service. These studies provide some

explanation as to why cancer nurses reported engaging more frequently in analysing

and counselling behaviours, in an attempt to indirectly influence referral, while they

engaged less often in actions which involved direct advocacy.

7.3 WHAT ARE THE POTENTIAL BEHAVIOURAL DETERMINANTS (AS DEFINED BY THE DOMAINS OF THE DIBQ) INFLUENCING NURSES ADVOCATING FOR PATIENT REFERRALS TO SPCS?

Few studies have described the potential behavioural determinants of cancer

nursing advocacy behaviours in the acute care setting (Gosselin-Acomb et al., 2007;

Pavlish & Ceronsky, 2007, 2009; Vaartio, 2008; Vaartio-Rajalin & Leino-Kilpi,

2011). To the best of our knowledge, no studies have examined the nursing actions

taken towards facilitating referrals to SPCS for patients with cancer in the in-patient

setting.

Findings from this study indicate cancer nurses’ belief systems and the nature

of nursing advocacy behaviours had the greatest positive influence on their

behaviours. Specifically, cancer nurses generally had favourable beliefs about the

outcomes of their nursing advocacy behaviours and their ability to act as patient

advocates. In addition, respondents perceived advocacy as a routine behaviour

triggered by the needs of patients, their families, disease and/or treatment-related

characteristics.


However, domains from the DOCNAB subscale concerning the patient,

negative emotions, socio-political context, goals and innovation strategy were

perceived to have a neutral or negative influence on cancer nursing advocacy

behaviours. In other words, cancer nurses were uncertain about whether patient

access to SPCS could be improved and seldom felt distress, concern, frustration,

emotional fatigue or burnout affected their advocacy behaviours. There was also less

agreement about whether nursing staff levels, clinical guidelines and the in-patient

setting promoted or inhibited nursing advocacy behaviours. Indeed, the emphasis on

cure or prolonging life has been identified in previous qualitative studies with

oncology nurses as a barrier to integrating palliative care (Pavlish & Ceronsky, 2007,

2009). Deliberate goal-oriented care is needed to successfully integrate palliative

care into the busy high turnover acute care setting (Pavlish & Ceronsky, 2007, 2009).

In the present study, cancer nurses sometimes found other nursing tasks were a

greater priority than advocating for referrals to SPCS. These results confirm earlier

findings according to which challenges in coordinating care (Pavlish & Ceronsky,

2007, 2009) and limited time were barriers towards nurses acting as patient

advocates (Gosselin-Acomb et al., 2007; Pavlish & Ceronsky, 2007, 2009; Vaartio,

2008; Vaartio-Rajalin & Leino-Kilpi, 2011). Previous studies have attributed nursing

advocacy as the provision of exceptional care, which is difficult to role model and

apply within the time constraints of the acute care setting (Gosselin-Acomb et al.,

2007; Vaartio et al., 2006). Cancer nurses also reported less agreement as to whether

their workplace provided information about SPCS, training, routine needs-based

assessments and decision-making tools to support the referral decision-making

process. Previous studies with oncology nurses underline the need for professional

development opportunities to promote nurses to develop advocacy skills and mentor

others within the workplace (Gosselin-Acomb et al., 2007; Pavlish & Ceronsky,

2009).

7.4 WHAT ARE THE MOST COMMON TIME POINTS FOR CANCER NURSES TO ADVOCATE FOR PATIENT REFERRALS TO SPCS?

In this study, the most common time points for cancer nurses to always or often

advocate for referrals to SPCS were when end of life was imminent or no further

curative treatment could be offered for advanced cancer. Overall, most cancer nurses


often advocated for referrals towards the latter stages of the disease trajectory.

Previous studies inconsistently described cancer nursing actions towards integrating

palliative care at specific time points in the disease trajectory, making it difficult to

compare these findings with the current study (Pavlish & Ceronsky, 2007, 2009;

Vaartio-Rajalin & Leino-Kilpi, 2011).

In one previous qualitative study, few oncology nurses expressed the desire to

involve SPCS in patient care, as they believed palliative care provision was their

responsibility (Pavlish & Ceronsky, 2007). This was despite also acknowledging

barriers towards providing palliative care, such as having limited time to address

palliative care concerns and being confused about when they should introduce SPCS

(Pavlish & Ceronsky, 2007). Other studies have described oncology nursing

advocacy actions occurred at the beginning of the disease trajectory (Vaartio-Rajalin

& Leino-Kilpi, 2011) or towards the end of life (Pavlish & Ceronsky, 2009) without

any examination of the factors influencing such practices. Such haphazard practices

suggest nursing advocacy is a complex behaviour which is influenced by a range of

factors. This variation in practice means that outcomes for those living with cancer

and their families will also vary (Greer et al., 2012; Temel et al., 2011).

The most common time points for cancer nursing advocacy actions in this

study reflect the referral patterns of oncology physicians from previous studies (Dalal

et al., 2011; Reville et al., 2013; Waller et al., 2008; Weissman & Meier, 2011). In

this study, the results indicate more cancer nurses always or often advocated for

patient referrals to SPCS from the point where no further curative treatment can be

offered for advanced cancer. Possible explanations for such advocacy behaviours

include that more nurses opt to advocate for SPCS involvement during the latter

stages of the illness trajectory, when there is more certainty that the decision is

contextually congruent with the overall goal of treatment. Moreover, patients with

advanced cancer can experience an increased incidence and severity of symptoms as

their disease progresses (Chiu, Hu, & Chen, 2000; Vainio, Auvinen, & Group, 1996),

potentially providing cancer nurses with specific clinical cues to indicate the need for

SPCS involvement.

It is also possible that cancer nurses advocate for referrals to SPCS towards the

end of life, as there is less potential for professional conflict if the medical team have

already acknowledged that there are no further curative treatments. Future


observational studies are needed to examine nursing advocacy behaviours across all

stages of the illness trajectory to comprehensively identify the triggers and rationale

for introducing SPCS and the factors influencing such decisions.

7.5 WHAT ARE THE RELATIONSHIPS BETWEEN THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE NURSING ADVOCACY BEHAVIOURS AND THE FREQUENCY OF THESE BEHAVIOURS?

The conceptual framework for this study proposes that behaviour can be

explained by factors related to an individual’s physical and psychological

capabilities, social and physical opportunities within the environment, and reflective

and automatic motivations (Michie et al., 2014; Michie et al., 2011). In this study,

capability refers to a person’s knowledge, skills, behavioural regulation, memory,

attention and decision-making processes (Michie et al., 2011). Opportunity

encompasses the impact of social influences and environmental context and

resources on an individual’s behaviour (Michie et al., 2011). Motivation includes an

individual’s social/professional role and identity, beliefs about their capabilities,

optimism, beliefs about consequences, reinforcement, intentions, goals, and emotions

(Michie et al., 2011). All relevant domains were grouped using these definitions to

establish the capabilities, opportunities and motivations of cancer nurses and

measure their influence on nursing advocacy behaviours. The frequency of nursing

advocacy behaviours and the factors associated with these behaviours provided an

important opportunity to explore cancer nursing advocacy in the in-patient setting.

This section discusses the factors associated with analysing, counselling and

responding behaviours.

Analysing behaviours

Based on the bivariate analyses, clinical experience as a cancer nurse was

positively correlated with analysing behaviours, supporting previous authors who

argue that it is an antecedent for nursing advocacy (Ellis & Hartley, 2009; Mallik,

1998). Total capabilities, opportunities and motivations scores were also reported to

be independent positive predictors of analysing behaviours, reinforcing the complex

nature of advocacy behaviours. These results support the underpinning theories of


the COM-B model: if an individual has the capability, opportunity and motivation to

undertake a specific behaviour, then the behaviour is more likely to occur (Michie et

al., 2011).

Analysing behaviours rely on the nurse’s clinical expertise to assess and

identify whether a patient needs to be referred to SPCS. Thus, it is not surprising that

there was a significant mean difference in the frequency of analysing behaviours

between those who had completed palliative care specific education and those who

had not. On average, respondents who worked in metropolitan areas engaged in

fewer analysing behaviours than those living in non-metropolitan areas. These

differences between rural and metropolitan settings might reflect differing models of

care and resources. That is, on average, Australians living in rural and remote areas

do not have the same access to healthcare services as those living in metropolitan

areas (Rural Health Standing Committee, 2011). Hospitals based in metropolitan

areas have more access to multidisciplinary care. The lack of access to

multidisciplinary teams and resources could mean that nurses in nonmetropolitan

settings needed to engage in more analysing behaviours to fill gaps in available

services.

Scope of practice to refer to SPCS was also identified to have a significant

influence on analysing behaviours. Respondents who did have the scope of practice

to refer performed more analysing behaviours than those who did not. Such findings

support the conceptualisation of nursing advocacy as a series of inter-related actions

(Vaartio et al., 2006), suggesting those who can make direct referrals are more

motivated or empowered to perform related advocacy behaviours than those who do

not have the scope of practice to refer.

Counselling behaviours

According to the results of bivariate analyses, total capabilities, opportunities

and motivations scores were all significant factors associated with the frequency of

counselling behaviours. Such results support the conceptual framework for this study

– as the capabilities, opportunities and motivations of cancer nurses increase so does

the frequency of the related behaviour (Michie et al., 2011). Of note, years of

experience as a cancer nurse did not have a statistically significant association with


counselling behaviours. These results might indicate that most participants routinely

engage in counselling behaviours as part of their nursing role, such as providing

patients with information about their right to make informed decisions about their

healthcare and discuss with nursing colleagues the need to refer patients to SPCS.

However, respondents who had completed palliative care specific education

engaged in more counselling behaviours than those who had not completed any

palliative care specific education. Such results indicate that relevant education

develops greater clinical competence and confidence to act as a patient advocate

(Ellis & Hartley, 2009). Moreover, nurses who worked in metropolitan areas

performed less advocacy behaviours than those who worked in non-metropolitan

areas. As noted previously, many metropolitan hospitals in Australia provide

multidisciplinary models of care, including physiotherapists, social workers,

occupational therapists, welfare officers, dieticians and speech therapists all of which

routinely provide counselling behaviours in the acute care setting. Patients could

have more ready access to these services, thus reducing the amount of counselling

behaviours required by nurses working in metropolitan areas. Importantly, cancer

nurses who had the scope of practice to refer to SPCS engaged in more counselling

behaviours than those who did not have the scope of practice to refer.

Responding behaviours

Bivariate analyses found total capabilities, opportunities and motivations

scores were all positively correlated with the frequency of responding behaviours.

Similar to the other dependent models, these results support the conceptual

framework for this study. Thus, if no barriers exist towards responding behaviours,

individuals who feel capable and motivated about engaging in these activities will be

more likely to repeat the practice if the environment supports such opportunities.

Years of experience as a cancer nurse was another factor that was a positive

independent predictor of responding behaviours, supporting the view that those with

clinical expertise and professional competence are more likely to engage in advocacy

behaviours (Ellis & Hartley, 2009; Pavlish & Ceronsky, 2009).

As with other advocacy behaviours, on average, cancer nurses working in non-

metropolitan areas engaged in more responding behaviours than those working in


metropolitan areas. Moreover, bivariate analyses also found that cancer nurses who

had completed palliative care specific education and those who had previously

worked in SPCS engaged in more responding behaviours than those that had not, as

was the case with other advocacy behaviours. These results confirm that clinical

expertise is a prerequisite of nursing advocacy (Ellis & Hartley, 2009; Pavlish &

Ceronsky, 2009). It was also confirmed that cancer nurses who had the scope of

practice to refer to SPCS performed more responding behaviours than those without

the scope of practice to refer to the service, highlighting the importance of

organisational support in nursing advocacy practices (Ellis & Hartley, 2009; Vaartio,

2008).

Total capabilities, opportunities, and motivations scores, workplace location,

completion of palliative care specific education and scope of practice to refer to

SPCS were significantly associated with all types of nursing advocacy behaviours.

These findings underline the complexities of the behaviour under examination. It is

interesting to note that years of experience as a cancer nurse was a significant

predictor of analysing and responding behaviours only. Another factor that did not

have a significant relationship with any type of advocacy behaviour was years of

experience as a SPCS nurse. This result was surprising, however, given the small

sample size (n = 36) with SPCS experience in this study, further studies are needed.

7.6 CAN THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS BE EXPLAINED BY THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE THESE BEHAVIOURS?

