Participatory Action Research: Information Needs of Children whose Parent has Cancer

Suzanie Adina MAT SAAT Part of a PhD thesis 22 September 2014

This PhD thesis at Loughborough University explores the experiences of children whose parent has cancer and their informa=on needs and behaviour to cope with the challenges they faced as dependent children and care-‐givers.

Informa=on Needs of Children whose Parent has Cancer

A Par=cipatory

Ac=on Research

PAR

To demonstrate Par=cipatory Ac=on Research (PAR) used to explore, collect and AIM

analyse data to understand children’s informa=on experience including their percep=on of cancer and informa=on culture; informa=on needs, informa=on seeking behaviour, barriers and enablers.

The study was conducted based on an extensive literature review and the experiences of ten Malay families; ten breast cancer pa=ents and 22 dependent children.

METHOD

WHAT’S NEW Use of PAR for health and informa=on science research within a Malay culture seHng, showcasing its effec=veness in collec=ng rich qualita=ve data via par=cipant engagement of cancer pa=ents and their children.

PREMISE

In 2007, it was reported that there were 18,219 new adult cancer cases in Malaysia (Omar and Ibrahim, 2011, p.4-‐29). About 45,547 children were affected by their parents’ diagnosis. 18,219 new adult cases

45,547 children affected

PREMISE

Cancer diagnosis creates mul=ple problems for affected families, including major changes in living paWerns, roles and rela=onships (Mat Saat, G. 2012; Somasundaram, 2004; ScoW et. al. 2003b). “If being informed helps people to reduce uncertain=es about their health care, why do people seem not to want it and why do they prefer to obtain it from non-‐ins=tu=onal or non-‐professional sources?” (PeHgrew, 1999)

PREMISE

“No study to date has examined the =ming, nature, and extent of communica=on between parents with cancer and their children or studied why parents do or do not talk to their children about such difficult and important issues or inquired about what help parents have received or might have liked.” (Barnes et. al. 2000) The affects of cancer to children for the Malay ethnic group were not previously documented and the burden of caregiving and the consequences of a lack of informa=on were greater than an=cipated (Mat Saat, A.,2010; Somasundaram, 2004; ScoW et. al. 2003b).

THEORTICAL SOLUTION: Knowing informa=on preferences may help in tailoring informa=on and in the amount of informa=on and specific needs (Baker and PeHgrew, 1999). “People are beWer able to accept and act on informa=on when presented in a culturally acceptable interven=on method” (Hodge, Fredericks and Rodriguez, 1998). However, “clinicians elicit fewer than half of pa=ents’ concerns and consistently fail to discuss pa=ents’ values, goals of care, and preferences with regard to treatment” (Morrison and Meier, 2004).

PREMISE

THEREFORE: Develop a more par=cipa=ve framework for understanding and facilita=ng children’s informa=on needs. Par=cipa=ve Ac=on Research (PAR) is useful to assess, understand and develop solu=ons that can result in informa=on that is more complete, rich and as accurate as possible in health-‐related issues (Chevalier and Buckles, 2013; Read, 2012; Cochran et al., 2008; Erick et al., 2008; Viswanathan et al., 2004; Chiu and Wistow, 2002; Waterman et al., 2001; Green et al., 1995 and, Kemmis and McTaggart, 1988).

PREMISE

PAR Methodology Framework Par=cipa=ve Ac=on Research to inves=gate the Informa=on Needs of Children whose Parent has Cancer

STAGE ONE Preliminary Par=cipant Selec=on Criteria: i.  Cancer pa=ents who

are parents ii.  Dependent children

of cancer pa=ents aged between 5-‐18 years old.

Tools: Inquiry to par=cipate form (InqE-‐v.04 and InqBM-‐v.02). Results: 10 families actually par=cipated.

1 STAGE TWO Session One Introduce research aims and objec=ves, research process, ground rules & par=cipatory mechanism.

Tools: i.  Scripted introduc=on

to researcher ii.  ‘Par=cipant

Informa=on Sheet’ iii.  ‘Par=cipa=on

Consent’ form iv.  ‘Statement of

Confiden=ality’ form Results: 2 contact hours with 32 people.

