Taking responsibility: Preventing educational disadvantage ......Date Updated . Comments . 1.0 . May 2017 ; Released to client, Project Advisory Group and Critical Friends for comment

Taking Responsibility:

Preventing educational disadvantage forseriously sick kids experiencing school absence

Case Study Report

A paper prepared for the Australian GovernmentDepartment of Education and Training by theAustralian Research Alliance for Children andYouth (ARACY)

Australian Research Alliance for Children and Youth

About this document

Document details Title Taking Responsibility: Preventing

educational disadvantage for seriously sick kids experiencing school absence

Case Study Report

Description A report on a case study of collaborative practice in the health-education nexus, aimed at supporting students experiencing non-negligible school absence due to significant injury or illness in remaining engaged with their schooling.

Release Date 27 June 2017

Author Megan Watts

Version Control Version Date Updated Comments

1.0 May 2017 Released to client, Project Advisory Group and Critical Friends for comment

2.0 June 2017 Released for approval

2.1 March 2019 Final

Taking Responsibility: Case Study Report 3

©2019 ARACY ARACY owns copyright of all material in this report. You may reproduce this material in unaltered form only, (acknowledging the source) for your personal, non-commercial use or use within your organisation. Commercial use of material in this review is prohibited. Except as permitted above you must not copy, adapt, publish, distribute of commercialise any material contained in this review without ARACY’s permission. ISBN: to be confirmed Suggested citation: Australian Research Alliance for Children and Youth (ARACY). (2019). Taking responsibility: Preventing educational disadvantage for seriously sick kids experiencing school absence: Final Report. A report prepared for the Australian Government Department of Education and Training. Canberra: ARACY. Contact us If you have any queries about this review, please contact ARACY: Mail: GPO Box 2807, Canberra, ACT 2601 Email: [email protected] Website: www.aracy.org.au Phone: +61 2 6248 2400 @ARACYAustralia ABN 68 100 902 921

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http://www.aracy.org.au/

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Acknowledgements

ARACY acknowledges with gratitude the important work of MissingSchool in establishing a voice for the cohort of Australian students who experience absence from school due to serious illness or injury. Thanks to the work of MissingSchool there is now a national conversation about the policy and service reforms necessary to ensure these students remain connected to their learning and schooling.

This project builds on the findings of the 2015 report, School connection for seriously sick kids, which was commissioned and co-authored by MissingSchool.

ARACY also acknowledges the continued generous contribution of MissingSchool throughout the current project. MissingSchool have shared their Theory of Change, which informs the context and applications of systems architecture used in this project. The methodology to identify the structural gaps in current Australian policy and practice, through the Policy and Standards Hierarchy, was introduced by Megan Gilmour, Cofounder and Chair of MissingSchool.

ARACY thanks the many individuals and organisations who contributed to this work, whether through membership of the Project Advisory Group, as critical friends, or in response to requests for information.


This is a case study of collaboration in the health-education nexus

Collaboration is: “partnering with families to co-create an environment where they can access resources and social connections. We learn about their capacities, strengths, and initiative; innovate and test resources and tools that allow families to best use their assets and abilities to achieve economic and social mobility; and disseminate what we learn to shape markets, practices, policies, and beliefs to more effectively support families in moving their communities forward” (Gerena, 2016).


Contents Document details .................................................................................................................................. 2

Version control ....................................................................................... Error! Bookmark not defined.

Acknowledgements ............................................................................................................................... 4

Introduction ........................................................................................................................................... 8

Rationale ............................................................................................................................................ 9

The Case Study ............................................................................................................................... 10

Purpose ........................................................................................................................................ 10

The systems ................................................................................................................................ 10

The school.................................................................................................................................... 11

Mim’s network ............................................................................................................................. 11

Bina’s Network ............................................................................................................................ 13

Method ................................................................................................................................................. 15

Data Collection ................................................................................................................................ 15

Data analysis ....................................................................................................................................... 18

Inventory.......................................................................................................................................... 18

Focus groups ................................................................................................................................... 19

Collaboration ............................................................................................................................... 19

Reflections ....................................................................................................................................... 24

Quantitative Data ........................................................................................................................ 24

Qualitative data ........................................................................................................................... 26

Lead Worker Debrief ...................................................................................................................... 29

Challenges .................................................................................................................................... 29

The research questions .................................................................................................................. 30

The network objectives .................................................................................................................. 33

Mim’s network ............................................................................................................................. 33

Bina’s network ............................................................................................................................. 34


Discussion ............................................................................................................................................ 35

Inventory.......................................................................................................................................... 35

Focus groups ................................................................................................................................... 35

Reflections ....................................................................................................................................... 36

Co-design or lack thereof .......................................................................................................... 36

Lead Worker role ............................................................................................................................ 37

Collaboration and Privacy .............................................................................................................. 39

Findings ................................................................................................................................................ 39

Recommendations .............................................................................................................................. 42

Nothing about us without us ......................................................................................................... 42

Policy and standards hierarchy ..................................................................................................... 43

Collaboration across the health-education nexus ...................................................................... 44

Lead Workers .............................................................................................................................. 45

Conclusion ............................................................................................................................................ 45

Appendix One ...................................................................................................................................... 46

Summary of Policy and standards hierarchy mapping .............................................................. 46

References ........................................................................................................................................... 47


Introduction In the provision of support for students with significant illness or injury, there is regular cross over between health and education jurisdictions:

To meet every child at their point of educational need is the responsibility of both healthcare providers and education authorities working collaboratively to support each student and their family in a child- and family-centred way (Hopkins, 2016, p.214).

This point of cross over is the health-education nexus. Some examples of current provisions within the nexus include hospital based education and school based nursing staff. The health-education nexus is bi-directional and frequently challenging for individuals to negotiate. This level of challenge can create a situation in which rather than functioning as a shared area of communication and understanding, the nexus becomes a black hole – blocking communication, contributing to misunderstanding and frustration, and failing to get results for the students it should serve. In this situation, rather than a nexus, there is a health-education divide.

Taking Responsibility: Preventing educational disadvantage for seriously sick kids experiencing school absence (Taking Responsibility) was commissioned by the Australian Government in response to the 2015 report commissioned by MissingSchool1 - School connection for seriously sick kids – who are they, how do we know what works and whose job is it? That report is one of the most recent Australian works on school connection for students experiencing non-negligible absence from school due to serious illness or injury. There are a range of documents produced in Taking Responsibility, including a Review of Current Practice, a Good Practice Resource for teachers, and a Practicum Guide for pre-service teachers. This Case Study Report explores the methodology, data analysis and findings from a study of collaboration across the health-education nexus in a primary school in the Australian Capital Territory (ACT).

Taking Responsibility seeks to address the ‘wicked’ problem of ensuring that students experiencing non-negligible school absence due to significant injury or illness remain engaged with their schooling. It explores cultures and practices within Australian health and education systems; it examines systems within the health-education nexus that can create an education experience for some children that fails to meet the necessary inclusion and equity principles provided for in legislation and policy.