This is the first cross-sectional study examining the specific actions of cancer nurses

in the referral decision-making process to SPCS and the factors that influence these

actions. Cancer nurses who had the scope to directly refer to SPCS and positive

motivations towards the service frequently engaged in all types of nursing advocacy

behaviours. The relationship between having the scope to directly refer to SPCS,

positive motivations towards the service and nursing advocacy behaviours can be

explained using the hypothesised relationships of the COM-B model (Michie et al.,

2011). That is, cancer nurses who had positive motivations and the scope to directly

refer to SPCS could perceive the act of advocating for referrals as more achievable


and thus choose to engage in these behaviours more often. Alternatively, optimism

could promote cancer nurses to consider advocacy as a worthwhile experience,

generating positive emotions in relation to this behaviour and reinforcing the benefits

of repeating such behaviours.

The completion of palliative care specific education variable also had a

significant positive relationship with the frequency of counselling behaviours. This is

not surprising, as palliative care education has positively influenced nursing

advocacy behaviours in other contexts (Thacker, 2008) and is considered to be

antecedent to effective nursing advocacy (Ellis & Hartley, 2009; Pavlish &

Ceronsky, 2009). It is noteworthy that palliative care education was not a positive

predictor for all types of nursing advocacy behaviours, possibly due to the small

number of respondents who did not complete any palliative care specific education

(n = 12/110, 10.9%).

The responding behaviours model identified a significant difference in the

frequency of responding behaviours between cancer nurses who worked in

metropolitan and non-metropolitan areas. Nurses working in metropolitan areas

engaged less frequently in responding behaviours when compared to their non-

metropolitan counterparts. One possible explanation for cancer nurses to perform less

responding behaviours in metropolitan areas when compared to non-metropolitan

areas is differing resources in these settings. Australian city-based hospitals have

greater access to a wide range of multidisciplinary services compared to non-

metropolitan hospitals, thus reducing the need for independent referrals made by

metropolitan cancer nurses to SPCS.

7.7 IMPLICATIONS

The purpose of this study was to describe the nursing behaviours involved in

advocating for patient referrals to SPCS in the in-patient setting. In addition, this

study explored the demographic factors and behavioural determinants that influence

these nursing advocacy behaviours. The theoretical and practical implications of the

results are explored in the following sections.


7.7.1 Theoretical implications

Nursing advocacy differs from advocacy roles in other settings. Advocates

within the legal system may argue a case by representing the entire needs, concerns

and interests of one individual. Nursing advocacy is often described as a series of

actions that are integral to the profession (Choi, 2015; Vaartio, 2008; Vaartio et al.,

2006). This study supports such theories, based on the range and high frequency of

nursing advocacy behaviours reported. Vaartio et al. (2006) identified nursing

advocacy as a contextually bound process, driven by the analysis of the patient’s

current needs and situation. This work led to nursing advocacy being described as a

series of dependent activities (analysing, counselling, responding, shielding and

whistleblowing) reliant on nurses empowering patients to communicate their needs

throughout the iterative process (Vaartio et al., 2006). Similar studies highlight that

good knowledge of the patient is an important precursor to providing effective

advocacy (Ellis & Hartley, 2009; Pavlish & Ceronsky, 2009). Further research is

needed to explore whether either classification of nursing advocacy behaviours is a

true reflection of the process across other healthcare settings.

The existence of nursing advocacy roles is arguably based on the assumption

that the union of two marginalised groups (nurses and patients) within the healthcare

system results in patient empowerment. Critics have questioned how nurses can

empower patients when their profession lacks authority and autonomy within the

healthcare system (Mallik, 1998). Nursing advocacy also assumes that all patients are

vulnerable and unable to voice their own concerns and wishes about their healthcare,

which may not reflect reality. Other authors insist nurses are best placed to act as

patient advocates within the healthcare system, despite a lack of evidence to support

their case and ambiguity about their role (Choi, 2015; Vaartio & Leino-Kilpi, 2004).

This study provides preliminary insights into the cancer nursing advocacy role in the

referral decision-making process to SPCS.

This study makes an important contribution to existing nursing advocacy

theories, confirming cancer nurses regularly engage in analysing, counselling and

responding behaviours when advocating for referrals to SPCS. Importantly, these

results support the findings of previous studies, which identified high job motivation

(Vaartio et al., 2009b) and positive beliefs (Thacker, 2008) were associated with

nurses undertaking advocacy practices in the workplace.


This study elicited information about how often cancer nurses engage in a

series of nursing advocacy behaviours, to try and measure the phenomenon as it

occurs in practice—a series of actions that can lead to referrals to SPCS. Examining

the barriers and facilitators influencing distinct stages of the referral decision-making

process will be an important focus of future qualitative research. It is critical that

future exploratory studies focus on describing the perceptions of each key

stakeholder and the factors that promote/inhibit patient access to SPCS from their

point of view.

Behaviours do not exist in isolation (Michie et al., 2014). The referral decision-

making process is influenced by a series of behaviours from each key stakeholder –

the patient, their caregiver, their cancer nurse, their physician, and potentially other

healthcare professionals. Together these behaviours and factors influence the

decision-making process regarding whether patients with advanced cancer receive

support from SPCS. The extent to which each factor is perceived to influence the

behaviours of cancer nurses advocating for referrals to SPCS, can be used to inform a

targeted intervention to enhance their role in the future.

According to the COM-B model, behaviours are a product of the individual’s

capabilities, opportunities and motivations to undertake a specific action (Michie et

al., 2011). The findings of this study fit well with this theory, identifying the

motivations of cancer nurses as the most important behavioural determinant in the

context of advocating for referrals to SPCS. Using the BCW, these findings

substantiate the development of behaviour change interventions that aim to enhance

the motivations of cancer nurses with the intent of increasing the frequency of

advocacy activities in practice (Michie et al., 2014; Michie et al., 2011).

Future behaviour change interventions that aim to promote the cancer nurses’

role in advocating for palliative care referrals could be designed using the BCW

(Michie et al., 2014). The first step is designing a behaviour change intervention is

problem analysis, which involves assessing all relevant behaviours before selecting a

target behaviour (Michie et al., 2014). The target behaviour should be selected based

on the following considerations: likely impact of behaviour change, ease of changing

the behaviour and position of the behaviour within the system of relevant behaviours

(Michie et al., 2014). Using the BCW, the more central the target behaviour is in

relation to other related behaviours, the more likely the intervention will influence


other interdependent behaviours (Michie et al., 2014). Ultimately, the aim is to

design a behaviour change intervention that transforms the behavioural system and

reduces the risk of undesirable behaviours returning over time (Michie et al., 2014).

7.7.2 Practical implications

Based on the American Society of Clinical Oncology guidelines (Ferrell et al.,

2016), SPCS should be introduced early in disease trajectory for patients with

metastatic cancer and a high symptom burden to alleviate their suffering and improve

their quality of life. Nevertheless, several studies report referrals often occur late in

the disease trajectory or not at all (Dalal et al., 2011; Reville et al., 2013; Waller et

al., 2008; Weissman & Meier, 2011). Given the current knowledge translation

problem, it is important to consider alternative ways of coordinating and prioritising

the referral decision-making process to SPCS. Some facilities employ nurse-led

referral processes to promote patient access to SPCS (Bakitas et al., 2013). The

results of this study suggest that barriers to appropriately skilled nurses’ engaging in

palliative care referral processes need to be addressed by introducing education

processes and supportive policies. Where policies do not enable nurses to directly

refer, actions to enhance nurses’ input into the multidisciplinary referral decision-

making process are required (Pavlish & Ceronsky, 2009).

However, integrating SPCS with standard oncology/haematology care within

the multidisciplinary setting is not without its challenges. Firstly, it is necessary to

determine whether a patient’s palliative care needs can be met by the current

healthcare team. It is essential an evidence-based and structured approach is

employed when assessing the palliative care needs of patients with advanced cancer,

such as the Palliative Care Needs Assessment Tool (PC-NAT) (A Waller, Girgis,

Currow, & Lecathelinais, 2008). Once a palliative care needs assessment has been

completed, it is important to establish which needs can be met by the current

healthcare team and which needs are complex and may be better managed by SPCS.

Secondly, good multidisciplinary care prioritises the patient’s wishes and

carer’s concerns and clearly communicates the goals of care to all members of the

healthcare team in a timely manner. This is difficult to achieve in a busy, high-

turnover, acute cancer setting where competing demands and responsibilities delay


patient care, create power imbalances, and impede communication within the

multidisciplinary team. Further research is needed to develop and test

communication tools that could promote better multidisciplinary collaboration during

the referral decision-making process to SPCS.

This study confirms cancer nurses make an important contribution to the

palliative care referral decision-making process by engaging in a range of advocacy

activities. Cancer nurses often rely on their knowledge of patients to assess and

identify whether they need support from SPCS (analysing), provide relevant

information to empower patients to make informed healthcare decisions, represent

patient needs to the healthcare team (counselling), and advocate or refer to SPCS

(responding) where needed. In this study, cancer nurses most frequently identified

always advocating for referrals towards the later stages of the disease trajectory.

Based on these results, interventions to promote the introduction of needs-based

referral earlier in the disease trajectory for patients with advanced cancer are

required. As noted above, such interventions should consider strategies to reduce

unnecessary barriers to scope of practice and enhance the motivations of nurses

towards SPCS to increase the frequency of referrals to the service.

If early referral rates were to increase, SPCS need to be adequately resourced

and prepared to provide additional services. It is also important to consider that the

palliative care referral is a contextually bound process involving several key

stakeholders, warranting consideration of the problem at an individual and

organisational level. Healthcare providers need to provide the right resources,

guidelines and training opportunities to promote and support cancer nurses to

effectively engage in nursing advocacy behaviours in response to identified patient

needs (Ellis & Hartley, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011).

Previous studies have shown self-confidence in initiating palliative care or

prognostic discussions was linked with physicians referring earlier and more often

(Bakitas et al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006; Wentlandt et

al., 2012). Similarly, cancer nurses who had positive beliefs about their capabilities

engaged more frequently in analysing, counselling and responding behaviours.

Nevertheless, nurses who had limited time to address palliative care concerns

(Gosselin-Acomb et al., 2007; Pavlish & Ceronsky, 2007, 2009; Vaartio, 2008;

Vaartio-Rajalin & Leino-Kilpi, 2011) or feared the social consequences of patient


advocacy could avoid the practice altogether (Choi, 2015; Ellis & Hartley, 2009;

McGrath & Holewa, 2006).

These barriers towards nurses engaging in advocacy practices within the acute

care setting need to be addressed. Such results suggest that in-depth interviews with

nurses may enhance our understanding of how these factors influence nursing

advocacy behaviours. Based on the findings of this study, nurses were unsure if their

workplace provided training and decision-making tools to support healthcare

professionals to advocate for palliative care referrals where needed. Specifically,

advocacy education and training is needed to promote cancer nurses to more

frequently engage in responding behaviours. Furthermore, healthcare providers need

to drive policy change to expand the scope of practice of cancer nurses to

independently initiate referrals to SPCS, as long as adequate training and education is

provided.

7.8 LIMITATIONS OF THE STUDY

Convenience sampling of two professional nursing memberships was

employed to allow the research student to contact a large number of eligible nurses in

a time-efficient and cost-effective manner. This sampling method limits the

generalisability of these findings to the Australian cancer nursing population and

could have contributed to the low response rate for this study. While the response

rate for this study was lower than other similar studies (Gosselin-Acomb et al., 2007;

Wallace et al., 2015), it was comparable to a study that employed a similar

convenience sampling method (Kitchener, 2016). This low response rate might be

attributed to the distribution method, as web-based surveys are typically associated

with low response rates (Nardi, 2015). For this study, the eligibility criteria also

affected the response rate, as 14.9% of respondents did not meet the inclusion criteria

for this study.

The concept of nursing advocacy was explored in a specific context—cancer

nurses advocating for patient referrals to SPCS in the in-patient setting. While direct

comparisons can only be made in this context, this study provides important

foundational knowledge about the role of the cancer nurse in the referral decision-

making process to SPCS. The conceptualisation of nursing advocacy behaviours


were also limited in this study. These behaviours are not well articulated in the

literature and could involve more complex behaviours than that assessed here. As

with all cross-sectional studies, the results of this study are also prone to self-

reporting bias and recall bias (Nardi, 2015). Clearly, further observational studies of

cancer nursing advocacy behaviours are needed to expand on the current study’s

findings.

The multiple correlation matrix identified three independent variables with

substantial intercorrelations (r > 0.7): total capabilities score, total opportunities

score and total motivations score (Polit & Beck, 2013). These results indicate these

variables are not independent of each other; providing little predictive power to each

other in all the statistical models. In addition, the construction of the NACC

questionnaire prevented the inclusion of incomplete responses in bivariate and

multivariate analysis. Further psychometric testing of the NACC questionnaire is

warranted, as factor analysis and validity testing could improve the discriminant

content and construct validity of the instrument. Factor analysis and construct

validity were not undertaken in this study.