2 STAGE THREE Session Two Inves=gate experience and informa=on needs; knowledge and experience of “cancer”, informa=on needs, seeking behaviour, preference and problems Tools: Self report via illustra=on, wriWen account, narra=ves and a 15-‐item ques=onnaire. Results: 2 contact hours with 32 people.

3

Par=cipa=ve Ac=on Research (PAR) Overview

(Kemmis and McTaggart, 1988)

RESULTS

405 forms distributed 205 respondents

72 families

30 families

22 families

10 families

A parent with children between 5 – 18 years old

Had informed their children about cancer diagnosis

Willing to par=cipate Willing for their children to par=cipate

Willing to aWend sessions

Can aWend sessions

Actually aWended sessions

STAGE ONE Preliminary Par=cipant Selec=on

10 Female Breast Cancer Pa=ents 22 male and female children

STAGE TWO

Session One x 2-‐hours

STAGE THREE Session Two x 2-‐hours

STAGE FOUR

Session Three x 2-‐hours

STAGE FIVE Session Four x 2-‐hours

STAGE SIX

Session Five x 2-‐hours

10 families

100 contact hours with 32 people

PAR ac=vi=es

STAGE FOUR Session Three: Assimilate informa=on needs: Compare and analyse results from Session Two to develop common themes and/or issues and priori=sing needs. Tools: Par=cipa=ve discussions and priority lists Results: 2 contact hours with 32 people.

4 STAGE FIVE Session Four: Iden=fy key informa=on needs: Consensus agreement in key informa=on needs Tools: Par=cipa=ve discussions, priority lists and consensus vote. Results: 2 contact hours with 32 people. 58 issues raised.

5 STAGE SIX Session Five: Assimilate possible solu=ons: Compare and analyse results from Session Four to find out par=cipants’ strategies in resolving key informa=on needs. Tools: Par=cipa=ve discussions, strategy list and consensus vote. Results: 2 contact hours with 32 people.

6

Par=cipa=ve Ac=on Research (PAR) Overview (Kemmis and McTaggart,

1988)


RESULTS

Cancer is dangerous and can be deadly

Requires specialist doctors, complex equipment and special ward

Cancer treatment involves chemotherapy, radiotherapy and immunotherapy

Cancer develops from uncontrolled cell growth or muta=on

Requires vigilant care and frequent medical check-‐up

Rest as a precursor to geHng beWer

Tamoxifin causes early menopause Mastectomy causes pain Cancer damages cells

Cancer can spread and damage other parts of the body (metastases)

Chemotherapy causes nausea, vomi=ng and hair loss

Effects of frequent vomi=ng

Surgery; mastectomy or lumpectomy and/or other invasive ac=on to save life

Parent’s bodily aches and pains

Effects of bodily aches and pains

STAGE FIVE Session Four: 58 Issues Raised and/or Discussed

RESULTS


Effects of hair loss Lifestyle Nega=ve behaviors

Sibling Cancer preven=on

Effects of early menopause

AWack Empathy Housework Health awareness

Spiritual state Test from God Increase in love

Distribu=on of chores

Empathy

Emo=onal state Nega=ve feelings Posi=ve behaviors

Family cohesiveness

Increase in love

History and gene=c predisposi=on

Nega=ve behaviors

Parent with cancer

Types of food Posi=ve behaviors

Unhealthy habits Empathy Health parent

Prepara=on of food

Parent with cancer

Polluted environment

Nega=ve feelings Self

Exercise Health parent

Self Sibling Housework Distribu=on of chores

Family cohesiveness

RESULTS


Types of food

God’s role

Wordiness as deterrent Type of informa=on

Prepara=on of food

Parent as informa=on provider

Language barrier Co-‐developed solu=on to iden=fied problems

Exercise Doctor as informa=on provider

AWrac=veness of informa=on

Accessibility of solu=ons

Cancer preven=on

Other sources of informa=on

Handyness of informa=on

Format of solu=ons

Health awareness

Availability and willingness of informa=on provider to share informa=on

Self-‐reported key informa=on needs

Prayer

Access to the Internet, cancer resources center and cancer informa=on

Percep=on of cancer and self-‐report of experience

STAGE EIGHT Report: Report findings. Findings: 95 Codes 20 themes, 13 organising themes and 6 global themes. Results: •  Consequences of children’s understanding