1 MissingSchool is an advocacy organisation, which aims to have the special learning and social needs of seriously sick kids realised through every day practices in their schools. See http://missingschool.org.au/

http://missingschool.org.au/


Rationale An analysis of data from the Australian Bureau of Statistics by the Australian Research Alliance for Children and Youth (ARACY) estimates that around 1.6 per cent of school students in Australia experience non-negligible absence as a result of significant illness or injury (excluding mental illness). This equates to a figure of approximately 60,000 students (Gilmour, Hopkins, Meyers, Nell & Stafford, 2015). Absence from school is an issue which has the potential to detrimentally affect both academic and social development for students with significant illness or injury (Niselle, Hanns, Green & Jones, 2012). Students who are absent from school and disengaged from learning are not participating in and experiencing education that enables them to reach their full potential and maximise their life opportunities (ARACY, 2014). Poor outcomes for these children and young people include: “increased likelihood of academic failure, psychosocial problems, incompletion of high school qualifications and failure to progress to post-secondary education” (Wilks, Green & Tsharni, 2012, p.265).

There is an ongoing need for attention to access and equity efforts to assist disadvantaged students (Vinson, 2002). Equity of access to education for students with significant illness or injury is an issue of social justice. Taking Responsibility is informed by Bronfenbrenner’s (1977) work on multi-person and multi-setting systems of interaction. The health-education nexus is a multi-person system of interaction not limited to a single setting. There are many aspects of the environment surrounding students with significant illness or injury which move beyond the regular school or the student’s home.

An increased sense of connectedness with school is a significant factor in a future sense of well-being for children and young people (Jose & Pryor, 2010; Yates et al., 2010). In order to facilitate this sense of connectedness, ARACY and MissingSchool have proposed a framework for educational inclusion and equity for students with significant illness or injury. This framework includes: “greater integration and alignment of health, education and social support provision, and methods to ensure that students have continuing connection with their regular school when absent from it” (Gilmour et al., 2015, p.7).

In this case study, elements of the framework are tested, through a study of facilitated collaboration between the network of players involved in the education of children and young people with significant illness and injury. This network includes the student, their parents/carers, school staff, school leaders, medical practitioners and other Health and Education Directorate staff.


The Case Study

Purpose The aim of the case study is to facilitate a focussed, participatory process to strengthen collaboration between students with significant illness or injury, their parents and carers, teachers, school staff and medical professionals. The major objective of this case study is to demonstrate how health and education professionals can work together with students and their families as a network, to ensure students remain connected to their school and education while they are absent due to significant illness or injury.

The research questions guiding the case study are:

Can the introduction/facilitation of collaboration between network members improve the school connection and academic engagement of children and young people living with significant illness or injury?

Is the direction of any changes in collaboration consistent across the different members of the network? Do attitudes about trust and collaboration processes change as the network evolves? If so, what changes are evident, and what can be learned from these changes?

The systems The two major systems present in this case study are the ACT Education Directorate and ACT Health. The Education Directorate (ED) identifies education priorities and the development of strategies, policies and planning for improved learning outcomes through the 87 ACT Government schools (http://www.education.act.gov.au/about_us). ACT government schools are largely responsible for the development of school based curricula in line with the Australian National Curriculum, assessment practices and pedagogy, underpinned by regular school based evaluation (Hugh Watson Consulting, 2004). The Canberra Hospital School is an ED operation, based in the Centenary Hospital for Women and Children. ACT Health works to provide services where the patient is the central focus, and seeks to deliver patient-centric care within a culture that showcases values of care, excellence, integrity and collaboration (ACT Health, 2016).

As the ACT is a small jurisdiction, there are instances when students with significant illness or injury receive treatment outside the ACT, often in Sydney. While that situation did not occur during this case study, it is important to recognise that it can happen. In such cases, ACT students and their families are working across four major systems in two different jurisdictions, with no formal arrangements in place between the systems or jurisdictions.

http://www.education.act.gov.au/about_us


The school Muyulun Primary School (MPS) is a government school for students from Pre-School to Year Six, located in the north of Canberra. The ICSEA ranking of the school has experienced slight variations over the last five years, and currently sits at 1054 (www.myschool.edu.au ). Census figures from 2011 (Australian Bureau of Statistics, 2013) state that this area of Canberra has a median weekly household income of $1,839, lower than the ACT median of $1,920 but higher than the Australian median of $1,234. An employment analysis states that 31.1 per cent of the population are professionals, compared to the Australian rate of 21.3 per cent and the ACT rate of 29.7 per cent. Indigenous residents in the area make up 1.2 per cent of the population, which is slightly lower than the ACT percentage (1.5 per cent) and the Australian percentage (2.5 per cent) (Australian Bureau of Statistics, 2013). There are approximately 440 students attending the school, including students from 28 different countries. The school has 27.2 full time equivalent teaching staff.

Over recent years, MPS executive staff have recognised the need for improved collaboration to support students experiencing non-negligible absence from school due to significant illness or injury, involving the students, the families, the school and medical professionals. This realisation has occurred after a number of stressful incidents which impacted upon the mental health and well-being of students, family members and school staff. In the past, members of the MPS executive team have been unsuccessful in building shared understandings with a range of medical professionals. In working with families of students experiencing non-negligible absence from school due to significant illness or injury over a number of years, the school leadership has been frustrated by existing disability support processes which do not adequately cater for these students’ needs. Two families from MPS agreed to participate in this research.

Mim’s network Mim West is a vibrant Kindergarten student at MPS. The West family is one of the many culturally and linguistically diverse families at MPS, and Mim lives with her parents and two older siblings. Mim is a caring and confident five year old, who enjoys dance, animals, drawing, running, playing with a ball and cooking. She is living with Type One Diabetes, a potentially life-threatening condition which impacts the body’s capacity to produce and regulate insulin. During the data collection period, Mim was absent from school and at home for two full days and two half days.

In addition to the family and MPS representatives, Mim’s network included the Diabetes Educators from the Canberra Hospital, and a registered nurse from the

http://www.myschool.edu.au/


Healthcare Access at School (HAAS) program2 (both Diabetes Educators joined the network, on the understanding that one of them would attempt to be available for network meetings, and both would collaborate with the network members as required). Jael (the MPS Community Coordinator) was chosen by the network members for the Lead Worker role.

Table 1 - Mim's Network

Participant Role in the network

Mim Student

Margaret Parent

Jael Lead Worker, MPS Community Co-ordinator

Kalea Deputy Principal, MPS

Ly Health Access at School (HASS) Nurse

Whina and Jin Diabetes Educators, Canberra Hospital.

At the first meeting, members of the network identified the following shared understandings of the purpose of the network:

• to support all the members of the network, through building trust and understanding and reducing anxiety;

• to deepen the support around Mim;

• to ensure that the adults and systems around Mim communicate and collaborate well, to make things easier for Mim and Margaret;

• to ease transitions; and

• to streamline communications.

As a means of evaluating the success of the network, the following objectives were developed:

2 HAAS is a support program for students who with complex or invasive health care needs which require action on school premises. The program involves the development of a Healthcare Support Plan, and training, assessing competencies and providing ongoing support to school staff in completing medical procedures such as measuring blood glucose levels.


Table 2 - Objectives for Mim's network

Objectives Evidence of achievement

Mim to be safe and healthy at school Communication is established and maintained between network members so that all involved have the information necessary to keep Mim safe and healthy at school.

School staff receive diabetes education from HAAS

Minimise Mim’s diabetes related absence from school

There is continued vigilance in relation to Mim’s medical plan to ensure continued good attendance

Minimise the impact of absence on Mim’s academic and social connection to school

School is advised well in advance of any planned absences (clinic etc.).