Finally, a model generated using backward stepwise regression may provide a

good fit for the sample, but not generalise well with the population (Field, 2013).

Future research should employ cross-validation methods to determine whether these

relationships exist outside of this sample.

7.9 RECOMMENDATIONS FOR FUTURE RESEARCH

Cronbach’s alpha values confirm the DIBQ constructs can be applied to cancer

nursing advocacy behaviours with high internal consistency for many domains.

However, the question remains as to whether the content and structure of the NACC

questionnaire is relevant to other samples of the cancer nursing population. While a

rigorous process informed the development of the NACC questionnaire, this

questionnaire needs further psychometric testing in other in-patient cancer care

settings. Future studies should ideally examine the perspectives of different samples

of the population to inform the selection of key constructs to be included in a similar

questionnaire.


The NACC questionnaire contained 18 DIBQ-based domains (DOCNAB

subscale) and 11 demographic-based factors to measure the influence of potential

behavioural determinants for cancer nurses when advocating for referrals to SPCS.

Data reduction techniques such as factor analysis need to be employed in future

studies to measure the interrelationships between variables and produce a more

parsimonious set of relevant factors for use in bivariate and multivariate analyses

(Pallant, 2016).

Future implementation studies should consider the motivations of cancer nurses

and their scope of practice to refer to SPCS as key behavioural determinants for

advocating for patient referrals to SPCS. Observational and qualitative studies are

needed to more fully understand the factors contributing to cancer nursing advocacy

behaviours in the in-patient setting. Finally, although the BCW recommends

analysing all relevant behaviours in context, this study only examines the

perspectives and experiences of cancer nurses. Future mixed method studies might

gain an understanding of the referral decision-making process from the perspectives

of all key stakeholders (patients, caregivers, physicians, nurses and allied health

professionals).

7.10 CONCLUSIONS

This study has provided new insight into the cancer nursing advocacy actions

taken to facilitate patient referrals to SPCS in the in-patient setting. Importantly, this

study has also advanced understanding of the behavioural determinants and

demographic factors that influence cancer nursing advocacy behaviours. Cancer

nurses engage in a wide range of behaviours to facilitate patient referrals to SPCS.

However, inconsistencies were noted in the frequency of different types of nursing

advocacy behaviours and key behavioural determinants and demographic factors

associated with these inconsistencies were identified.

While the frequency of nursing advocacy behaviours indicated respondents

considered advocacy to be an integral part of nursing, advocacy practices were

inconsistent across the illness trajectory. The tendency to advocate for referrals

towards the end of life could be explained by the curative focus of the acute care

setting. Cancer nurses also reported engaging in more analysing and counselling


behaviours than responding behaviours. These variations in advocacy practices could

be related to the negative consequences sometimes associated with nursing advocacy

or a lack of organisation support for nurses to refer to SPCS.

Cancer nurses who had positive beliefs, optimism, intentions, goals and

emotions (motivations) towards SPCS engaged more frequently in all types of

nursing advocacy behaviours. Such results indicate the cancer nurse’s belief system

is at the heart of their advocacy actions and contributes towards increasing patient

access to SPCS.

Whether cancer nurses had the scope of practice to refer to SPCS, significantly

influenced their analysing, counselling and responding behaviours. At an

organisational level, nurses are responsible and accountable for providing care that is

permitted by their workplace policy and professional registration. Practising outside

of this scope is a violation of these regulations. Organisations that permitted cancer

nurses to refer to SPCS significantly promoted nursing advocacy behaviours in this

study. Thus, policy changes that permit nurse-led referrals to SPCS will contribute to

greater patient access to the service and provide referral recipients with care in

response to their identified needs.

The findings of this study highlight that the motivations and scope of practice

of cancer nurses are key factors in the frequency of cancer nursing advocacy

behaviours. Based on these results, a number of recommendations for education,

practice and further research are provided. Nursing advocacy is a series of actions

that are integral to the profession. The nursing advocacy process is complex, relying

on the favourable beliefs and professional competence of nurses to act as an

intermediary between the patient and the healthcare team and facilitate referrals to

SPCS.

Organisational support is also needed to provide adequate advocacy training

and support to cancer nurses and permit nurse-led referral pathways to SPCS to

improve patient access to the service. With growing evidence supporting the early

integration of SPCS into the acute cancer care setting, this study focused on the

actions cancer nurses take to facilitate patient referrals to the service. Delayed or

non-referral of patients with advanced cancer to SPCS significantly impacts on the

quality of life of patients and their families. The intimate nature of the nursing role

provides frequent opportunities to effectively engage with patients and families and


develop an acute awareness of their healthcare needs over time. Nurses are well-

placed to escalate matters of concern to the treating medical team early in the disease

trajectory and advocate or refer patients to SPCS where needed.

References 125

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Appendices 137

Records identified through database searches (n = 4361)

Records after 20 duplicates removed (n = 4341)

Abstracts screened (n = 4341)

Excluded as content not relevant

(n = 4250)

Full-text articles assessed for eligibility

(n = 91)

Full-text articles excluded, with reasons (n = 79): • Content not relevant = 27

• <50% sample provided care to those with advanced cancer = 10

• <50% sample worked in acute settings = 14

• Referrals to PCU or non-acute setting = 21

• Data collected after referral = 7

Studies included in qualitative synthesis

(n = 4)

Studies included in quantitative synthesis

(includes mixed methods study) (n = 8)

Appendices

PRISMA Flow diagram

Figure A1. PRISMA flow diagram for inclusion of studies.

Appendices 139

Table B1

The behavioural analysis using the refined TDF domains linked to the COM-B model

Note. TDF = Theoretical Domains Framework; COM-B model = Capability Opportunity Motivation – Behaviour model; SPCS = Specialist Palliative Care Services. Adapted from “The behaviour change wheel: a guide to designing interventions,” by S. Michie, L. Atkins & R. West, 2014, Silverback Publishing, p. 92. Copyright [2014] by S. Michie, L. Atkins & R. West. Adapted with permission from the authors.

Components of COM-B model

TDF domains Integrative review findings relevant to each domain

Physical capability Physical skills No relevant evidence available.

Psychological capability

Knowledge Cognitive & interpersonal skills

Limited evidence indicates palliative care training can lead to an improved understanding of the principles of palliative care.

Memory, attention & decision processes

Healthcare professionals can be conflicted by the need to act on clinical referral cues when they are uncertain about the consequences of the referral.

Behavioral regulation No relevant evidence available.Social & physical opportunity

Social influences Environmental context & resources

The degree of integration between services inhibits/promotes referrals to SPCS. Access to a comprehensive well-resourced SPCS that accepted patients on chemotherapy promoted referrals to service. Group norms and power imbalances influence referral behaviours.

Reflective motivation Social/professional role & identity

Limited evidence indicates a lack of professional boundaries between services inhibited referrals to the SPCS.

Beliefs about capabilities Healthcare professionals’ degree of self-perceived competence and/or confidence in symptom management and/or palliative care discussions directly influenced referral behaviours.

Optimism Limited evidence suggests optimism directly influences their referral behaviours.Intentions Limited evidence indicates the intentions of healthcare professionals informed referral behaviours.Goals A desire to provide a concurrent model of care or receive symptom management support motivated healthcare professionals to refer to SPCS. Beliefs about consequences Healthcare professionals’ beliefs about consequences of referral informed referral behaviours.

Automatic motivation Reinforcement Limited evidence suggests access to specialist assistance motivated referrals to SPCS.

Emotions Limited evidence exists on how emotions affect referral behaviours of healthcare professionals.

Appendices 141

Email invitation, email reminder – content validity

Email invitation – content validity

Subject: Research study about cancer nurses facilitating patient referrals to specialist palliative care services

Dear [insert name],

Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses facilitating patient referrals to specialist palliative care services in the in-patient setting.

As an experienced nurse with expertise in oncology and/or palliative care, we need your feedback on the draft survey instrument.

As you may know from your own research or clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.

This research may benefit patients with cancer and their families. It may also benefit Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services.

We are inviting you to complete the attached survey evaluation form. We want to ensure this survey measures data items that are clear, relevant and appropriate to nurses caring for patients with cancer in the in-patient setting. Your assistance in evaluating whether the items and responses are clear, relevant and appropriate will contribute immensely to the success of this project.

142 Appendices

Please find attached the following resources and materials:

1. Clear definitions of the key constructs and set of instructions 2. Survey evaluation form; 3. Draft survey instrument; 4. Participant Information Sheet

Completion of the survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist in the removal of irrelevant survey items, revision of unclear or poorly worded items and/or addition of new items to the survey instrument.

We really appreciate your feedback in ensuring the actions nurses take to facilitate the referral of patients with cancer to specialist palliative care services in the in-patient setting have been described comprehensively. Your contribution will also ensure we fully capture all the organisational and personal factors that influence these actions.

Can you please return the completed content validity survey evaluation form via email - [email protected] by 24th November 2016. Please feel free to contact me if you have any questions about the enclosed materials.

Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019).

Many thanks for your consideration of this request.

Sarah Northfield

Master of Applied Science (Research) student

3646 2182 [email protected]

School of Nursing, Faculty of Health, Queensland University of Technology

Appendices 143

Reminder invitation – content validity

Subject: CLOSING SOON - Research study about cancer nurses facilitating patient referrals to specialist palliative care services

Dear [insert name],

This email is sent as a reminder. If you have already completed the survey evaluation form, I would like to thank you for your participation. If you have not yet completed an evaluation form for this survey, please review the information below.

The evaluation of this survey will close on 18th November.

Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses facilitating patient referrals to specialist palliative care services in the in-patient setting.

As an experienced nurse with expertise in oncology and/or palliative care, we need your feedback on the draft survey instrument.

As you may know from your own research or clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.


We are inviting you to complete the attached survey evaluation form. We want to ensure this survey measures data items that are clear, relevant and appropriate to nurses caring for patients with cancer in the in-patient setting. Your assistance in evaluating whether the items and responses are clear, relevant and appropriate will contribute immensely to the success of this project.

144 Appendices


1. Clear definitions of the key constructs and set of instructions 2. Survey evaluation form; 3. Draft survey instrument; 4. Participant Information Sheet

Completion of the survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist in the removal of irrelevant survey items, revision of unclear or poorly worded items and/or addition of new items to the survey instrument.

We really appreciate your feedback in ensuring the actions nurses take to facilitate the referral of patients with cancer to specialist palliative care services in the in-patient setting have been described comprehensively. Your contribution will also ensure we fully capture all the organisational and personal factors that influence these actions.

Can you please return the completed content validity survey evaluation form via email - [email protected] by 18th November 2016. Please feel free to contact me if you have any questions about the enclosed materials.

Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019).

Many thanks for your consideration of this request.

Sarah Northfield




Appendices 145

Participant information sheet – content validity

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT

– Content Validity –

Identifying factors that influence referrals to specialist palliative care services for patients with cancer in the in-patient setting

QUT Ethics Approval Number 1600001019

RESEARCH TEAM Principal Researcher: Sarah Northfield Master of Applied Science (Research) student Associate Researchers: Professor Patsy Yates Head of School and Principal Supervisor

A/Prof Raymond Chan Associate Professor and Associate Supervisor Dr John Rosenberg Research Fellow and Associate Supervisor School of Nursing, Faculty of Health Institute of Health and Biomedical Innovation (IHBI) Queensland University of Technology (QUT)

DESCRIPTION This project is being undertaken as part of a Master of Applied Science (Research) degree for Sarah Northfield. The purpose of this project is to identify nurses’ perceptions of the specific actions they take to facilitate the referral of patients with cancer to specialist palliative care services in the in-patient setting and the organisational and personal factors that influence these actions. A draft survey instrument has been developed for this project. Content experts are needed to evaluate whether the survey measures each concept clearly and appropriately. Only Registered Nurses who have completed a Master’s Degree or higher level of education are eligible to participate in content validity. In addition, you will need to achieve one of the following criteria to participate in this study: (i) have worked for a minimum of three years as a cancer nurse in a hospital ward setting; (ii) previous experience developing and testing survey instruments; or (iii) publications in peer-reviewed journals or conference presentations on providing palliative care services in the acute cancer setting. PARTICIPATION Participation in this project will involve completing a survey evaluation form. The survey evaluation form will take approximately 15 minutes to complete. Questions will address issues including how and when you facilitate patient referrals to specialist palliative care services and the factors that influence your referral practices. You will be asked to reflect on your nursing practices and answer questions about topics such as emotional fatigue, burnout, frustration and the work environment. Please ensure you read the remainder of this information sheet and consider all the benefits and risks before deciding whether to participate in this survey. Your participation in this study is completely voluntary. If you agree to participate you do not have to complete any question(s) you are uncomfortable answering. Your decision to participate or not participate will in no way impact on your current or future relationship with QUT. If you do agree to participate, you can withdraw at any time before submitting your survey evaluation form without comment or penalty. Any information already obtained from you will be destroyed. However, as the survey evaluation form is anonymous, once it has been submitted it will not be possible to withdraw.