or lack of understanding •  List Of Tasks For Children Caregivers •  Par=cipant’s Issues: Iden=fica=on of roles of

informa=on, informa=on seeking behaviour, informa=on needs, preferred source of informa=on

•  Par=ciapnt’s Suggested Solu=ons: •  Children’s Reac=ve Informa=on Seeking

Behaviour -‐ An Integrated Model

8

Par=cipa=ve Ac=on Research (PAR) Overview (Kemmis and McTaggart,

1988)

STAGE SEVEN Synthesizing par=cipa=ve contribu=ons: Synthesize data to answer research aims and objec=ves towards development of thesis and recommenda=ons for informa=on provision Tools: Coding and Thema=c analysis.

7


RESULTS STAGE SEVEN Coding and Thema=c analysis

STAGE EIGHT •  Consequences of children’s understanding or lack of understanding

•  List Of Tasks For Children Caregivers •  Par=cipant’s Issues: Iden=fica=on of roles of informa=on, informa=on seeking behaviour, informa=on needs, preferred source of informa=on

•  Par=cipant’s Suggested Solu=ons •  Children’s Reac=ve Informa=on Seeking Behaviour -‐ An Integrated Model

Access to informa=on Alien thing Alone Anger Assimila=on of

informa=on A\tude to informa=on

Automa=c assistance

Bald Being Ac=ve Book Cancer in the family Cells Chemotherapy Chores

Cleaning Comic Cooking Damage Death Depressed Disgust

Disheartened Divorce Exercise Experience Faith Fear Food

Fruits Frustrated God’s test Good deeds Hair loss Hate Health knowledge

Hospital stay Illustra=on Immediacy Informa=on culture

Informa=on problem Ironing Language

Less fat Less preserva=ves Less salt Love Massaging Menopause Menses

Monitoring

health Nega=ve emo=on Non fast food Non fried food Other health

prac=ces Pain Pallia=ve care

Pity Pollu=on Polygamy Poor school performance Prayer Prior knowledge Reac=ons

Reality drama Resentment Rest Role of doctor Role of father Role of mother Role of prayer

Role of sibling Role of to self Sadness Second-‐hand smoke Self-‐check Separa=on

anxiety Sources of informa=on

Spread S=ll love parent Stress Suggested solu=on Surgery Thanks to God Treatment

process

Type of informa=on Uncaring Uncommunica=ve Uncoopera=ve Vegetables Video Vomi=ng

What faith can

do Willpower Wordiness Worry

STAGE SEVEN List of 95 Codes (in alphabe=cal order)

STAGE SEVEN Thema=c Analysis: Development of global themes

THEMES ORGANISING THEMES GLOBAL THEMES

1. A type of possibly deadly illness, sickness or disease Medical Inference 1. Children made sense of cancer through their experience, observa=ons and beliefs. 2. Requires hospitalisa=on, special medica=on and long

treatment process 3. Physical side effects of cancer and cancer treatment State of Parent Being Sick *4. Effects of side effects *5. Non physical side effects of cancer and cancer treatment 6. Medically proven cause Causes *7. Perceived cause

8. Nega=ve psychological impact Psychological impact to children

2. Lack of informa=on resulted in children not knowing and/or being unprepared for cancer’s impact on their lives. *9. Posi=ve psychological impact

10. Changes to roles of family members Changes to family dynamics 3. Cancer changed familial dynamics.

11. Familial responsibili=es Changes to family processes * 12. Problems in the family

13. Changes to diet Lifestyle changes 4. Cancer changed lifestyle.

* 14. Changes to health behaviour Changes to health prac=ces

* 15. Religious fervour Increased religious aWen=on

16. Types of informa=on provider Informa=on sources 5. Children had limited access to informa=on.

17. Problems in accessing informa=on Informa=on problems 6. Children reacted to a health-‐based situa=on or s=muli and required topic-‐based informa=on to make sense of their situa=on and to guide their adult-‐expected behaviour.