Successful network communication There is a successful flow of information around Mim and Jael (Lead Worker).

Bina’s Network Bina Henare is a Year Six student at MPS. She lives with her mother Marika, her younger brother and her father. Bina is a creative student who enjoys making up stories (though is not so keen on actually writing them down as yet) and does a great deal of imaginative play with her friends. Bina is involved with Canberra's Pathfinder Roleplaying Association games and is doing very well in an activity that is aimed at adults. She is fond of animals of all kinds and has been riding horses since she was three years old. Bina breeds and trains her own pet rats and is very proud of this. She takes a keen interest in a wide variety of topics, including world events, history, geography, science and mythology. Bina is enamoured of dragons and has an extensive knowledge of medieval terms and weaponry. She also enjoys playing computer games, particularly Animal Jam and Bethesda's Oblivion, and video conferencing conversations with her friends. Bina is living with cystic fibrosis (CF), a terminal genetic condition which affects the respiratory and digestive systems.

During the data collection period, Bina attended school for seven days, was admitted to hospital for 21 school days, and was absent from school and at home for the remainder of the term (22 school days). In addition to the family and MPS representatives, Bina’s network included a teacher from the Canberra Hospital


School, a member of the Canberra Hospital Paediatric Outpatient Clinical team, and a psychologist. Jael (the MPS Community Coordinator) was chosen by the network members for the Lead Worker role.

Table 3 - Bina's Network

Participant Role in the network

Bina Student

Marika Parent

Jael Lead Worker, MPS Community Co-ordinator

Kalea Deputy Principal, MPS

Mary Hospital School Teacher

Chiyo Clinical Nursing Co-ordinator, Paediatric Outpatients, Canberra Hospital.

Eerika Psychologist, Canberra Hospital

At the first meeting, the network members identified the ongoing challenge of collaboration around Bina’s academic and social connection to school, which has been complicated by her history of non-negligible absence due to her illness. While Marika did not have historic data available, she estimated that Bina had been absent for approximately 60 per cent of the previous academic year. At the time of the first network meeting in Week Four of Term One, Bina had attended MPS for three days. All network participants expressed concern about the lines of communication between the health and education environments, and the impact that these challenges were having on the relationship between Bina, Marika and the school. Issues of privacy, consent, and differing expectations between the health and education environments were discussed in detail.

As a means of evaluating the success of the network, the following objectives were developed:

Table 4 - Objectives for Bina's network

Major Objective Evidence of achievement


Improved communication among network members

There is a reduction in the academic and social impact of Bina’s absences, through better awareness and understanding.

Forward planning is being undertaken around CF clinic dates and outpatient appointments

A standardised practice is established that ensures the Health system is supplying the information about medications that is required by the Education Directorate

Improved relationships between the health system, the education system and the family

There is increased levels of trust between network members

There is an improved understanding of the needs and requirements for information between the Health and Education Directorates

HAAS is approached to provide support for Bina and CF education for MPS staff

Improved understanding of Bina’s academic standing in relation to her cohort

Eerika (Psychologist) has investigated a cognitive assessment for Bina through an educational psychologist

Marika (Mother) has investigated a cognitive assessment for Bina through the NDIS.

Method

Data Collection A mixed methods approach to data collection was followed in this research.

The research instruments in the data collection were:

1. An online inventory of collaboration attitudes and practices (survey run on Survey Monkey). Participants were provided with the link to the survey. Responses were to be completed prior to the first focus group discussions.


2. Semi-structured focus group discussions, at the beginning and the end of the research period. These discussions were recorded and summarised. The summaries were member checked for accuracy.

3. Reflections from research participants. Pro-forma templates for the reflections were provided to the participants. Separate age appropriate templates were provided for the students. The templates were provided to participants via email, and weekly reminders were sent out to encourage completion of the reflections.

4. Debrief interview with Jael – the Lead Worker in both networks.


Table 5- Case study detail

Nature

Purpose To facilitate a focussed, participatory process to strengthen collaboration between students with chronic illness/injury, their parents/carers, teachers, school staff and medical professionals

Objective For participants to explore and reflect upon the collaborative process, in order to identify challenges and successes within the collaborative network

Design

Overall design Single case, embedded design

Holistic unit of analysis Collaboration

Subunits of analysis Students with significant illness/injury, their families, teachers and medical professionals.

Modes of inquiry Quantitative and aualitative

Quantitative

Pre-test: online inventory of current attitudes and practices regarding collaboration

Frequency and duration of collaborations

Qualitative

Pre-test: online inventory of current attitudes and practices regarding collaboration

Participant reflections on collaboration

Focus groups discussions

Debrief telephone interview with Jael (Lead Worker).


Data collection and representation

Participant reflections on collaboration Completed weekly

Focus group meetings Semi-structured, recorded, summaries member checked

Duration Term One 2017

Setting Muyulun Primary School (MPS)

Mode of recording data Written summary of focus group meetings produced from digital recordings

Participant reflections completed in Microsoft Word documents and emailed to researcher

Modes of data representation Quantitative data, factual reporting

Qualitative data, thematic analysis

Data analysis

Inventory A total of eight of the 11 eligible participants completed the online inventory. It was agreed in discussion with Margaret (Mim’s mother) that Mim was too young to successfully complete the survey. This is a return rate of 73 per cent - much higher than the average response rate for online surveys of 25 per cent (http://fluidsurveys.com/university/response-rate-statistics-online-surveys-aiming/), which speaks highly of the importance placed on participation in the project by the respondents. Unfortunately, Bina did not complete the survey. At the time the survey was conducted she was admitted to hospital, and was too unwell to participate. This means that the student voice is not included in the survey responses.

Respondents identified a number of positive and negative elements to collaboration: “The biggest positive is that everyone is on the same page, with the same goals. It is quicker and easier to achieve goals” (Kalea (Deputy Principal), February 2017).

“All are working together for the benefit of the child and their family. A holistic approach is taken. Families appreciate a collaborative approach as it eases the burden that they have in coordinating care and lessens frustration for getting slightly different info from the various health professionals. You

http://fluidsurveys.com/university/response-rate-statistics-online-surveys-aiming/


learn a lot from other health professionals and families” (Whina (Diabetes Educator), February 2017).

Other positives included building shared understandings, and heading off little problems before they become big ones.

The negatives centred on the challenges of time and effort involved in collaboration, including the fact that collaborative decision making can be more complex. There are sometimes difficulties collaborating within medical teams, which can cause frustration: “When other professionals do not understand the health implications or wider implications on the family” (Ly (HAAS Nurse), March 2017).

Several respondents spoke about the benefits of collaboration outweighing the challenges: “There are very few negatives. It is worth while taking the time to establish the various roles so work is not being doubled up and toes are not being stepped on” (Whina (Diabetes Educator), February 2017).

A common theme across the educational and medical or allied health respondents was the need for improved communication across the health-education nexus, and the need for a “common access point” (Ly (HAAS Nurse), March 2017). Mary (Hospital School Teacher) neatly summarised this as “Communication, relationships, connection” (February 2017).

Focus groups Four focus group meetings took place at MPS. Participants either attended face to face, or joined the discussions via telephone. Bina and Marika were unable to attend the final focus group meeting for their network, as they were delayed at the CF Outpatient Clinic at the Canberra Hospital. They met separately with the researcher at a later date, reviewed the record of the network meeting and added their comments.