146 Appendices

EXPECTED BENEFITS It is not expected that this project will directly benefit you. However, it may benefit patients with cancer, Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services. RISKS Potential risks to you are the possible discomfort caused by reviewing some survey items; and the inconvenience of completing a survey evaluation form. When considering the survey content, you will be asked to reflect on your nursing practices and consider questions about topics such as emotional fatigue, burnout, frustration, work environment and professional working relationships which may cause some discomfort. If you experience any discomfort from participating in this research project, QUT provides for limited free psychology, family therapy or counseling services (face-to-face only) for research participants of QUT projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counseling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant. Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. The names of individual persons are not required in the survey evaluation form. All information will be kept secure in locked filing cabinets and on password-protected computer files with access only available to those people directly related to the research. Any data collected as part of this project will be stored securely as per QUT’s Management of Research Data Policy. If you consent to participate, we plan to publish the aggregated results in professional journals. Please note that non-identifiable data collected for this project may be used as comparative data in future projects. CONSENT TO PARTICIPATE Submitting the completed survey evaluation form is accepted as an indication of your consent to participate in this survey. QUESTIONS / FURTHER INFORMATION ABOUT THE PROJECT If you have any questions or require any information, please contact one of the researchers listed below: Sarah Northfield 07 3646 2182 [email protected] Patsy Yates 07 3138 3835 [email protected] Raymond Chan 07 3646 2653 [email protected] John Rosenberg 07 3138 6439 [email protected] CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE PRINT THIS SHEET FOR YOUR INFORMATION.

Appendices 147

Definitions of key constructs & content validity instructions

DEFINITIONS OF KEY CONSTRUCTS Nursing Advocacy Nursing advocacy is defined as “an integral part of the nurse’s efforts to promote and safeguard the well-being and interests of his/her patients or clients by ensuring that they are aware of their rights and have access to information for informed decisions” (Choi, 2015). Nursing advocacy is a series of behaviours that can be considered across four stages: (1) assessing the need for patient advocacy, (2) identifying the goals of patient advocacy, (3) planning and implementing advocacy actions, and (4) evaluating the outcomes of patient advocacy (Choi, 2015). Advanced cancer For patients with solid tumours, advanced cancer is recognised as metastatic disease (National Cancer Institute, 2015) and/or when locally advanced disease is not amenable to cure (American Cancer Society, 2016). There is no clear definition for advanced disease in the haematology setting (Button et al., 2016). However, progressive or relapsed disease is considered a common characteristic of people with a haematologic malignancy towards the end of life (Button et al., 2016; McGrath & Holewa, 2007). Specialist palliative care services Specialist palliative care services (SPCS) provide direct care to patients who have a life-threatening illness and complex care needs (Johnson et al., 2008; World Health Organization, 2017). The service composition is variable – it may be uni-disciplinary (i.e., nurses only) (Johnson et al., 2011) or a multidisciplinary (including nurses, physicians and sometimes social workers, counsellors, pastoral care or other allied health professionals) team who have completed specialist palliative care training (Finlay, 2001; PCA, 2016). Members of the team provide palliative care services, which include symptom management, patient advocacy and facilitating treatment decision-making and prognostic discussions between the patient, their family and the healthcare team. INSTRUCTIONS FOR COMPLETING THE SURVEY EVALUATION FORM Please read through the survey and complete the Survey Evaluation Form attached. If your area of expertise does not cover a specific question set out on the Survey Evaluation Form, then please just state ‘not applicable’. Please provide a rationale for any suggested additions, deletions or substitutions to the draft survey instrument. This survey is in draft stages only. Please keep in mind that currently this is a paper-based copy of the survey and the survey may look slightly different once survey software has been used to develop the online version of the survey. Your expert opinions in assistance with assessing this survey are highly valued. Please return the completed content validity survey evaluation form via email - [email protected] by 18/11/2016. Thank you very much for your time and I look forward to receiving your responses. Warm regards, Sarah Northfield (Master of Applied Science (Research) student, QUT)

148 Appendices

Initial NACC questionnaire

This questionnaire is not a test of your knowledge, but a way for us to find out some of the

facilitators and barriers that influence nurses facilitating patient referrals to specialist palliative care

services in the in-patient setting. Please answer the following questions as honestly as you can.

1. a) Which of the following BEST describes your employment status? (select one only) o I am employed as a Registered Nurse

o I am employed as a nurse practitioner

o Not currently employed

o Retired

If employed as a Registered Nurse or nurse practitioner is selected above, the following question will appear: 1. b) What is your employment status? (select one only)

o Full-time

o Part-time

2. In your current role, do you spend ANY time caring for patients with cancer in a

hospital ward setting? (select one only)

o Yes

o No

Appendices 149

3. What specialist palliative care services are available to patients in your hospital/health service? (select one only)

o There is a dedicated specialist palliative care service as part of our hospital/health service

o There is no dedicated specialist palliative care service as part of our hospital/health services,

but patients can be referred to external specialist palliative care services

o There is no dedicated specialist palliative care service as part of our hospital/health service,

and patients cannot be referred to external specialist palliative care services

o I don’t know what specialist palliative care services are available in my hospital/health

service

4. Which of the following BEST describes the PRIMARY focus of your current role? (select one only) o Clinical

o Education

o Research

o Management

5. How long have you been working as a cancer nurse?

Free text box provided. (e.g., 1year 2months)

6. Which of the following categories BEST describes your current area/s of practice?

(select all that apply)

o Medical Oncology

o Haematology and/or Bone Marrow Transplant

o Radiation Oncology

o Surgical Oncology

o Other (please specify)

150 Appendices

7. What is your HIGHEST LEVEL of education completed in nursing? (select one only) o Hospital certificate

o Bachelor’s degree

o Postgraduate certificate

o Postgraduate diploma

o Master’s degree

o PhD or other doctorate

8. Have you completed palliative care specific education as part of any of the following?


o Undergraduate education

o Workshops/seminars/conferences

o Hospital in-service programs (self-directed or face-to-face)

o Clinical placements as an RN

o Self-directed education



o Master’s degree (coursework or research)


o I have not completed any palliative care specific education

9. As a Registered Nurse, have you ever worked for specialist palliative care services?

(select one only)

o Yes

o No

If yes is selected for the question above, the following question will appear:

10. How long did you work in specialist palliative care services?

Free text box provided. (e.g., 1year 2months) 11. Please enter the post code of your workplace:

Free text box provided (*please list the postcode for the workplace where you provide in-patient care). Note: This information is being collected to map the geographical location of your workplace and will

provide information about the accessibility of SPCS nationally. Once mapping is complete, all identifiable

information will be deleted from the database to protect your identity.

Appendices 151

12. Thinking about the past year, how often did you perform the activities listed below

for patients with advanced cancer (i.e., metastatic; relapsed; progressive; or locally

advanced incurable disease)?

Please select one category for each statement below.

Never Rarely Some-times

Often Always

Assess whether patients have a good understanding of their treatment options

0 1 2 3 4


0 1 2 3 4


0 1 2 3 4

Ask patients to identify their goals of care 0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4

Facilitate referral to specialist palliative care services

0 1 2 3 4

Independently refer patients to specialist palliative care services

0 1 2 3 4

152 Appendices

13. Thinking about the past year, please indicate how often you facilitated referrals to

specialist palliative care services for patients in the following circumstances:



Often Always

At diagnosis of cancer, regardless of prognosis

0 1 2 3 4

At diagnosis of advanced cancer (i.e., metastatic; relapsed; progressive; or locally advanced incurable disease)

0 1 2 3 4

During treatment (i.e., chemotherapy or radiation therapy) that aims to provide disease control for advanced cancer

0 1 2 3 4

When no further curative treatment can be offered for advanced cancer

0 1 2 3 4

When supportive treatments (e.g., blood transfusions, antibiotics) have been stopped

0 1 2 3 4

When end-of-life care is imminent 0 1 2 3 4

Appendices 153


Please indicate your level of agreement with the following statements:

Strongly Disagree

Disagree Somewhat disagree

Neither agree or disagree

Somewhat agree

Agree Strongly agree

14. I know how to facilitate a patient referral to specialist palliative care services. 1 2 3 4 5 6 7

15. The objectives of patient referrals to specialist palliative care services and my role in this are clearly defined for me.

1 2 3 4 5 6 7

16. With regard to facilitating a patient referral to specialist palliative care services, I know what my responsibilities are.

1 2 3 4 5 6 7

17. In my work as a cancer nurse, I know exactly what is expected from me when I facilitate patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

18. I have been trained in facilitating patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

154 Appendices

Strongly Disagree



Somewhat agree


19. I have the skills to facilitate patient referrals to specialist palliative care services. 1 2 3 4 5 6 7

20. I have the skills to directly refer a patient to specialist palliative care services. 1 2 3 4 5 6 7

21. I am practiced at facilitating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

22. Facilitating patient referrals to specialist palliative care services is part of my work as a nurse.

1

2

3

4

5

6

7

23. As a nurse, it is my job to facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

24. It is my responsibility as a nurse to facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

25. I am confident that I can facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

Appendices 155

Strongly Disagree



Somewhat agree


26. I am confident I can provide patients with information about specialist palliative care services.

1

2

3

4

5

6

7

27. I am confident that I can facilitate patient referrals to specialist palliative care services, even when other healthcare professionals do not do this.

1

2

3

4

5

6

7

28. I am confident that I can facilitate patient referrals to specialist palliative care services, even when there is limited time.

1

2

3

4

5

6

7

29. I am confident that I can facilitate patient referrals to specialist palliative care services when patients are unable to speak up about their wishes.

1

2

3

4

5

6

7

30. I have control over facilitating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

156 Appendices

For each statement below, please select the number below that best represents how you feel:

Very difficult

Difficult Somewhat Difficult

Neither difficult or easy

Somewhat easy

Easy Very Easy

31. For me, assessing whether patients have a good understanding of their treatment options is…

1

2

3

4

5

6

7

32. For me, identifying the need for patient referrals to specialist palliative care services is…

1

2

3

4

5

6

7

33. For me, asking patients to identify their goals of care is…

1

2

3

4

5

6

7

34. For me, discussing the need to refer patients to specialist palliative care services with the treating doctor is…

1

2

3

4

5

6

7

Appendices 157

Please select one category for each statement below. Please indicate your level of agreement with the following statements:

Strongly Disagree



Somewhat agree


35. When facilitating referrals to specialist palliative care services, in uncertain times, I usually expect the best possible outcomes for my patients.

1

2

3

4

5

6

7

36. When facilitating patient referrals to specialist palliative care services, I’m always optimistic about the future.

1

2

3

4

5

6

7

37. When facilitating patient referrals to specialist palliative care services, overall, I expect more good things to happen than bad.

1

2

3

4

5

6

7

158 Appendices

For each statement below, select the mark on the line between the two descriptions which you think best describes your experiences relative to the two extremes. These two statements refer to the degree to which you find facilitating patient referrals to specialist palliative care services to be a useful or worthwhile experience. For me, facilitating patient referrals to specialist palliative care services is… 38. Not useful Very useful 39. Not worthwhile at all Very worthwhile


Strongly Disagree



Somewhat agree


40. If I facilitate referrals to specialist palliative care services, based on patient needs, my actions will be effective.

1

2

3

4

5

6

7

41. If I facilitate patient referrals to specialist palliative care services, patients will appreciate this.

1

2

3

4

5

6

7

Appendices 159

Strongly Disagree



Somewhat agree


42. If I facilitate patient referrals to specialist palliative care services, this will strengthen collaborations within the healthcare team.

1

2

3

4

5

6

7

43. If I facilitate patient referrals to specialist palliative care services, I will feel like I am making a difference.

1

2

3

4

5

6

7

44. If I facilitate patient referrals to specialist palliative care services, it will reduce patient distress.

1

2

3

4

5

6

7

45. When I facilitate patient referrals to specialist palliative care services, I get recognition from colleagues who are important to me.

1

2

3

4

5

6

7

46. When I facilitate patient referrals to specialist palliative care services, I get recognition from my patients.

1

2

3

4

5

6

7

47. I intend to facilitate patient referrals to specialist palliative care services, even if I know the treating doctor does not have a good relationship with specialist palliative care services.

1

2

3

4

5

6

7

48. I intend to facilitate patient referrals to specialist palliative care services, even if patients wish to continue active cancer treatment.