18. Relevancy and readability of informa=on

19. Types of informa=on needs Priori=sed informa=on needs

20. Viability of suggested solu=ons Suggested solu=ons

STAGE EIGHT Consequences of children’s understanding or lack of understanding

POSITIVE NEGATIVE A\tudes to informa=on sharing

Open and accessible informa=on Closed and inaccessible informa=on

Outcomes Posi=ve and indicates understanding of cancer

Nega=ve and indicates lack of understanding of cancer

Consequences: Children's reac=on to cancer and cancer treatment

•  Increase in love, pa=ence and empathy toward parent.

•  Increased understanding of the importance of the cancer care con=nuum.

•  Decrease in love, pa=ence and empathy toward parent.

•  Decreased understanding of the importance of the cancer care con=nuum.

Consequences: Children's reac=on to changes in familial dynamics

•  Understanding new roles and tasks. •  Increase in pa=ence and willingness towards burden of care.

•  Does not understand new roles and tasks.

•  Decrease in pa=ence and willingness towards burden of care.

Consequences: Children's reac=on to changes in lifestyle

•  Increase care, knowledge and adherence to changed diet and lifestyle changes.

•  Increased observance of religious prac=ces.

•  Resent and feel forced to adhere to changed diet and lifestyle changes.

•  No indica=on of nega=ve change towards religious prac=ces.

FINDINGS

LIST OF PARTICIPANT’S ISSUES RAISED AND/OR DISCUSSED

PARTICIPANTS’ ISSUES LANGUAGE PREFERANCE

WriWen: Bahasa Malaysia Verbal: Bahasa Malaysia

CANCER SPECIFIC INFORMATION Defini=on of Cancer Defini=on of Disease Types of Cancer Is cancer dangerous? Is cancer contagious? Cancer detec=on

Treatment process flow List of possible side effects of cancer treatment Cancer preven=on Why does cancer take a long =me to recover

from? Why does cheomothearpy cause vomiHng? Why does cheomothearpy cause hair loss

How to ask parents about cancer? How to tell children about cancer? How to tell children about diagnosis?

FORMAT

Interac=on with ill parent Interac=on with healthy parent Interac=on with aWending doctor Interac=on with other children in a similar

situa=on Interac=on with counselors at cancer centers Talks at school

Comic book with problem-‐solving seHng Reference book with many pictorial references Easy-‐to-‐read guide book

Drama=sed story of a family with cancer Drama=sed problem solving situa=on Reality television of coping with cancer

in the family Magazine ar=cle Newspaper ar=cle

CHILDREN’S CONCERNS

How to care for a cancer pa=ent List of possible ways to help parent with cancer List of possible changes to familial roles

How to take care of self How to take care of younger siblings How to talk to parents about the parents’ cancer experience?

Assurance of con=nua=on of care and love towards the child

How to talk to parents about what made the parent upset

How to talk to parents about what made the child upset

How children can show their care towards the ill parent Why are household chores unequal Why girls have to do more caregiving tasks

Why is father less helpful / less suppor=ve? How to approach ill parent when the ill parent looks bad/disgus=ng/not normal How to not be scolded oren

Why is ill parent emo=onal? How to make ill parent to be less emo=onal How to calm ill parent when ill parent is angry or upset

FINDINGS

LIST OF PARTICIPANT’S ISSUES RAISED AND/OR DISCUSSED

PARTICIPANTS’ SUGGESTED SOLUTIONS

LANGUAGE PREFERANCE

WriWen: Bahasa Malaysia Verbal: Bahasa Malaysia

TOPICS: CHILDREN’S CONCERNS

Easy to follow guide on how to care for a cancer pa=ent

Easy to follow guide on how children may help parent with cancer

Explain list of possible changes to familial roles

Easy to follow guide on how to take care of self

Easy to follow guide on how to take care of younger siblings

Easy to follow guide on how to talk to parents about the parents’ cancer

experience?