There were a number of shared themes that arose during the focus group discussions. In order of the frequency of discussion, these themes were: collaboration, reflection, attendance and academic achievement.

Collaboration It is not surprising to discover that this theme dominated the focus group discussions, as it is the focus of the case study. The participants identified multiple elements to collaboration during their discussions, including communication, support, trust and the significance of the Lead Worker role. There were also discussions


around the collaborative conversations between individual members of the networks, as well as those shared more broadly throughout the network.

Communication Participants recognised successful communication as pivotal to the success of the network, and expressed a desire for “streamlined communication, so that there is no confusion about who is contacting who and how the information flows” (Jael (Lead Worker), 21 February 2017). The participants acknowledged that there is a difference between wanting and achieving successful communication, and set goals in relation to establishing and maintaining communication between the network members, in order to support Mim and Bina. This was particularly significant for Bina’s network, where there had been ongoing challenges regarding communication between network members for some time.

Support and trust Both networks were established with the students at the centre, with goals in relation to communication across the network to ensure the best outcomes for the students. For those outcomes to be realised, the members of the network needed to trust one another, and be willing to offer and receive support as required. Trust and support were areas of challenge in both networks, for different reasons.

As Mim’s diagnosis occurred less than two years ago, her family and the school are still very much learning how to manage Mim’s needs. This is of course complicated by the fact that during the research period she was in her first term of Kindergarten. School transitions generate stress and uncertainty for children with significant illness, their parents, their teachers and their support staff. While Margaret acknowledged the quality of the support Mim received at MPS, Ly (HAAS Nurse) was concerned that there were too few support staff trained to provide an appropriate level of care for Mim.

Bina’s network began with an acknowledgement that there were pre-existing challenges around trust and support across the network, which were explored in some detail at the initial network meeting. While there was a prior history of negative experiences, all the members of the network were committed to increasing levels of trust and support for one another. At the end of the research period, Jael noted that her role as a new point of contact between the family and the school appeared to have allowed for some mending of that relationship (Jael (Lead Worker), 3 April 2017). Marika (Mother) agreed that there was “certainly potential for increased levels of trust” (4 April 2017).


Lead Worker role Participants identified the pivotal nature of the Lead Worker role for the free flow of information around the network. It was hoped that the nature of the Lead Worker role would “improve communication flows, and allow broader discussions from the planning side” (Eerika (Psychologist), 20 February 2017).

The agreed protocol for communication within the networks was that Jael (Lead Worker) would be included in any email conversations. This included when the parents emailed the school to advise of student absence, when medical appointments were made for during school hours, and sharing of information about medical treatment such as changes to medications or treatment procedures.

There were flow-on effects on the occasion that Mary (Hospital School Teacher) failed to include the Lead Worker in an email conversation with Bina’s classroom teacher (The teacher was away from school on sick leave for a week, and so there was no contact between MPS and the Hospital School regarding Bina’s academic connection during that time). Had Jael (Lead Worker) been included in the original email, the delay could have been significantly reduced.

Marika (Mother) valued Jael’s contribution as the Lead Worker, as “there hasn’t been someone in the role before” (10 April 2017). As well as being a central point of contact for phone, email or face to face conversations, the Lead Worker was seen as an advocate for both the students and the school staff (Ly (HAAS Nurse), 4 April 2017).

Collaborative conversations During the research period, there was evidence of many collaborative conversations between the members of the networks, and specifically across the health-education nexus. While the detailed analysis of the collaborative conversations between the members of the networks is explored in Reflections, the conversations were also a regular theme in the focus group meetings.

At the initial meetings, both networks identified that there were already collaborative conversations happening between various members: family and MPS, family and Hospital School, Hospital School and MPS. These conversations continued throughout the research period, with the addition of involvement of the Lead Worker. The area of focus for this element of the research is the collaborative conversations which occurred across the health-education nexus – between the MPS staff, the Hospital School staff and the medical/allied health professionals.


Collaborative conversations between MPS and the health system around Bina had a fraught history – Bina’s network was beginning from a deficit position in this area. This situation had the potential to impact on Mim’s network and any other collaborative conversations across the health-education nexus involving MPS. Central to the pre-existing challenges around collaborative conversations across the health-education nexus were two major points:

(i) Privacy and communication flows around medical information Standard practice for the medical and allied health professions requires specific written permissions for the sharing of medical information. In the past, this has proven problematic for a speedy response to some of the concerns at MPS around medication and Bina’s physical capacity to participate in elements of the school program. Previously there was no standing consent and MPS did not have a direct contact into the medical and allied health team supporting Bina. As all participants in the research had signed consent forms which included statements about privacy and the flow of communication concerning medical information, this particular point did not create any issues during the research period.

(ii) Differing requirements/expectations across the Health and Education Directorates During Bina’s initial network meeting it became apparent that there were conflicting requirements and expectations across the Health and Education Directorates in relation to information about medical treatment. Chiyo (Clinical Nursing Co-ordinator) explained that the Health system “treats the parent as the expert on the child, and trusts them to provide the necessary information about medical treatment to the Education system”. MPS has found that this practice does not allow them to comply with the requirements of the Education Directorate in terms of reporting and duty of care. As the networks provided an opportunity for MPS to work collaboratively with staff within the medical and hospital systems, one of the goals for Bina’s network was to work through the Education reporting requirements.

Reflections in the focus groups During the final focus group meetings, members of both networks were encouraged to reflect upon what they had gained through their involvement. Four major themes emerged from those reflective conversations: awareness, changes to practice, communication and relationships.

Awareness Chiyo (Clinical Nursing Co-ordinator) commented on the fact that her involvement with the research had increased her awareness of the different ways that schools


and the hospital define risk. Mary (Hospital School Teacher) identified a deepened awareness of the importance of distinct and deliberate communication, particularly across the health-education nexus. Jael (Lead Worker) identified an increased depth of understanding of the HAAS program.

Changes to practice Chiyo (Clinical Nursing Co-ordinator) and Eerika (Psychologist) noted that their participation in the network had impacted on their professional practice. Both found themselves “trying to see things from the school perspective more” (Eerika, 4 April 2017), which impacted on the way they engaged with schools other than MPS. After her original failure to include the Lead Worker in an email to Bina’s classroom teacher, Mary (Hospital School Teacher) found that she was more likely to include more than one teacher in an email regarding academic work for any student in the Hospital School.

Communication This was the area of most reflective comment from the focus groups. The participants all spoke favourably about the communication within the networks across the research period, and expressed a desire for the networks to continue in this role after the conclusion of the research. There were suggestions about ways to improve communication further, and thoughts regarding other people who would benefit from being involved in the networks.

Margaret (Mother) felt that the network communication had “set things up for good outcomes in the future if and when Mim is absent from school” (4 April 2017). Jael (Lead Worker) found that she had “more parent contact, and a better way of working” (4 April 2017) with other members of the network. Marika (Mother) believed that “it was good to get people talking” (10 April 2017). She identified clear potential for the conversations to continue on after the research period, and thus saw the possibilities of a continuation of the level of support for Bina and the family that the network provided.