1

2

3

4

5

6

7

160 Appendices

Please select one category for each statement below. Please indicate your level of agreement with the following statements: Never Seldom Sometimes Regularly Often Almost

AlwaysAlways

49. Generally, how often are other nursing tasks a higher priority than facilitating patient referrals to specialist palliative care services?

1

2

3

4

5

6

7

50. Generally, how often are other nursing tasks more urgent than facilitating patient referrals to specialist palliative care services?

1

2

3

4

5

6

7

Appendices 161


Strongly Disagree



Somewhat agree


51. The evidence about the benefits of providing specialist palliative care services to patients with advanced cancer is very strong.

1

2

3

4

5

6

7

52. Facilitating patient referrals to specialist palliative care services adds value to patient care.

1

2

3

4

5

6

7

53. Facilitating patient referrals to specialist palliative care services costs little time to provide.

1

2

3

4

5

6

7

54. Facilitating patient referrals to specialist palliative care services is part of my daily practice.

1

2

3

4

5

6

7

55. Facilitating patient referrals to specialist palliative care services is simple.

1

2

3

4

5

6

7

56. Health service authorities provide clear guidelines and training about how to facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

57. There are sufficient nursing staff to allow nurses to facilitate patient referrals to specialist palliative care services

1

2

3

4

5

6

7

58. The in-patient setting supports interventions such as patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

162 Appendices

Strongly Disagree



Somewhat agree


59. In the organisation I work, all the necessary resources are available to provide specialist palliative care services where needed.

1

2

3

4

5

6

7

60. I can count on support from the management of the organisation I work in when things get tough trying to facilitate referrals to specialist palliative care services.

1

2

3

4

5

6

7

61. In the organisation I work in, supportive working relationships exist between cancer care services and specialist palliative care services.

1

2

3

4

5

6

7

62. In the organisation I work in, supportive working relationships exist between cancer nurses and specialist palliative care services.

1

2

3

4

5

6

7

63. In the organisation I work in, there is sufficient patient access to specialist palliative care services.

1

2

3

4

5

6

7

64. In my workplace, specialist palliative care services accept patients receiving curative cancer treatment.

1

2

3

4

5

6

7

65. In my workplace, patients with complex care needs are routinely referred to specialist palliative care services.

1

2

3

4

5

6

7

Appendices 163

Strongly Disagree



Somewhat agree


66. My workplace provides healthcare professionals with the training to facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

67. My workplace performs routine needs assessments for patients with advanced cancer.

1

2

3

4

5

6

7

68. My workplace provides decision-making tools to assist healthcare professionals decide when to refer patients to specialist palliative care services.

1

2

3

4

5

6

7

69. My workplace routinely provides information about specialist palliative care services to patients with advanced cancer.

1

2

3

4

5

6

7

70. Most people who are important to me think that I should facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

71. Healthcare professionals with whom I provide patient care think I should facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

72. Nursing colleagues with whom I provide patient care facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

164 Appendices

Strongly Disagree



Somewhat agree


73. Other healthcare professionals with whom I provide patient care facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

74. I can count on support from healthcare professionals with whom I provide patient care when things get tough facilitating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

75. Healthcare professionals with whom I provide patient care are willing to listen to my problems with facilitating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

76. Healthcare professionals with whom I provide patient care are helpful with facilitating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

Appendices 165

Please select one category for each statement below. For each statement below, please indicate how often you feel this way:

Never Seldom Some-times

Regularly Often Almost Always

Always

77. When I work with other members of the healthcare team to facilitate patient referrals to specialist palliative care services, I feel optimistic that we will achieve this outcome.

1 2 3 4 5 6 7

78. When I facilitate patient referrals to specialist palliative care services, I feel useful to patients.

1 2 3 4 5 6 7

79. I feel calm when I think about facilitating patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

80. I feel distressed when I think about facilitating patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

81. I feel concerned referrals to specialist palliative care services will jeopardise my relationship with patients.

1 2 3 4 5 6 7

82. I feel frustrated when trying to facilitate patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

83. Emotional fatigue prevents me from facilitating more patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

84. Burnout prevents me from facilitating more patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

166 Appendices


Strongly disagree



Somewhat agree


85. I have a clear plan of how I will facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

86. I have a clear plan under what circumstances I will facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

87. I have a clear plan when I will facilitate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

88. I have a clear plan with regard to facilitating patient referrals to specialist palliative care services, when patients are not familiar with the service.

1

2

3

4

5

6

7

89. I have a clear plan with regard to facilitating patient referrals to specialist palliative care services when there is little time.

1

2

3

4

5

6

7

90. I have a clear plan with regard to facilitating patient referrals to specialist palliative care services, when other healthcare professionals with whom I provide patient care do not do this.

1

2

3

4

5

6

7

Appendices 167

Strongly

disagree Disagree Somewhat

disagree Neither agree or disagree

Somewhat agree


91. Facilitating patient referrals to specialist palliative care services is something I do automatically

1

2

3

4

5

6

7

92. Facilitating patient referrals to specialist palliative care services is something I do without having to consciously remember.

1

2

3

4

5

6

7

93. Facilitating patient referrals to specialist palliative care services is something I do without thinking.

1

2

3

4

5

6

7

94. Facilitating patient referrals to specialist palliative care services is something I start doing before I realise I am doing it.

1

2

3

4

5

6

7

168 Appendices

Please select one category for each statement below. 95. To what extent do you agree that the following statements are reasons to facilitate patient referrals to specialist palliative care services?

Strongly disagree



Somewhat agree


The patient has a diagnosis of advanced cancer 1 2 3 4 5 6 7

The patient has uncontrolled physical symptoms 1 2 3 4 5 6 7

You can foresee the future need for symptom control 1 2 3 4 5 6 7

The patient has complex psychosocial needs 1 2 3 4 5 6 7

There are complex family needs 1 2 3 4 5 6 7

The family is not coping emotionally 1 2 3 4 5 6 7

The patient is not coping emotionally 1 2 3 4 5 6 7

The patient / family needs spiritual support 1

2

3

4

5

6

7

The patient is receiving treatment with palliative intent 1

2

3

4

5

6

7

Thank you for taking the time to complete this questionnaire.

Appendices 169

Survey evaluation form – content validity

Survey Evaluation Form PLEASE READ THESE INSTRUCTIONS FIRST The survey aims to measure the actions cancer nurses take in the in-patient setting to facilitate patient referrals to specialist palliative care services and the organisational and personal factors that influence these actions. When reading through the survey, do you find the questions and response options:

• Clear? • Appropriate? • Relevant?

Please indicate whether you think that any of the questions or response options should be deleted or revised in the final instrument. *PLEASE REVIEW SURVEY AND PARTICIPANT INFORMATION SHEET*

1. Referring to the Participant Information Sheet: Was the aim of the survey stated

clearly?

Yes No 2. If not, how do you suggest that it be improved?

3. Referring to the entire survey: Was there enough information provided in the

instructions?

Yes No

170 Appendices

4. If not, how do you suggest that this be improved?

5. Do you think that I need to provide any additional information or background

about the specific nursing activities listed in the survey?

Yes No 6. If yes, how do you suggest that this be improved?

7. In general, can you suggest any other questions that should be asked that were

not on the survey?

Appendices 171

8. Now relating to specific questions on the survey. Consider the survey question below - is the wording of ANY of these categories unclear?

Thinking about the past year, please indicate how often you facilitated referrals to specialist palliative care services for patients in the following circumstances: Please select one category for each statement below.

Never Rarely Sometimes Often Always






When end-of-life care is imminent

Yes- Please give details in space below: No

172 Appendices

9. Consider the survey question below - is the wording of ANY of these categories unclear?

Please select one category for each statement below. To what extent do you agree that the following statements are reasons to facilitate patient referrals to specialist palliative care services?

Strongly disagree Disagree

Somewhat disagree


Somewhat agree Agree

Strongly agree

The patient has a diagnosis of advanced cancer

1 2 3 4 5 6 7

The patient has uncontrolled physical symptoms

1 2 3 4 5 6 7

You can foresee the future need for symptom control

1 2 3 4 5 6 7

The patient has complex psychosocial needs

1 2 3 4 5 6 7




The patient / family needs spiritual support

1 2 3 4 5 6 7

The patient is receiving treatment with palliative intent

1 2 3 4 5 6 7

Yes - Please give details in space below: No

10. Are any of the other survey questions or response options unclear?

Yes- Please give details in space below: No

Appendices 173

11. Are any of the other survey questions or response options irrelevant for

measuring the factors that influence when and how often nurses facilitate referrals to specialist palliative care services?

Yes- Please give details in space below: No 12. Do you have any other comments to add?

Thank you for taking the time to complete this survey evaluation form! The research team really appreciates your participation.

174 Appendices

Email invitation, email reminder – face validity & pilot testing

Email invitation – face validity & pilot testing

Subject: Invitation to participate in research study about cancer nurses advocating for patient referrals to specialist palliative care services

Dear [insert name],

Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses advocating for patient referrals to specialist palliative care services in the in-patient setting.

As an experienced cancer nurse, we need your feedback on the draft survey instrument.

As you may know from your own clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases, even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.


We are inviting you to complete an online survey and the attached survey evaluation form. As you complete the online survey, please have the survey evaluation form readily accessible. Complete each section of the form as you progress through the survey. We want to ensure the survey items make sense and flow logically. Your assistance in evaluating these items will contribute immensely to the success of this project.

Appendices 175


(1) Participant Information Sheet

(2) Set of instructions for pilot testing and completing the survey;

(3) Survey evaluation form

You can access the Participant Information Sheet and anonymous survey by clicking on the link below: [URL]

Participation in the online survey and survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist me in measuring whether the data items are clear and flow logically.

We would appreciate you completing the online survey by clicking on the link above (responses will be saved when you click the submit button). Please return the completed survey evaluation form via email - [email protected]. Can you please return the completed online survey and survey evaluation form by 2nd December. Please feel free to contact me if you have any questions about the enclosed materials.

Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019). Many thanks for your consideration of this request.

Sarah Northfield




176 Appendices

Email reminder – face validity & pilot testing

Subject: CLOSING SOON - Invitation to participate in a research study about cancer nurses advocating for patient referrals to specialist palliative care services

Dear [insert name],

This email is sent as a reminder. If you have already completed the survey evaluation form, I would like to thank you for your participation. If you have not yet completed an evaluation form for this survey, please review the information below.

Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses advocating for patient referrals to specialist palliative care services in the in-patient setting.

As an experienced cancer nurse, we need your feedback on the draft survey instrument. If you would like to participate, please provide your feedback on this survey by 2nd December.

As you may know from your own clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases, even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.


We are inviting you to complete an online survey and the attached survey evaluation form. As you complete the online survey, please have the survey evaluation form readily accessible. Complete each section of the form as you progress through the survey. We want to ensure the survey items make sense and flow logically. Your assistance in evaluating these items will contribute immensely to the success of this project.

Appendices 177


(1) Participant Information Sheet

(2) Set of instructions for pilot testing and completing the survey;

(3) Survey evaluation form

You can access the Participant Information Sheet and anonymous survey by clicking on the link below: [URL]

Participation in the online survey and survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist me in measuring whether the data items are clear and flow logically.

We would appreciate you completing the online survey by clicking on the link above (responses will be saved when you click the submit button). Please return the completed survey evaluation form via email - [email protected]. Can you please return the completed online survey and survey evaluation form by 2nd December. Please feel free to contact me if you have any questions about the enclosed materials.

Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019). Many thanks for your consideration of this request.

Sarah Northfield




Appendices 179

Pilot test instructions

INSTRUCTIONS FOR PILOT TESTING Please read the Participant Information Sheet attached to this email before deciding whether you wish to participate in this study. If you wish to participate in this study, please click on the link in the email invitation to access the online survey. Please complete the survey as if you were a participant and provide feedback on your experience. When participating in pilot testing of this survey, please provide feedback on the following:

• How long did it take to complete the survey? • Were the survey instructions clear? • Could you understand all the survey questions?

PLEASE SUBMIT YOUR RESPONSES TO THE ONLINE SURVEY BY

CLICKING THE SUBMIT BUTTON BY 2ND DECEMBER. INSTRUCTIONS FOR COMPLETING THE SURVEY EVALUATION FORM As you complete the online survey, please have the survey evaluation form readily accessible. Complete each section of the survey evaluation form as you progress through the online survey. As you read each question in the online survey, please consider the following question - At a glance – does this survey item make sense? In addition, please indicate whether you think the wording of any the questions or response options should be revised in the final survey instrument. Please provide a rationale for any suggested changes to the draft survey instrument. This survey is in draft stages only. Your expertise and time taken to assess this survey is highly valued. Please return the completed survey evaluation form via email - [email protected] by 2nd December. Thank you very much for your time and I look forward to receiving your feedback. Warm regards Sarah Northfield (Master of Applied Science (Research) student, QUT).