Easy to follow guide on how to get assurance of con=nua=on of care and

love towards the child

Guide for parents’ expecta=on of children’s’ abili=es as a caregiver

Guide for parents to be aware of children’s needs

TOPICS: CANCER SPECIFIC INFORMATION

Explain how is cancer dangerous Explain treatment process flow Explain why side effects happen

Explain why ill parent may get emo=onal

Explain how children can cope with side effects

INFORMATION MEDIUM

Interac=on with ill parent Interac=on with healthy parent Interac=on with aWending doctor

Interac=on with other children in a similar situa=on

Interac=on with counselors at cancer centers

Talks at school

Comic book with problem-‐solving seHng

Pictorial reference book with easy to understand explana=ons about cancer Easy-‐to-‐read guide book

LIST OF TASKS FOR CHILDREN CAREGIVERS

TASKS ELDEST FEMALE CHILD

OTHER FEMALE CHILDREN

MALE CHILDREN

A. Household chores Preparing food for the family ✓ ✓ Purchasing food for the family ✓ ✓ SeHng a meal for the family ✓ ✓ Clearing and cleaning up arer a meal ✓ ✓ Cleaning the house ✓ ✓ ✓ Laundry ✓ ✓ ✓ Minor house repairs ✓ Moving furniture to make way for wheel chair or providing support posts for parent to move inside the house

✓ ✓ ✓

B. Caregiver tasks Accompanying parent to the hospital or clinic ✓ ✓ ✓ Accompanying parent for a hospital stay ✓ Accompanying parent to sleep in a more comfortable area in the house

✓

Helping parent to change clothes ✓ Helping parent to move around in the house ✓ ✓ ✓ Feeding parent and monitoring nutri=onal intake ✓ Monitoring consump=on of medica=on ✓ Iden=fying health issue(s) and providing solu=on(s) ✓ Relieving bodily aches and pains ✓ ✓ ✓ Cleanliness of “sick” room ✓ Management of parent’s nausea ✓ ✓

LIST OF TASKS FOR CHILDREN CAREGIVERS

TASKS ELDEST FEMALE CHILD

OTHER FEMALE CHILDREN

MALE CHILDREN

Holding up parent and providing containers when parent was too ill to vomit in the bathroom

✓ ✓

Suppor=ng parent to go to the toilet ✓ ✓ Changing the bed ✓ Preparing clothes ✓ ✓ Collec=ng parent’s hair ✓ CuHng parent’s nails ✓ Being with the parent in free =me ✓ ✓ Listening to parent’s complaints ✓ ✓ Praying for the parent to get beWer ✓ ✓ ✓ Remembering or taking down notes on doctors’ instruc=on or advice

✓

Coordina=ng parental care among siblings ✓ Ensuring parent is presentable to receive visitors ✓ ✓ C. Other tasks Monitoring siblings’ homework ✓ Taking care of ill siblings ✓ Entertain and provide for guests ✓ Management of new familial diet ✓ Management of new lifestyle changes ✓ TOTAL NUMBER OF TASKS 35 17 9

STAGE EIGHT CHILDREN’S REACTIVE INFORMATION SEEKING

BEHAVIOUR -‐  AN INTEGRATED

MODEL

Explains the observed rela=onship between children par=cipants’ reac=on to a health situa=on and the

subsequent processes they undergo to resolve

their state of informa=on need.

CONCLUSIONS PAR was useful in obtaining rich data about 10 Malay cancer pa=ents and their 22 dependent children. PAR helped to iden=fy that: •  Cancer seemed to affect paren=ng abili=es.