Relationships Closely linked to the communication discussion were the reflections on relationships between members of the networks. As the only person who was involved in both networks, Jael (Lead Worker) stressed the value of the collaborative process in building relationships with other network members. Due to Bina’s extensive absences, Marika (Mother) felt that there had been no opportunity to build on the


potential for relationship construction and strengthening that the network involvement offered.

Reflections

Quantitative Data The case study ran across seven weeks, and there are a total of 12 participants (six in each network). This creates a total possible number of reflections submitted of 84. Of these, 36 were actually submitted – a disappointing response rate of 43 per cent. This is in stark contrast to the over 70 per cent response rate for the online survey. It appears that the weekly commitment was more demanding for the participants than the one off survey, and the response rate declined accordingly.

In an attempt to ensure that the student voices were included in this research, specific reflection templates were created for each of the student participants. Neither student reliably produced reflections, nor reported any collaboration with members of the network outside their immediate family. It appeared possible that the students were simply too young to provide regular reflections. However, members of Bina’s network did report collaborative contacts with her during her hospital admissions. Bina did not complete any reflections during her admissions – this is perhaps not surprising given her ill health at that time. The low levels of completed reflections from the students may imply that the data collection method was unsuitable for this context – this is explored further in Co-design or lack thereof.

There are a number of inconsistencies in the reports of collaborative contacts across both networks. While in one week, a participant may detail multiple contacts with another member of the network, that member of the network may report a different number. This has required that the collaborative contacts between members of the networks are recorded as a range, rather than a value.

Mim’s Network The response rate for reflections in Mim’s network was 48 per cent. The week with the most returns and the highest number of collaborative contacts reported in this network was Week Four of Term One – the week of the initial network meeting, with eight contacts reported.

The member of the network who reported the most collaborative contacts was Ly (HAAS Nurse), who was the only member of Mim’s network to lodge a reflection for every week of the research period. Ly (HAAS Nurse) reported 22 collaborative contacts across the network during the eight weeks. She detailed contacts with most members of the network on at least one occasion. The majority of these contacts (15) were with Mim and Margaret (Mother), and the next most frequent (7) were with Jael (Lead Worker). The next most frequent collaborator was Margaret, who


also reported contacts with every member of the network on at least one occasion, and detailed ten collaborative contacts across the eight weeks.

The other members of this network lodged reflections on less than 25 per cent of the opportunities available. Jael (Lead Worker) did not provide any reflections, and the Diabetes Educators provided two, both of which reported zero collaborative contacts.

The range of reported collaborative contacts between the members of the network is provided in Table 6. The range of reported contacts is largest (10) between Margaret (Mother) and Ly (HAAS Nurse). In the second week of the research, Margaret reported one contact with Ly, but Ly detailed five contacts with Margaret. There are several weeks where Margaret reports no contact, while Ly (HAAS Nurse) reports at least one interaction with Margaret.

Table 6 - Contact matrix (Mim)

Ly Jael Diabetes educators

Margaret and Mim 5-15 0-3 0-1

Jael 0-7 0

Diabetes educators 0 0

Bina’s network The response rate for reflections in Bina’s network was 38 per cent. The week with the most returns was Week Five of Term One. The week with the highest number of reported collaborative contacts was Week Eight, which only has two reflections provided. This variation can be explained by Bina’s hospitalisation during Weeks Seven and Eight. During her hospitalisation, there are multiple collaborative contacts reported between Bina, Marika (Mother), Mary (Hospital School Teacher), Eerika (Psychologist) and Jael (Lead Worker).

The member of the network who reported the most collaborative contacts was Mary (Hospital School Teacher), who was the only member of Bina’s network to lodge a reflection for every week of the research period. Mary reported 44 collaborative contacts across the network during the eight weeks. She had contacts with every other member of the network on at least one occasion. The majority of her contacts (30) were with Bina and Marika, and eight were with Jael (Lead Worker) at MPS. The next most frequent collaborator was Eerika (Psychologist), who also reported


contacts with every member of the network on at least one occasion, and detailed 13 collaborative contacts across the eight weeks.

Two members of this network lodged reflections on less than 50 per cent of the opportunities available. Chiyo (Clinical Nursing Co-ordinator) did not provide any reflections, and Jael (Lead Worker) lodged a reflection once (for the first week of the research period). Marika (Mother) provided four reflections, spread across the middle of the research period. These reflections covered periods in time when Bina was admitted to the hospital and at home.

The range of reported collaborative contacts between the members of the network is provided in Table 7. The range of reported contacts is largest (26) between Mary (Hospital School Teacher) and Marika (Mother). Part of the discrepancy between these reported contacts can be explained by Marika and Bina’s lower rate of reflection lodgement. In the four weeks when Bina and Marika both did not lodge reflections, Mary (Hospital School Teacher) reports on 13 contacts with them, nine of which were with Bina and occurred during her hospitalisation. There are significant differences in the number of reported collaborations between Mary (Hospital School Teacher), Marika (Mother) and Bina during the sixth and seventh weeks of the research period. Mary reported seven contacts with the family in each week, but Bina did not lodge reflections and Marika reports only one contact with Mary in each week.

Table 7 - Contact matrix (Bina)

Jael Mary Eerika Chiyo

Bina and Marika 0-4 4-30 2-10 0

Jael 0-8 0-1 0

Mary 0-8 1-2 0-2

Eerika 0-1 1-2 0-1

Chiyo 0 0-2 0-1

Qualitative data The qualitative data from these reflections provides further information on the nature of the Health-Education nexus, the participants’ views on the effectiveness of the collaborative conversations, and the positive or negative elements of those collaborations.


Health-education nexus The reflections from the health and education professionals in the week after the initial focus group meeting are insightful. Eerika (Psychologist) reflected on the subtle differences between the way that Paediatrics and Education work with families, and how these differences can magnify the challenges associated with the two areas working together effectively. She spoke about “learning what education requires in both information and education about management of chronic conditions” (17 February 2017). Mary (Hospital School Teacher) also took the opportunity to reflect on this point. “I was really excited about the fact that health and education were finally connecting. We can only hope that this is the beginning of well needed systemic change” (17 February 2017).

Effectiveness The participants reviewed the effectiveness of the collaborative conversations on a seven point scale from extremely ineffective, to extremely effective. The results of those reviews are listed in Table 8.

Table 8 - Participant ratings of effectiveness of collaborative conversations

Rating Number of occurrences

Extremely effective 3

Very effective 8

Effective 1

Somewhat effective 13

Ineffective 1

Very ineffective 3

Extremely ineffective 1

It is interesting to note that all of the ‘extremely effective’ and ‘very effective’ ratings occurred during the weeks of the focus group meetings (Weeks Four and Ten of Term One). The participants who supplied their reflections clearly found the face to face whole group conversations to be more effective than other contacts with network members.


The most frequent rating is ‘somewhat effective’. The qualitative comments provide an opportunity to explore why many of the participants viewed their collaborative conversations as not being as effective as they would have liked:

“No reply from mum regarding changes to the care plan, this could be because mum/dad are happy with the current plan or just very busy with mum commencing a new job” (Ly (HAAS Nurse), 24 March 2017).

“I would have liked to have collaborated with more people within the network” (Eerika (Psychologist), 24 March 2017).

“The collaborations with Bina were very brief due to her health, medical commitments and low mood levels” (Mary (Hospital School Teacher), 24 March 2017).

“I received some information” (Margaret (Mother), 17 March 2017).