Appendices 181

Participant information sheet – face validity & pilot testing

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT

– Face Validity & Pilot Testing –

Identifying factors that influence referrals to specialist palliative care services for patients with cancer in the in-patient setting

QUT Ethics Approval Number 1600001019

RESEARCH TEAM Principal Researcher: Sarah Northfield Master of Applied Science (Research) student Associate Researchers: Professor Patsy Yates Head of School and Principal Supervisor

A/Prof Raymond Chan Associate Professor and Associate Supervisor Dr John Rosenberg Research Fellow and Associate Supervisor School of Nursing, Faculty of Health Institute of Health and Biomedical Innovation (IHBI) Queensland University of Technology (QUT)

DESCRIPTION This project is being undertaken as part of a Master of Applied Science (Research) degree for Sarah Northfield. The purpose of this project is to identify nurses’ perceptions of the specific actions they take to advocate for the referral of patients with cancer to specialist palliative care services in the in-patient setting and the organisational and personal factors that influence these actions. A draft survey instrument has been developed for this project. Cancer nurses are needed to evaluate whether the survey instructions, items and response options make sense and flow logically. Only QUT postgraduate nursing students who spend some time providing care for patients with cancer in the in-patient setting are eligible to participate in this study. PARTICIPATION Participation in this project will involve pilot testing the online survey (completing the survey as if you were a survey participant) and completing a survey evaluation form. The online survey and survey evaluation form will take approximately 25 minutes to complete. As you complete the online survey, please consider the following question – at a glance – does this survey item make sense? The draft survey items will address issues including how and when you advocate for patient referrals to specialist palliative care services and the factors that influence your referral practices. You will be asked to reflect on your nursing practices and answer questions about topics such as emotional fatigue, burnout, frustration and the work environment. Please ensure you read the remainder of this information sheet and consider all the benefits and risks before deciding whether to participate in this survey. Your participation in this study is completely voluntary. If you agree to participate you do not have to complete any question(s) you are uncomfortable answering. Your decision to participate or not participate will in no way impact on your current or future relationship with the Master of Applied Science (Research) candidate, research team members or QUT. If you do agree to participate, you can withdraw at any time before submitting your online survey or survey evaluation form without comment or penalty. However, as the online survey and survey evaluation form are anonymous, once they have been submitted it will not be possible to withdraw.

182 Appendices

EXPECTED BENEFITS It is not expected that this project will directly benefit you. However, it may benefit patients with cancer, Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services. RISKS Potential risks to participants are the possible discomfort caused by reviewing some survey items; and the inconvenience of completing a survey. When considering the survey content, you will be asked to reflect on your nursing practices and consider questions about topics such as emotional fatigue, burnout, frustration, work environment and professional working relationships which may cause some discomfort. If you experience any discomfort from participating in this research project, QUT provides for limited free psychology, family therapy or counseling services (face-to-face only) for research participants of QUT projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counseling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant. Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. The names of individual persons are not required in the online survey or survey evaluation form. All information will be kept secure in locked filing cabinets and on password-protected computer files with access only available to those people directly related to the research. Any data collected as part of this project will be stored securely as per QUT’s Management of Research Data Policy. If you consent to participate, we plan to publish the aggregated results in professional journals. Please note that non-identifiable data collected for this project may be used as comparative data in future projects. CONSENT TO PARTICIPATE Submitting the completed online survey and / or survey evaluation form is accepted as an indication of your consent to participate in this survey. QUESTIONS / FURTHER INFORMATION ABOUT THE PROJECT If you have any questions or require any information, please contact one of the researchers listed below: Sarah Northfield 07 3646 2182 [email protected] Patsy Yates 07 3138 3835 [email protected] Raymond Chan 07 3646 2653 [email protected] John Rosenberg 07 3138 6439 [email protected] CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.

Appendices 183

Survey evaluation form – face validity

Survey Evaluation Form PLEASE READ THESE INSTRUCTIONS FIRST The survey aims to measure the actions cancer nurses take in the in-patient setting to advocate for patient referrals to specialist palliative care services and the organisational and personal factors that influence these actions. When completing the online survey, please consider the following question - at a glance – do these survey items make sense? Please indicate whether you think the wording of the instructions, items or response options should be revised in the final instrument. *PLEASE REVIEW THE SURVEY & FACE VALIDITY PARTICIPANT INFORMATION SHEETS*

1. Do you spend any time providing care to patients with cancer in the in-patient setting? Yes No ** **If you selected “no” to the above question, please do not complete the remainder of this form. Unfortunately you do not meet the eligibility criteria to participate in this project. Thank you for your time and consideration of this research project.

2. Referring to the Survey Participant Information Sheet: Was the aim of the survey stated clearly? Yes No

3. If not, how do you suggest that it be improved?

184 Appendices

4. Referring to the entire survey: Was there enough information provided in the instructions? Yes No

5. If not, how do you suggest that this be improved?

6. How long did it take to complete the online survey?

(minutes)

7. Do you think that I need to provide any additional information or background about the specific nursing activities listed in the survey? Yes No

8. If yes, how do you suggest that this be improved?

Appendices 185

9. Now relating to specific questions on the survey. Consider the survey question below - is the wording of ANY of these categories unclear?

Thinking about the past year, please indicate how often you advocated for patient referrals to specialist palliative care services in the following circumstances: Please select one category for each statement below.

Never Rarely Sometimes Often Always At diagnosis of cancer, regardless of prognosis.

At diagnosis of advanced cancer (i.e., metastatic; relapsed; progressive; or locally advanced incurable disease).

During treatment (i.e., surgery, chemotherapy, radiation or monoclonal antibody therapy) that aims to provide disease control for advanced cancer.

When no further curative treatment can be offered for advanced cancer.

When supportive treatments (e.g., blood transfusions, antibiotics) have been stopped.

When end of life is imminent. Yes- Please give details in space below: No

186 Appendices

10. Consider the survey question below - is the wording of ANY of these categories unclear?

To what extent do you agree that the following statements are reasons to advocate for patient referrals to specialist palliative care services? Please select one category for each statement below.

Strongly disagree Disagree

Somewhat disagree


Somewhat agree Agree

Strongly agree

The patient has a diagnosis of advanced cancer.

1 2 3 4 5 6 7

The patient has uncontrolled physical symptoms.

1 2 3 4 5 6 7

You can foresee the future need for symptom control.

1 2 3 4 5 6 7

The patient has complex psychosocial needs. 1 2 3 4 5 6 7

The family has complex psychosocial needs. 1 2 3 4 5 6 7

The family is not coping emotionally. 1 2 3 4 5 6 7

The patient is not coping emotionally. 1 2 3 4 5 6 7

The patient needs spiritual support. 1 2 3 4 5 6 7

The family needs spiritual support. 1 2 3 4 5 6 7

The patient is receiving treatment with palliative intent.

1 2 3 4 5 6 7

Yes - Please give details in space below: No

Appendices 187

11. Are any of the other survey questions or response options difficult to understand? Yes- Please give details in space below: No

12. Are any of the other survey questions or response options irrelevant for

measuring the factors that influence when and how often nurses facilitate referrals to specialist palliative care services? Yes- Please give details in space below: No

13. Do you have any other comments to add?

Thank you for taking the time to complete this survey evaluation form!

The research team really appreciates your participation.

Appendices 189

Final NACC questionnaire

This questionnaire is not a test of your knowledge, but a way for us to find out some of the

facilitators and barriers that influence nurses advocating for patient referrals to specialist

palliative care services in the in-patient setting. Please answer the following questions as

honestly as you can.

1. a) Which of the following BEST describes your employment status? (select one only) o I am employed as a Registered Nurse

o I am employed as a nurse practitioner

o Not currently employed

o Retired

If employed as a Registered Nurse or nurse practitioner is selected above, the following question will appear: 1. b) What is your employment status? (select one only)

o Full-time

o Part-time

2. In your current role, do you spend ANY time caring for patients with cancer

in a hospital ward setting? (select one only)

o Yes

o No

190 Appendices

3. What specialist palliative care services are available to patients in your hospital/health service? (select one only)

o There is a dedicated specialist palliative care service as part of our hospital/health service

o There is no dedicated specialist palliative care service as part of our hospital/health services,

but patients can be referred to external specialist palliative care services

o There is no dedicated specialist palliative care service as part of our hospital/health service,

and patients cannot be referred to external specialist palliative care services

o I don’t know what specialist palliative care services are available in my hospital/health

service

4. Which of the following BEST describes the PRIMARY focus of your current role? (select one only) o Clinical

o Education

o Research

o Management

5. How long have you been working as a cancer nurse?

Free text box provided. (e.g., 1year 2months)

6. In your workplace, is it within your scope of practice to directly refer to specialist

palliative care services?

o Yes

o No

7. Which of the following categories BEST describes your current area/s of practice?


o Medical Oncology

o Haematology and/or Bone Marrow Transplant

o Radiation Oncology

o Surgical Oncology

o Other (please specify)

Appendices 191

8. What is your HIGHEST LEVEL of education completed in nursing? (select one only) o Hospital certificate

o Bachelor’s degree



o Master’s degree


9. Have you completed palliative care specific education as part of any of the

following? (select all that apply)

o Undergraduate education

o Workshops/seminars/conferences

o Hospital in-service programs (self-directed or face-to-face)

o Clinical placements as an RN

o Self-directed education



o Master’s degree (coursework or research)


o I have not completed any palliative care specific education

10. a) As a Registered Nurse, have you ever worked for specialist palliative care

services? (select one only)

o Yes

o No

If yes is selected for the question above, the following question will appear:

10. b) How long did you work in specialist palliative care services?

Free text box provided. (e.g., 1year 2months) 11. Please enter the post code of your workplace:

Free text box provided (*please list the postcode for the workplace where you provide in-patient care). Note: This information is being collected to map the geographical location of your workplace and will

provide information about the accessibility of SPCS nationally. Once mapping is complete, all identifiable

information will be deleted from the database to protect your identity.

192 Appendices

12. Thinking about the past year, how often did you perform the activities listed

below for patients with advanced cancer (i.e., metastatic; relapsed; progressive;

or locally advanced incurable disease)?



Often Always

Assess whether patients have a good understanding of their treatment options

0 1 2 3 4


0 1 2 3 4


0 1 2 3 4

Ask patients to identify their goals of care 0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4

Advocate for patient referrals to specialist palliative care services

0 1 2 3 4

Independently refer patients to specialist palliative care services

0 1 2 3 4

Appendices 193

13. Thinking about the past year, please indicate how often you advocated

referrals to specialist palliative care services for patients in the following

circumstances:



Often Always


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4

When end of life is imminent 0 1 2 3 4

194 Appendices

Please select one category for each statement below. 14. To what extent do you agree that the following statements are reasons to advocate patient referrals to specialist palliative care services?

Strongly disagree



Somewhat agree


The patient has a diagnosis of advanced cancer 1 2 3 4 5 6 7

The patient has uncontrolled physical symptoms 1 2 3 4 5 6 7

You can foresee the future need for symptom control 1 2 3 4 5 6 7

The patient has complex psychosocial needs 1 2 3 4 5 6 7




The patient needs spiritual support 1

2

3

4

5

6

7

The family needs spiritual support 1

2

3

4

5

6

7

The patient is receiving treatment with palliative intent 1

2

3

4

5

6

7

Appendices 195


Please indicate your level of agreement with the following statements:

Strongly Disagree



Somewhat agree


15. As a nurse, it is my job to advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

16. Advocating for patient referrals to specialist palliative care services is part of my work as a nurse.

1

2

3

4

5

6

7

17. I know how to advocate a patient referral to specialist palliative care services. 1 2 3 4 5 6 7

18. The objectives of patient referrals to specialist palliative care services and my role in this are clearly defined for me.

1 2 3 4 5 6 7

19. With regard to advocating a patient referral to specialist palliative care services, I know what my responsibilities are.

1 2 3 4 5 6 7

20. In my work as a cancer nurse, I know exactly what is expected from me when I advocate for patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

21. I have received training in how to advocate for patient referrals to specialist palliative care services. 1 2 3 4 5 6 7

196 Appendices

Strongly Disagree



Somewhat agree


22. I have the skills to advocate for patient referrals to specialist palliative care services. 1 2 3 4 5 6 7

23. I have the skills to directly refer a patient to specialist palliative care services. 1 2 3 4 5 6 7

24. I am practiced at advocating for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

25. I am confident that I can advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

Appendices 197

Strongly disagree



Somewhat agree


26. I am confident I can provide patients with information about specialist palliative care services.

1

2

3

4

5

6

7

27. I am confident that I can advocate for patient referrals to specialist palliative care services, even when other healthcare professionals do not do this.