•  Par=cipants’ challenging experiences seemed to convey that a lack of culturally relevant and age-‐appropriate informa=on and the shir in caregiving responsibili=es to dependent children necessitated a more assessable, suppor=ve and sensi=ve informa=on system.

CONCLUSIONS •  Children’s understanding of cancer seemed to be influenced

by their experiences and observa=ons, many of which resulted in misconcep=ons about cancer, its causes, treatment and preventa=ve measures.

•  It seemed that children par=cipant’s reac=on to a health situa=on triggered their informa=on behaviour.

•  Children seemed to have more dimensions of concern and their cancer experience highlighted the myriad challenges they faced.

CONCLUSIONS •  The burden of caregiving and the consequences of a lack of

informa=on were greater than an=cipated.

•  Children’s experiences iden=fied that a lack of children-‐centric informa=on about the affect of cancer to them and, parental expecta=ons in the face of illness necessitated a more assessable, aWrac=ve and sensi=ve informa=on system.

•  A synthesis of the data contributed to the development of a

“Children’s Reac=ve Informa=on Seeking Behaviour – An Integrated Model” was developed to explain the observed rela=onship between children par=cipants’ reac=on to a health situa=on and the subsequent processes they undergo to resolve their state of informa=on need.

Barnes et. al. 2000 Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A. and Stein, A. (2000) Qualita=ve Interview between parents and children about maternal breast cancer. BMJ. [Internet] 2000;321;479-‐482 Available from: <hWp//www.bmj.com > [Accessed 2 September 2005]. Baker and PeHgrew, 1999 Baker, L. M. and PeHgrew, K. E. (1999) Theories for prac==oners: Two frameworks for studying consumer health informa=on-‐seeking behaviour. Bulle'n of the Medical Library Associa'on. [Internet] October; 87(4), pp. 444-‐450. Available from: < hWp://www.pubmedcentral.nih.gov/piorender.fegu?arbid=226619&ac=on-‐stream&blobtype=pdf.> [Accessed 12 December 2004]. Chevalier and Buckles, 2013 Chevalier, J. M. and Buckles, D. J. (2013) Par'cipatory Ac'on Research: Theory and Methods for Engaged Inquiry. New York: NY: Routledge. Chiu and Wistow, 2002 Chiu, L.F. and Wistow, G. (2002) Improving Access to Cancer Informa'on for Doncaster Residents. [Internet]. Doncaster, Nuffield Ins=tute for Health. Available from: < hFp://www.nuffield.leeds.ac.uk/downloads/cancer_info.pdf > [Accessed 1 December 2004]. Cochran et al., 2008 Cochran PA, Marshall CA, Garcia-‐Downing C, Kendall E, Cook D, McCubbin L (2008) Indigenous ways of knowing: implica=ons for par=cipatory research and community. Am J Public Health 2008; 98(1): 22–7. Erick et al., 2008 Erick W, Mooney-‐Somers J, Akee A, Maher L. Resilience to blood borne and sexually transmiWed infec=ons: the development of a par=cipatory ac=on research project with young Aboriginal and Torres Strait Islander people in Townsville. Aboriginal and Islander Health Worker Journal 2008; 32(6): 5–8. Green et al., 1995 Green, L.W., George, M.A., Daniel, M., Frankish, C.J., Herbert, C.P., Bowie, W.R. and O’Neill, M. (1995) Study of Par=cipatory Research in Health Promo=on: Review and Recommenda=ons for the Development of Par=cipatory Research in Health Promo=on. OWowa: Royal Society of Canada. In Hughes, I. (2008). Ac=on research in healthcare. In P. Reason & H. Bradbury (Eds.), Handbook for Ac'on Research: Par'cipa've Inquiry and Prac'ce (pp. 381-‐393). London: Sage