“In order for it to be an effective collaboration I need to include the school” (Eerika (Psychologist), 10 March 2017).

“Fine with Mary because Bina is admitted, but limited with Jael because Bina is admitted” (Marika (Mother), 10 March 2017).

It is apparent from these comments that there are a number of elements which impact on the effectiveness of these particular collaborative conversations, ranging from the capacity of the students or the family to respond or engage in the conversations, to the participants identifying potential flaws in their collaborative practice. There is also an occasion where Marika (Mother) averages out the rating across multiple conversations.

There is potentially much to be learned from the negative rankings – ineffective through to extremely ineffective. These rankings occur on five occasions, and several of these involve Ly’s (HAAS Nurse) reflections. She spent a significant portion of the data collection period experiencing frustration at being unable to obtain extra MPS personnel to be trained in the skills required to ensure Mim’s safety at school – monitoring blood glucose levels and administering insulin injections. This frustration is reflected in ineffective ratings for the collaborative conversations with MPS. It appears that the conversations have been rated as ineffective because they did not achieve the outcome that Ly was looking for.

Positive and negative elements It was pleasing to discover that the participants identified more positive than negative elements in their experience of the collaborative conversations (17 positives vs five negatives). The positive elements included involvement from members of the network in updating Mim’s care plan and Bina’s ILP. Mary (Hospital School Teacher),


Eerika (Psychologist) and Marika (Mother) found many positives in their face to face conversations during Bina’s multiple hospital admissions, particularly in relation to sharing their concerns about the impact of Bina’s ill health on her mood, and her engagement with learning. There are reflections on the positives of collaboration in terms of planning, both for Mim’s care plan, Bina’s ILP, and Bina’s transitions to Distance Education in Term Two and secondary education in 2018.

A significant aspect of the positive elements includes reflections on interactions across the health-education nexus. Ly (HAAS Nurse), Eerika (Psychologist), Mary (Hospital School Teacher) and Marika (Mother) all spoke positively in this space, and Eerika sums up their thoughts well:

“The positive element of my collaboration this week was that the team conversation highlighted the importance of greater connection between education and health. The discussion for me highlighted both the complexities and the gaps pertaining to the development of a holistic approach and emphasised the importance of doing so. The team conversation provided the opportunity for all members to begin to gain an understanding from different perspectives and in turn work through some of the issues (Eerika, 7 April 2017).

The bulk of the negative experiences again revolved around Ly’s (HAAS Nurse) frustrations at being unable to obtain extra MPS personnel to engage in supporting in the management of Mim’s diabetes. Marika (Mother) occasionally found it challenging to remember to include Jael (Lead Worker) in her regular email conversations with the school regarding Bina’s absences, and there was an occasion when she emailed Jael without following the formal school requirements for notifying Bina’s absence. Mary (Hospital School Teacher) also included the occasion on which she failed to include Jael (Lead Worker) in an email conversation with the classroom teacher in her discussion of negative elements.

Lead Worker Debrief Jael’s debrief interview took place after the rest of the data had been collected and analysed. This interview provided an opportunity for Jael (Lead Worker) to reflect on the challenges involved in fulfilling the Lead Worker role. She also took the opportunity to provide recommendations for practice in future networks.

Challenges Jael found the process of completing reflections overly demanding and inaccessible. Other challenges for Jael (Lead Worker) included a lack of support and guidance available, a lack of shared language and a lack of knowledge and authority.


Reflections “Some sort of online survey monkey style tool would have been much easier” (Jael, Lead Worker, 15 May 2017)

An online tool would have also saved Jael (Lead Worker) time, as she would not have been required to enter information, save a document and then email that document to the researcher. The issue of suitability of data collection tools was potentially also an issue for Bina and Mim.

Support and guidance As discussed in the final focus group meeting, Jael (Lead Worker) felt that she needed more support and guidance in the Lead Worker role than was provided to her. She was new to her role in the school, as well as new to her role as Lead Worker. This learning curve proved too steep for her to manage without support. There were occasions when she was “unsure of what to do with the information received” (Jael, 15 May 2017) – the provision of some training, mentoring or written guidelines would have helped her significantly.

Shared language As a social worker, Jael was keenly aware of the differences between her role and the role of the teaching staff. She felt that there was an absence of shared language between herself and other members of the network, which potentially limited her effectiveness in the Lead Worker role.

Knowledge and authority There were occasions when Jael (Lead Worker) felt that she was dealing with questions that she had neither the knowledge nor authority to answer, and thus she felt very limited in her capacity in the Lead Worker role. She suggested that future Lead Workers must be in positions of some authority, with the capacity and delegation to make decisions around practice in the school.

The research questions Members of the focus groups evaluated the success of the networks in regard to the research questions.

Was there more or less collaboration with members of the network than there was before? Explain. Margaret (mother), Chiyo (Clinical Nursing Co-ordinator) and Jin (Diabetes Educator) felt that the level of collaboration was unchanged. As Jael (Lead Worker) was new to MPS, she did not have anything to compare the level of collaboration with, so was unable to comment on this question. Marika (mother) stated that collaboration with


Jael (Lead Worker) had definitely increased, as prior to the research she had not worked with Jael before. Ly (HAAS Nurse) felt that there was an increase in collaboration between MPS and HAAS, which contributed to a more positive relationship.

There was more collaboration occurring within Bina’s network between Mary (Hospital School Teacher), Eerika (Psychologist) and Marika (Mother) than had been occurring last year. In part, this increase can be contributed to the increased number of admissions that Bina had during the research period. However, the collaboration between Mary and Eerika was also occurring at times when Bina was not admitted, which had not previously occurred. This continuing collaboration outside hospital admissions enabled discussions of longer term issues such as Bina’s transition to high school – an area which will benefit from broader network discussion.

Marika (Mother) believes that part of the explanation for there being no major increase in the level of collaboration across Bina’s network was her CF management fatigue – she was “’done’ by the time the second admission happened, and had no capacity to keep pushing, organising or communicating” (10 April 2017). Collaboration was beyond her capacity at that point in time. It is interesting that despite her willing participation in the collaborative network, and the appointment of Jael as Lead Worker, Marika still expresses an expectation that collaboration will only happen if she drives it.

Is the direction of any changes in collaboration consistent across the different members of the network? It was not possible to determine an answer to this question from the information provided by the participants. This is in part a result of the limited return on the participant reflections, and the challenges of the range of reported collaborative contacts.

Had there been more time available for data collection, exploration of this point in individual interviews could potentially have provided more information in relation to this point. Future research in this area may be warranted, as information about who is initiating collaborative conversations and why this is so could potentially provide valuable information to assist in the establishment of future collaborative networks.


Did the collaboration between network members improve school connection and academic engagement for the students?

If yes, how/why?

If no, why not? Mim had very few absences during the time that the network was operating, so her social and academic connection was not at risk. There was no change to her school connection or academic engagement during the research period.

Given the improved relationship between MPS and HAAS, and the plans to train more MPS staff in diabetes management, there is a real possibility of improved school connection for Mim in the future, around such activities as sports carnivals and excursions. With the provision of extra trained staff, the possibility of Mim being unable to attend school due to the absence of trained support staff would also be reduced.