1

2

3

4

5

6

7

28. I am confident that I can advocate for patient referrals to specialist palliative care services, even when there is limited time.

1

2

3

4

5

6

7

29. I am confident that I can advocate for patient referrals to specialist palliative care services when patients are unable to speak up about their wishes.

1

2

3

4

5

6

7

30. I have control over advocating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

198 Appendices

For each statement below, please select the number below that best represents how you feel:

Very difficult

Difficult Somewhat Difficult

Neither difficult or easy

Somewhat easy

Easy Very Easy

31. For me, assessing whether patients have a good understanding of their treatment options is…

1

2

3

4

5

6

7

32. For me, identifying the need for patient referrals to specialist palliative care services is…

1

2

3

4

5

6

7

33. For me, asking patients to identify their goals of care is…

1

2

3

4

5

6

7

34. For me, discussing the need to refer patients to specialist palliative care services with the treating doctor is…

1

2

3

4

5

6

7

Appendices 199


Strongly Disagree



Somewhat agree


35. When advocating for referrals to specialist palliative care services, in uncertain times, I usually expect the best possible outcomes for my patients.

1

2

3

4

5

6

7

36. When advocating for patient referrals to specialist palliative care services, I’m always optimistic about the future.

1

2

3

4

5

6

7

37. When advocating for patient referrals to specialist palliative care services, overall, I expect more good things to happen than bad.

1

2

3

4

5

6

7

200 Appendices

For each statement below, select the mark on the line between the two descriptions which you think best describes your experiences relative to the two extremes. These two statements refer to the degree to which you find advocating for patient referrals to specialist palliative care services to be a useful or worthwhile experience. For me, advocating for patient referrals to specialist palliative care services is… 38. Not useful Very useful 39. Not worthwhile at all Very worthwhile


Strongly Disagree



Somewhat agree


40. If I advocate for referrals to specialist palliative care services, based on patient needs, my actions will be effective.

1

2

3

4

5

6

7

41. If I advocate for patient referrals to specialist palliative care services, patients will appreciate this.

1

2

3

4

5

6

7

42. If I advocate for patient referrals to specialist palliative care services, this will strengthen collaborations within the healthcare team.

1

2

3

4

5

6

7

Appendices 201

Strongly Disagree



Somewhat agree


43. If I advocate for patient referrals to specialist palliative care services, I will feel like I am making a difference.

1

2

3

4

5

6

7

44. If I advocate for patient referrals to specialist palliative care services, it will reduce patient distress.

1

2

3

4

5

6

7

45. When I advocate for patient referrals to specialist palliative care services, I get recognition from colleagues who are important to me.

1

2

3

4

5

6

7

46. When I advocate for patient referrals to specialist palliative care services, I get recognition from my patients.

1

2

3

4

5

6

7

47. I intend to advocate for patient referrals to specialist palliative care services, even if I know the treating doctor does not have a good relationship with specialist palliative care services.

1

2

3

4

5

6

7

48. I intend to advocate for patient referrals to specialist palliative care services, even if patients wish to continue active cancer treatment.

1

2

3

4

5

6

7

202 Appendices

Please select one category for each statement below. Please indicate your level of agreement with the following statements: Never Seldom Sometimes Regularly Often Almost

AlwaysAlways

49. Generally, how often are other nursing tasks a higher priority than facilitating patient referrals to specialist palliative care services?

1

2

3

4

5

6

7

50. Generally, how often are other nursing tasks more urgent than facilitating patient referrals to specialist palliative care services?

1

2

3

4

5

6

7


Strongly Disagree



Somewhat agree


51. The evidence about the benefits of providing specialist palliative care services to patients with advanced cancer is very strong.

1

2

3

4

5

6

7

52. Advocating for patient referrals to specialist palliative care services adds value to patient care.

1

2

3

4

5

6

7

53. Advocating for patient referrals to specialist palliative care services costs little time to provide.

1

2

3

4

5

6

7

54. Advocating for patient referrals to specialist palliative care services is part of my daily practice.

1

2

3

4

5

6

7

Appendices 203

Strongly Disagree



Somewhat agree


55. Advocating for patient referrals to specialist palliative care services is simple.

1

2

3

4

5

6

7

56. Health service authorities provide clear guidelines and training about how to advocate patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

57. There are sufficient nursing staff to allow nurses to advocate for patient referrals to specialist palliative care services

1

2

3

4

5

6

7

58. The in-patient setting supports interventions such as patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

59. In the organisation I work, all the necessary resources are available to provide specialist palliative care services where needed.

1

2

3

4

5

6

7

60. I can count on support from the management of the organisation I work in when things get tough trying to advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

61. In the organisation I work in, supportive working relationships exist between cancer care services and specialist palliative care services.

1

2

3

4

5

6

7

204 Appendices

Strongly Disagree



Somewhat agree


62. In the organisation I work in, supportive working relationships exist between cancer nurses and specialist palliative care services.

1

2

3

4

5

6

7

63. In the organisation I work in, there is sufficient patient access to specialist palliative care services.

1

2

3

4

5

6

7

64. In my workplace, specialist palliative care services accept patients receiving curative cancer treatment.

1

2

3

4

5

6

7

65. In my workplace, patients with complex care needs are routinely referred to specialist palliative care services.

1

2

3

4

5

6

7

66. My workplace provides healthcare professionals with the training to advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

67. My workplace performs routine needs assessments for patients with advanced cancer.

1

2

3

4

5

6

7

68. My workplace provides decision-making tools to assist healthcare professionals decide when to refer patients to specialist palliative care services.

1

2

3

4

5

6

7

69. My workplace routinely provides information about specialist palliative care services to patients with advanced cancer.

1

2

3

4

5

6

7

Appendices 205

Strongly Disagree



Somewhat agree


70. Most people who are important to me think that I should advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

71. Healthcare professionals with whom I provide patient care think I should advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

72. Nursing colleagues with whom I provide patient care advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

73. Other healthcare professionals with whom I provide patient care advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

74. I can count on support from healthcare professionals with whom I provide patient care when things get tough advocating patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

75. Healthcare professionals with whom I provide patient care are willing to listen to my problems with advocating for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

76. Healthcare professionals with whom I provide patient care are helpful with advocating for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

206 Appendices

Please select one category for each statement below. For each statement below, please indicate how often you feel this way:

Never Seldom Some-times

Regularly Often Almost Always

Always

77. When I work with other members of the healthcare team to advocate for patient referrals to specialist palliative care services, I feel optimistic that we will achieve this outcome.

1 2 3 4 5 6 7

78. When I advocate for patient referrals to specialist palliative care services, I feel useful to patients.

1 2 3 4 5 6 7

79. I feel calm when I think about advocating for patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

80. I feel distressed when I think about advocating for patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

81. I feel concerned referrals to specialist palliative care services will jeopardise my relationship with patients.

1 2 3 4 5 6 7

82. I feel frustrated when trying to advocating for patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

83. Emotional fatigue prevents me from advocating for more patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

84. Burnout prevents me from advocating for more patient referrals to specialist palliative care services.

1 2 3 4 5 6 7

Appendices 207


Strongly Disagree



Somewhat agree


85. I have a clear plan of how I will advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

86. I have a clear plan when I will advocate for patient referrals to specialist palliative care services.

1

2

3

4

5

6

7

87. I have a clear plan with regards to advocating for patient referrals to specialist palliative care services, when patients are not familiar with the service.

1

2

3

4

5

6

7

208 Appendices

Strongly Disagree



Somewhat agree


88. I have a clear plan with regards to advocating for patient referrals to specialist palliative care services when there is little time.

1

2

3

4

5

6

7

89. I have a clear plan with regard to advocating for patient referrals to specialist palliative care services, when other healthcare professionals with whom I provide patient care do not do this.

1

2

3

4

5

6

7

90. Advocating for patient referrals to specialist palliative care services is something I do automatically

1

2

3

4

5

6

7

91. Advocating for patient referrals to specialist palliative care services is something I do without having to consciously remember.

1

2

3

4

5

6

7

92. Advocating for patient referrals to specialist palliative care services is something I start doing before I realise I am doing it.

1

2

3

4

5

6

7

93. Do you have any other comments to make about the cancer nursing role in the referral decision-making process for specialist palliative care services?

Free text box provided.

Thank you for taking the time to complete this questionnaire

Appendices 209

QUT HREC approval – cross-sectional study

Appendices 211

QUT HREC approval of amendments – cross-sectional study

From: Human Ethics Advisory Team Sent: Monday, December 19, 2016 5:54 PM To: Patsy Yates; Sarah Northfield Cc: Deborah Smith Subject: Ethics variation ‐ approved ‐ 1600001019 Dear Prof Patsy Yates and Sarah Northfield Approval #: 1600001019 End Date: 8/11/2018 Project Title: Identifying factors that influence referrals to specialist palliative care services for patients with cancer in the in-patient setting This email is to advise that your variation has been considered by the Chair, University Human Research Ethics Committee. This HREC is constituted and operates in accordance with the National Health and Medical Research Council's (NHMRC) National Statement on Ethical Conduct in Human Research (2007). Approval has been provided for: < changes to survey (informed by pilot) Documents approved: Low risk application V2 14/12/16 PICF survey V2 14/12/16 survey V2 14/12/16 Research plan V2 14/12/16 PLEASE NOTE: RESEARCH SAFETY -- Ensure any health and safety risks relating to this variation have been appropriately considered, particularly if your project required a Health and Safety Risk Assessment. CONFLICTS OF INTEREST -- If this variation will introduce any additional perceived or actual conflicts of interest please advise the Research Ethics Advisory Team by return email. Please don't hesitate to contact us if you have any questions. Regards Janette Lamb / Debbie Smith on behalf of Chair UHREC Office of Research Ethics & Integrity Level 4 | 88 Musk Avenue | Kelvin Grove +61 7 3138 5123 [email protected] http://www.orei.qut.edu.au

Appendices 213

HSANZ approval to distribute survey to Australian nursing

membership

From: Lexy Harris HSANZ <[email protected]> Date: 15 February 2016 at 10:22 Subject: RE: Request to survey the HSANZ Nurses' Group for research purposes To: Sarah Northfield <[email protected]>

Dear Sarah

Your request to survey the HSANZ Nurses’ Group has been approved. Please send the information you wish to distribute in due course.

Regards

Lexy

Alexis Harris

Executive Officer

Haematology Society of Australia and New Zealand

145 Macquarie Street

Sydney NSW 2000

PH +61 (0) 2 9256 5456 l Fax +61 (0) 2 9252 0294

[email protected] www.hsanz.org.au The information contained within this e‐mail is intended for the named recipients only and it may contain confidential and/or privileged information. If you have received this message in error, you must not copy, duplicate, forward, print or otherwise distribute any information

contained herein, but must ensure that this e‐mail is permanently deleted and advise the sender immediately.

Appendices 215

CNSA approval to distribute survey to membership

From: "Cameron, Kate (Health)" <[email protected]> Date: Sunday, 20 November 2016 at 4:43 pm To: Amy Ribbons <[email protected]>, "'[email protected]'" <[email protected]> Subject: RE: ATTENTION CHAIR OF CNSA RESEARCH COMMITTEE: Request to review research proposal for survey of CNSA Membership

Hi Amy and Sarah

Sarah thank you for your comprehensive survey application, I’m happy to say that your request has been approved by the Research Committee and we will be able to turnaround approval of any adjustments needed when you advise us of this.

Please email me directly with the adjustments request (if it’s needed ).