REFERENCES

Hodge, Fredericks and Rodriguez, 1998 Hodge, F. S., Fredericks, L. & Rodriguez, B. (1998) American Indian women’s talking circle: A cervical cancer screening and preven=on project. Cancer. [Internet] 78(S7), pp. 1592-‐1597. Available from: < www3.interscience.wiley.com> [Accessed 7 May 2005]. Kemmis and McTaggart, 1988 emmis, S. and McTaggart, R. (Eds) (1988) The ac=on research planner (3rd ed.) Geelong, Victoria: Deakin University Press. Morrison and Meier, 2004 Morrison, R. S. and Meier, D. E. (2004) Pallia=ve Care. The New England Journal of Medicine. [Internet] The New England Journal of Medicine 2004, 350(25), pp. 2582-‐2590. Available from: <hWp:// hWp://content.nejm.org/> [Accessed 7 November 2004]. Omar and Ibrahim, 2011, p.4-‐29 Omar, Z. A. and Ibrahim, N. S (2011) Na=onal Cancer Registry Report 2007, Ministry of Health Malaysia 2011. Available from :< hWp://www.makna.org.my/PDF/MalaysiaCancerSta=s=cs2007.pdf> > [Accessed 20 July 2013] Mat Saat, A. 2010 Mat Saat, A. (2010). Interview with the author on 5 June 2010. [Discussion about cancer experience among Malay pa=ents]. Mat Saat, G. 2012 Mat Saat, G (2012). Interview with the author on 14 September 2012. [Discussion about psychological impact of cancer to adult pa=ents and their dependent children.] Read, 2012 Read, Clancy and Cur=n University (2012). Applying a par'cipatory ac'on research model to assess and address community health concerns among tribal communi'es in Gujarat, Western India: the poten'al and challenges of par'cipatory approaches. [Doctoral Thesis] [Internet] Centre for Interna=onal Health. Available from: <hWp://trove.nla.gov.au/work/175518870?selectedversion=NBD50509503. [Accessed 30 June 2013] Somasundaram, 2004 Somasundaram, S. (2004) Welcome Remarks. [Launch]. Launch of ‘A Parent’s Guide to Children with Cancer’. Kuala Lumpur

REFERENCES

ScoW et. al. 2003b ScoW, J. T., Prictor, M. J., Harmsen, M., Broom, A., Entwistle, Vv, Sowden, A. and WaW I. (2003b) Interven=ons for improving communica=on with children and adolescents about a family member's cancer. The Cochrane Database of Systema'c Reviews 2003, Issue 4. Art. No.: CD004511. DOI: 10.1002/14651858.CD004511. Viswanathan et al., 2004 Viswanathan, M., Ammerman, A., Eng, E., Gartlehner, G., Lohr, K.N., Griffith, D., et al. (2004a) Community based Par=cipatory Research: Assessing the Evidence. Evidence Report/Technology Assessment No. 99 (No. AHRQ Publica=on 04-‐E022-‐2). Rockville, MD: Agency for HealthcareResearch and Quality. In Hughes, I. (2008). Ac=on research in healthcare. In P. Reason & H. Bradbury (Eds.), Handbook for Ac'on Research: Par'cipa've Inquiry and Prac'ce (pp. 381-‐393). London: Sage. Waterman et al., 2001 Waterman, H., Tillen, D., Dickson, R. and de Koning, K. (2001) ‘Ac=on research: a systema=c review and guidance for assessment’, Health Technology Assessment, 5 (23): 1–166. In Hughes, I. (2008). Ac=on research in healthcare. In P. Reason & H. Bradbury (Eds.), Handbook for Ac'on Research: Par'cipa've Inquiry and Prac'ce (pp. 381-‐393). London: Sage.

REFERENCES

MAT SAAT, S. A. (2014) A Par=cipatory Ac=on Research: Informa=on Needs of Children whose Parent has Cancer [Doctoral Thesis] Loughborough University

This PhD thesis at Loughborough University explores the experiences of children whose parent has cancer and their informa=on needs and behaviour to cope with the challenges they faced as dependent children and care-‐givers.

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Informa=on Needs of Children whose Parent has Cancer

Documents

Participatory Action Research: Information Needs of Children whose Parent has Cancer