Bina’s school connection and academic engagement has not been improved by the establishment of the network. All the network members commented on the fact that Bina’s extreme ill-health this term has severely limited her capacity to engage with her academic work. Marika’s (Mother) CF management fatigue has also impacted on Bina’s social connection to MPS. For example, Jael (Lead Worker) emailed Marika regarding building Bina’s social connection through Bina attending a once a week lunch-time craft group during her absence. Marika did not have the physical or emotional capacity to act on this invitation.

Do attitudes about trust and collaboration processes change as the network evolves?

If so, what changes are evident, and what can be learned from these changes? Several participants spoke about increased levels of trust across members of the network. Ly (HAAS Nurse), commented on how the improved relationship between HAAS and MPS has involved increased levels of trust between the two. Bina’s extended absences and Marika’s CF management fatigue limited the opportunities for Marika and Jael (Lead Worker) to follow up on the openings from the first network meeting.

It was agreed that a major element of collaboration processes between the Health and Education directorates was the need to build better understandings of the other systems, and the levels of detail and types of information required from the other system.


The network objectives Each network established objectives, and the success of the collaborative networks was evaluated through the achievement of those objectives.

Mim’s network Objective Outcome Success? Red = No

Green = Yes Orange = under development

Establish and maintain communication between network members so that all involved have the information necessary to keep Mim safe and health at school.

Though the communication between the network members varied across the research period, there was general consensus that there had been useful and appropriate flows of information across the network

Diabetes education for school staff from HAAS

While Ly (HAAS Nurse) has worked hard to achieve this goal, it had not occurred by the end of the research period

Continued vigilance in relation to Mim’s medical plan to ensure continued good attendance

Mim’s attendance was excellent across the research period. Feedback from network members in reflections and the final focus group meeting expressed satisfaction with the updated care plan

School to be advised of any planned absences (clinic etc.) well in advance

N/A ‒ there were no absences N/A

Successful flow of information around Mim and Jael.

Feedback from network members in reflections and at the final focus group meeting expressed satisfaction with the flow of information, though they planned future


development a visualisation of the communication process to improve this further.

Mim’s network was partially successful.

Bina’s network Objective Outome Success? Red = No

Green = Yes Orange = under development

A reduction in the academic and social impact of Bina’s absences, through better awareness and understanding

Not achieved – Bina’s extensive absences have impacted upon Marika’s and Bina’s capacity to engage with MPS staff in this area

Forward planning around CF clinic dates and outpatient appointments

Unknown

Creation of a standardised practice which ensures that the Health system is supplying the information about medications that is required by the Education Directorate

Jael (Lead Worker), Eerika (Psychologist) and Chiyo (Clinical Nursing Co-ordinator) have begun discussions, but not yet finalised the outcome

Increased levels of trust between network members

Improved understandings of needs and requirements for information between the Health and Education Directorates

A number of network members have reflected on this point extensively. Still an ongoing area of development

An approach to HAAS for support for Bina and CF education for MPS staff

Ly (HAAS nurse from Mim’s network) has arranged updated CF education for MPS staff. Bina does not qualify for HAAS support


Eerika (Psychologist) to investigate a cognitive assessment for Bina through an educational psychologist

Eerika reported to the final focus group meeting that the wait for a cognitive assessment through the health system would be extensive. Jael (Lead Worker) is investigating an assessment through MPS.

Marika (Mother) to investigate a cognitive assessment for Bina through the NDIS.

Unknown

Bina’s network was partially successful.

Discussion

Inventory The first and most obvious challenge from the online inventory was the absence of student voice as a result of Mim’s youth and Bina’s ill-health. In an attempt to increase the input from the students in the remainder of the data collection, the student reflections pro-formas were revised with input from both students and parents and individualised to each student. Unfortunately, these changes proved insufficient to ensure adequate inclusion of the student voices.

The clear identification of the need for collaboration across the health-education nexus, and the discussion of the benefits of such collaboration outweighing the costs set the tone for the remainder of the research.

Focus groups The focus group meetings proved highly valuable. The participants rated the collaborative conversations which occurred at the focus group meetings as extremely or very effective. One clear indication of the value which was placed on the focus group discussions was the desire for the continuation of those discussions after the end of the research period. Mim’s network set dates for meetings in Term Two at the end of the final focus group meeting, with health and education network members committing to attend. Members of Bina’s network also expressed a desire for further network meetings in the future.


The focus group discussions also provided feedback on how collaborative communications across the networks could be improved, with a view to making things easier for the participants in these networks, but also for any future networks which may be established. There was consensus across both networks that mapping out the communication process within the network would be helpful – the provision of a flow chart or a map of communication flows to remind participants of the importance of collaborative conversations, and provide a visual prompt to remember to include appropriate members of the network in any conversations. This formalisation of “when to communicate and who to communicate with” (Eerika (Psychologist), 3 April 2017) was seen by multiple members of the networks as particularly valuable for communication flows across physical distance and the health-education nexus. The usefulness of such resources would potentially be magnified in a situation where an ACT student was being treated in a Sydney hospital.

It was pleasing to see the networks taking initiatives to ensure that the collaborative process would continue past the research period. This, and the discussion around formalising and visualising the communication flow across the networks, suggests that the participants both valued and had taken ownership of the networks. Whether or not they are successful in their endeavour to continue with the collaborative networks is not one of the research questions for this project, but is certainly an area of great interest for the future.

Reflections The low rate of return and the range of contacts reported in the reflections limited the validity of the data that they provided. With a return rate of less than 50 per cent, it is inappropriate to draw significant conclusions regarding the effectiveness or otherwise of the collaborative process from this data alone. This is of particular relevance in relation to the role of the Lead Worker, as Jael (Lead Worker) was one of the participants who lodged very few reflections.

Co-design or lack thereof Part of the value of the reflections is in what can be learned from the low return rate. It is apparent from the rate of return that even with weekly prompts from the researcher, this level of regular reporting was problematic for the participants. This is perhaps an indication of the challenges of their lived experience. Marika’s “CF management fatigue” (10 April 2017) clearly impacted upon her capacity to provide regular reflections. Children living with significant illnesses; their parents; members of school Executive teams and members of clinical practice teams are coping with a wide range of issues and extremely limited time in which to manage those issues. While it is vital to ensure that the voices of these individuals are present in the


research, “nothing about us without us”, it is clear that in this case study the requirements for reporting were unattainable for many of the participants.

Participatory research methods are geared towards planning and conducting the research process with those people whose life-world and meaningful actions are under study. The fundamental principle of participatory research lies in the decision not to treat the research partners as objects of research, but rather as co-researchers and knowing subjects with the same rights as the professional researchers (Bergold & Thomas, 2012). The time frame available for this study did not allow for the use of participatory research methods. It is possible that different tools could have been utilised and a higher rate of return achieved, had :

• a participatory approach been taken in the planning of this research; and

• the participants contributed in a meaningful manner to the development of the data collection tools.

The irony of the fact that a piece of research into collaborative practice was limited in its own collaborative practice has not escaped the researcher. This serves as a lesson in how important the way outcomes are achieved can be to the achievement of building healthy communities, fostering community trust, engagement, and multi-sectoral collaboration (Minkler, Garcia, Rubin & Wallerstein, 2012).

Lead Worker role There was general consensus from the research participants on the potential value of the Lead Worker role. This reflects the outcomes of other research projects (e.g. Sloper, Greco, Beecham & Webb, 2006 and the Strengthening Families initiative under the ACT Human Services Blueprint https://www.betterservices.act.gov.au/human-services-blueprint#families ).