Cheers

Kate

Appendices 217

Scatterplot for relationship between years of experience as SPCS nurse and analysing behaviours

Figure A2. Scatterplot for relationship between years of experience as SPCS nurse and analysing behaviours

Appendices 219

Scatterplot for relationship between years of experience as SPCS nurse and counselling behaviours

Figure A3. Scatterplot for relationship between years of experience as SPCS nurse and counselling behaviours

Appendices 221

Scatterplot for relationship between years of experience as SPCS nurse and responding behaviours

Figure A4. Scatterplot for relationship between years of experience as SPCS nurse and responding behaviours

Appendices 223

Table M1

Multiple correlation matrix for all regression models (n = 110)




Completion of PC specific education

Metropolitan workplace location

Years of experience as cancer nurse

Total motivations score

Total opportunities score

Total capabilities score

Scope to directly refer to SPCS

Pearson Correlation


1.00 - - 0.27 -0.23 0.25 0.49 0.34 0.46 0.29


- 1.00 - 0.42 -0.22 0.18 0.52 0.38 0.49 0.36


- - 1.00 0.35 -0.36 0.28 0.53 0.43 0.55 0.56


0.27 0.42 0.35 1.00 -0.08 0.16 0.40 0.26 0.29 0.20


-0.23 -0.22 -0.36 -0.08 1.00 -0.15 -0.19 -0.28 -0.31 -0.32


0.25 0.18 0.28 0.16 -0.15 1.00 0.22 0.12 0.36 0.22


0.49 0.52 0.53 0.40 -0.19 0.22 1.00 0.68 0.80 0.23


0.34 0.38 0.43 0.26 -0.28 0.12 0.68 1.00 0.66 0.20


0.46 0.49 0.55 0.29 -0.31 0.36 0.80 0.66 1.00 0.30


0.29 0.36 0.56 0.20 -0.32 0.22 0.23 0.20 0.30 1.00

224 Appendices











Sig. (1-tailed)


- - - 0.002** 0.007** 0.004** 0.000** 0.000** 0.000** 0.001**


- - - 0.000** 0.01** 0.03* 0.000** 0.000** 0.000** 0.000**


- - - 0.000** 0.000** 0.002** 0.000** 0.000** 0.000** 0.000**


0.002** 0.000** 0.000** - 0.21 0.05* 0.000** 0.003** 0.001** 0.02*


0.007** 0.01* 0.000** 0.21 - 0.06 0.03* 0.002** 0.001** 0.000**


0.004** 0.03* 0.002** 0.05* 0.06 - 0.01* 0.11 0.000** 0.01**


0.000** 0.000** 0.000** 0.000** 0.03* 0.01** - 0.000** 0.000** 0.007**


0.000** 0.000** 0.000** 0.003** 0.002** 0.11 0.000** - 0.000** 0.02*


0.000** 0.000** 0.000** 0.001** 0.001** 0.000** 0.000** 0.000** - 0.001**


0.001** 0.000** 0.000** 0.02* 0.000** 0.10 0.007** 0.02* 0.001** -

Note. *p < 0.05; ** p < 0.01, PC = palliative care, SPCS = Specialist Palliative Care Services, Sig. = significance.

Appendices 225

Scatterplot for frequency of analysing behaviours model

Figure A5. Scatterplot for frequency of analysing behaviours model

Appendices 227

Scatterplot for frequency of counselling behaviours model

Figure A6. Scatterplot for frequency of counselling behaviours model

Appendices 229

Scatterplot for frequency of responding behaviours model

Figure A7 Scatterplot for frequency of responding behaviours model

Appendices 231

Table Q1

Sequential backward stepwise regression models for analysing behaviours (n = 110)

Analysing behaviours model Variable Β B 95% CI SEB P-value VIF

Model 1

Constant -0.72 [-5.82, 4.38] 2.57 0.78 Completion of palliative care specific education 0.06 0.54 [-1.09, 2.17] 0.82 0.52 1.23 Metropolitan workplace location -0.94 -0.60 [-1.75, 0.55] 0.58 0.31 1.22 Years of experience as cancer nurse 0.10 0.03 [-0.03, 0.09] 0.03 0.26 1.23 Total motivations score 0.38 0.06 [0.12, 0.11] 0.03 0.02* 3.50 Total opportunities score -0.30 -0.00 [-0.04, 0.03] 0.02 0.80 2.09 Total capabilities score 0.06 0.01 [-0.03, 0.05] 0.02 0.72 3.61 Scope to directly refer to SPCS 0.12 0.75 [-0.34, 1.83] 0.55 0.17 1.21 R2 0.302 Adjusted R2 0.254 F 6.30**

Model 2

Constant -0.72 [-5.80, 4.36] 2.56 0.78 Completion of palliative care specific education 0.06 0.53 [-1.09, 2.16] 0.82 0.52 1.23 Metropolitan workplace location -0.09 -.058 [-1.71, 0.56] 0.57 0.32 1.19 Years of experience as cancer nurse 0.11 0.04 [-0.02, 0.09] 0.03 0.24 1.20 Total motivations score 0.37 0.06 [0.01, 0.11] 0.02 0.02* 3.16 Total capabilities score 0.05 0.01 [-0.03, 0.05] 0.02 0.76 3.36 Scope to directly refer to SPCS 0.13 0.75 [-0.33, 1.83] 0.54 0.17 1.21 R2 0.301 Adjusted R2 0.261 F 7.40**

232 Appendices

Analysing behaviours model Variable Β B 95% CI SEB P-value VIF

Model 3

Constant -0.83 [-5.84, 4.17] 2.52 0.74 Completion of palliative care specific education 0.06 0.51 [-1.10, 2.11] 0.81 0.53 1.21 Metropolitan workplace location -0.10 -0.61 [-1.71, 0.49] 0.56 0.27 1.14 Years of experience as cancer nurse 0.12 0.04 [-0.02, 0.09] 0.03 0.18 1.09 Total motivations score 0.40 0.07 [0.04, 0.10] 0.02 0.00** 1.27 Scope to directly refer to SPCS 0.13 0.76 [-0.31, 1.83] 0.54 0.16 1.20 R2 0.30 Adjusted R2 0.27 F 8.94**

Model 4

Constant -1.03 [-5.98, 3.92] 2.50 0.68 Metropolitan workplace location -0.09 -0.60 [-1.70, 0.50] 0.55 0.28 1.14 Years of experience as cancer nurse 0.12 0.04 [-0.02, 0.09] 0.03 0.17 1.09 Total motivations score 0.42 0.07 [0.04, 0.1] 0.01 0.00** 1.10 Scope to directly refer to SPCS 0.13 0.80 [-0.26, 1.86] 0.53 0.14 1.18 R2 0.30 Adjusted R2 0.27 F 11.14**

Model 5

Constant -1.89

[-6.59, 2.80]

2.37 0.43

Years of experience as cancer nurse 0.12 0.04

[-0.02, 0.10]

0.03 0.15 1.08

Total motivations score 0.43 0.07 [0.04, 0.10] 0.01 0.000** 1.09 Scope to directly refer to SPCS

0.16 0.96 [-0.06, 1.98]

0.51 0.06 1.09

R2 0.29 Adjusted R2 0.27 F 14.44**

Model 6

Constant -2.05 [-6.76, 2.66] 2.38 0.39 Total motivations score 0.45 0.08 [0.05, 0.10] 0.01 0.000** Scope to directly refer to SPCS 0.18 1.09 [0.08, 2.10] 0.51 0.03* R2 0.276 Adjusted R2 0.262 F 20.39**

Note. *p < 0.05; ** p < 0.01 B = unstandardized regression coefficient; SEB = standard error of the coefficient; β = standardised coefficient; CI = confidence interval.

Appendices 233

Table R1

Sequential backward stepwise regression models for counselling behaviours (n = 110)


Model 1

Constant 0.44 [-5.12, 6.00] 2.80 0.88 Completion of palliative care specific education 0.24 2.47 [0.70, 4.25] 0.90 0.007** Metropolitan workplace location -0.05 -0.39 [-1.65, 0.86] 0.63 0.54 Years of experience as cancer nurse -0.01 -0.01 [-0.07, 0.06] 0.03 0.88 Total motivations score 0.27 0.05 [-0.00, 0.11] 0.03 0.07 Total opportunities score -0.02 -0.00 [-0.04, 0.03] 0.02 0.89 Total capabilities score 0.15 0.02 [-0.02, 0.07] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.33 [0.15, 2.50] 0.59 0.03* R2 0.381Adjusted R2 0.339F 8.98**

Model 2

Constant 0.44 [-5.09, 5.97] 2.79 0.88 Completion of palliative care specific education 0.24 2.47 [0.71, 4.24] 0.89 0.007** Metropolitan workplace location -0.05 -0.38 [-1.61, 0.85] 0.62 0.54 Years of experience as cancer nurse -0.01 -0.00 [-0.07, 0.06] 0.03 0.89 Total motivations score 0.26 0.05 [-0.00, 0.10] 0.03 0.06 Total capabilities score 0.14 0.02 [-0.02, 0.06] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.33 [0.15, 2.50] 0.59 0.03* R2 0.381Adjusted R2 0.345F 10.58**

Model 3

Constant 0.43 [-5.07, 5.93] 0.28 0.88 Completion of palliative care specific education 0.24 2.46 [0.71, 4.21] 0.88 0.006** Metropolitan workplace location -0.05 -0.38 [-1.61, 0.85] 0.62 0.54 Total motivations score 0.26 0.05 [-0.00, 0.10] 0.03 0.06 Total capabilities score 0.14 0.02 [0.06, 0.49] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.32 [2.48, 0.36] 0.59 0.03* R2 0.381Adjusted R2 0.351F 12.81**

234 Appendices



Model 4

Constant -0.05 [-5.31, 5.22] 2.66 0.99 Completion of palliative care specific education 0.24 2.45 [0.71, 4.20] 0.88 0.006** Total motivations score 0.25 0.05 [-0.00, 0.10] 0.03 0.06 Total capabilities score 0.15 0.02 [-0.02, 0.06] 0.02 0.24 Scope to directly refer to SPCS 0.20 1.41 [0.29, 2.53] 0.56 0.01* R2 0.379Adjusted R2 0.355F 16.02**

Model 5

Constant -0.73 [-5.88, 4.41] 2.60 0.78 Completion of palliative care specific education 0.23 2.36 [0.62, 4.11] 0.88 0.008** Total motivations score 0.38 0.72 [0.40, 0.11] 0.02 0.000** Scope to directly refer to SPCS 0.22 1.54 [0.44, 2.64] 0.55 0.007** R2 0.371Adjusted R2 0.353F 20.81**

Appendices 235

Table S1

Sequential backward stepwise regression models for responding behaviours (n = 110)


Model 1

Constant -2.68 [-5.34, 0.01] 1.36 0.05 Completion of palliative care specific education 0.11 0.65 [-0.21, 1.52] 0.44 0.14 Metropolitan workplace location -.13 -0.51 [-1.12, 0.10] 0.31 0.10 Years of experience as cancer nurse 0.06 0.01 [-0.02, 0.04] 0.02 0.45 Total motivations score 0.23 0.02 [-0.00, 0.05] 0.01 0.08 Total opportunities score 0.05 0.00 [-0.01, 0.02] 0.01 0.65 Total capabilities score 0.13 0.01 [0.01, 0.03] 0.01 0.32 Scope to directly refer to SPCS 0.38 1.48 [0.90, 2.05] 0.29 0.000** R2 0.53Adjusted R2 0.49F 16.17**

Model 2

Constant -2.69 [-5.38, 0.01] 1.36 0.05 Completion of palliative care specific education 0.11 0.66 [-0.20, 1.52] 0.43 0.13 Metropolitan workplace location -0.13 -0.53 [-1.13, 0.07] 0.30 0.08 Years of experience as cancer nurse 0.05 0.01 [-0.02, 0.04] 0.02 0.48 Total motivations score 0.25 0.03 [0.00, 0.05] 0.01 0.04* Total capabilities score 0.14 0.01 [-0.01, 0.03] 0.01 0.25 Scope to directly refer to SPCS 0.38 1.47 [0.90, 2.04] 0.29 0.000** R2 0.525Adjusted R2 0.497F 18.98**

Model 3

Constant -2.66 [-5.34, 0.03] 1.35 0.05 Completion of palliative care specific education 0.12 0.68 [-0.17, 1.54] 0.43 0.12 Metropolitan workplace location -0.13 -0.53 [-1.13, 0.07] 0.30 0.08 Total motivations score 0.23 0.03 [0.00, 0.05] 0.01 0.05 Total capabilities score 0.17 0.01 [-0.01, 0.03] 0.01 0.15 Scope to directly refer to SPCS 0.39 1.50 [0.93, 2.06] 0.29 0.000** R2 0.523Adjusted R2 0.500F 22.78**

236 Appendices



Model 4

Constant -2.93 [-5.60, -0.27] 1.35 0.03 Completion of palliative care specific education 0.11 0.63 [-0.22, 1.49] 0.43 0.15 Metropolitan workplace location -0.16 -0.63 [-1.22, -0.05] 0.30 0.04* Total motivations score 0.37 0.04 [0.02, 0.06] 0.01 0.000** Scope to directly refer to SPCS 0.40 1.55 [0.99, 2.11] 0.28 0.000** R2 0.513Adjusted R2 0.495F 27.68**

Model 5

Constant -3.18 [-5.84, -0.52] 1.34 0.02* Metropolitan workplace location -0.15 -0.62 [-1.21, -0.03] 0.30 0.04* Total motivations score 0.41 0.04 [0.03, 0.06] 0.01 0.000** Scope to directly refer to SPCS 0.42 1.60 [1.04, 2.16] 0.28 0.000** R2 0.503Adjusted R2 0.489F 35.80**