The Lead Worker role could potentially strengthen the model of patient and family centred care common to many Australian health jurisdictions. Family centred care:

recognises that each family is unique; that the family is the constant in the child’s life; and that they are the experts on the child’s abilities and needs. The family works with service providers to make informed decisions about the services and supports the child and family receive. In family-centered service, the strengths and needs of all family members are considered (Kovacs, Bellin & Fauri, 2008).

In the context of this research, Eerika (Psychologist) described family centred care as:

https://www.betterservices.act.gov.au/human-services-blueprint#families


“where the parents are seen as part of the treating team, are involved in all decision making and in most circumstances are seen as experts in the child (and also act as case managers). We feel that they are the ones that hold the most complete up to date knowledge of all the child’s needs and we expect that they can communicate those needs to the school” (17 February 2017).

It is clear that Marika, and anecdotally other parents of children with significant illness or injury, have difficulty around their role in this area. While parents are experts on their children’s needs and abilities, there are times when management burn-out occurs. The risk of this burn-out may be heightened by the need to navigate the health-education nexus, when the parent is not an expert in the legal responsibilities and administrative needs of both systems. There is clear potential for this difficulty to be amplified in culturally and linguistically diverse families, or families with more than one child experiencing special educational need. Family centred care is aimed at strengthening and empowering families. Within this practice there must be consideration of the fact that an expectation of advocacy is potentially not adequately considering the needs of the family, and if poorly managed risks creating risk and disadvantage.

The family centred approach is a significant element of ensuring that families are in partnership with all those involved in their medical care, and must not be dismissed or devalued. The Lead Worker can potentially work within the family centred approach, ensuring that there is communication between the systems around legal responsibilities and administrative needs, without diminishing the parent’s role as an advocate for their child. In this aspect of the role, the Lead Worker can provide the family with a person working alongside them, who can potentially assist in the communication flows and improve the partnerships across the health-education nexus. The Lead Worker can be both a central point of contact and an advocate for the student and the family. This role can theoretically strengthen the support that the family receives by ensuring the smooth and timely flow of information around the network. In establishing a Lead Worker role in a collaborative network across the health-education nexus, it is clearly important to ensure that the patient privacy and confidentiality requirements of the Health system are appropriately addressed.

In this research, the Lead Worker role in both networks was taken by the MPS Community Co-ordinator, which is a position filled by a qualified social worker. Not every school has a staff member in such a role. If collaborative networks were to become the norm across the health-education nexus, consideration of who should fill the Lead Worker role would be required. It does not appear possible to recommend a specific role within the education system be responsible for fulfilling the part of a Lead Worker. If the student around which the network is formed is a regular attendee of a Hospital School, then there is potentially an argument for a Hospital School teacher to take on the Lead Worker role. However, as was the case in Mim’s


network, there are students in the ACT with significant illness who have no contact with the Hospital School. It is clearly inappropriate for a classroom teacher to take on a Lead Worker role, as their time and skills are better focused on their students’ educational development, rather than case management. Not every student with a significant illness or injury will have a learning support assistant (LSA), and LSAs may not have the skill set required to work across systems. Jael’s experience demonstrates that a person new to a school may struggle in a Lead Worker role, as the role demands a shared language and understanding of school and health practices.

In this short study, there was no opportunity to mentor and develop Jael in her Lead Worker role. Any future research in this area should consider how to improve the capacity of the Lead Worker to fulfil their role, and the impact of the Lead Worker on the success of the collaborative network.

Collaboration and Privacy One of the elements of concern raised by the ACT Health and Education representatives throughout this research was the issue of sharing information across the collaborative network. Both Health and Education staff appropriately spoke of requirements for approval to share information under the Information Privacy Act 2014 and the Health Records (Privacy and Access) Act 1977.

Formalised collaborative practice already existing in the ACT which has addressed the issues of information sharing includes the defined care teams which function in the nexus between health, education and child protection. The defined care teams are declared by the Director-General of a relevant ACT government agency where there is an ongoing need for various services and supports to work together to assist a child or young person and their family (Care & Protection Services, n.d.), and are thus information sharing entities under Chapter 25 of the Children and Young People’s Act 2008 (http://www.legislation.act.gov.au/a/2008-19/current/pdf/2008-19.pdf). There was no suggestion from the case study participants that a defined care team was an option for collaboration around Mim or Bina.

Findings There are several major findings from this case study, many of which echo previous research:

1. Collaborative practice within the health-education nexus requires deliberate action – collaboration is difficult to sustain without leadership, or without support from systemic policy and practice.

http://www.legislation.act.gov.au/a/2008-19/current/pdf/2008-19.pdf

http://www.legislation.act.gov.au/a/2008-19/current/pdf/2008-19.pdf


Collaboration is essentially an interpersonal process that requires the presence of a series of elements in the relationships between the professionals in a team. These include a willingness to collaborate, trust in each other, mutual respect and communication. Yet, even though the above conditions may be necessary, they are not sufficient, because in complex ... systems professionals cannot, on their own, create all the necessary conditions for success. Organisational determinants play a crucial role, especially in terms of human resource management capabilities and strong leadership (San Martin-Rodriguez, Beaulieu, D’Armour & Ferrada-Videla, 2005).

A detailed exploration of the need for systemic policy and practice is detailed in the Taking Responsibility: Review of Current Practice (Jackson, 2017). In summary, one of the reasons why successful collaboration across the health-education nexus in support of students experiencing non-negligible absence from school due to significant illness or injury still represents a considerable challenge to political decision-makers as well as to organisational managers (San Martin-Rodriguez et al, 2005) is the lack of appropriate policies and standards to support it. A lack of structure and direction for cross-sectoral collaboration is one element of a broader lack of policies and standards to minimise the educational disadvantage experienced by this cohort of students.

The participants in the case study recognised their interdependence and the areas where their practice overlapped (San Martin-Rodriguez et al, 2005). However, that recognition alone was insufficient to ensure successful collaboration. The participants demonstrated a high level of trust, mutual responsibility, and open lines of communication (Weinberg, Zetlin & Shea, 2009). They articulated the need for an agreed administrative structure to support collaborative operations and regular training and interaction opportunities to allow partners in the collaboration to share knowledge is well articulated in the research (ARACY, 2007).

Case study participants drew attention to the fact that different practices for areas such as confidentiality and information sharing can be barriers to inter-agency collaboration (ARACY 2007). Despite the best intentions and goodwill, the proposal to develop a shared understanding and process document was not able to be realised due to the time constraints of the research project. A contributing factor to this particular barrier to successful collaboration is well documented in the literature ‒ collaboration generally takes more time than non-collaborative work and timelines for collaborative projects must be flexible. (ARACY, 2007). The participants rated the face to face collaborations as the most effective, again reflecting findings in the literature that barriers to collaboration can be made


more manageable through clear, open and regular communication between collaborators at face-to-face meetings (ARACY, 2007).

The defined care teams which function in the nexus between health, education and child protection could be considered in any future use of collaborative networks across the health-education nexus.

2. The role of the Lead Worker is significant in the flow of communication within collaborative networks. It is inappropriate to expect a member of staff to successfully complete the Lead Worker role without appropriate mentoring, support and written guidelines.

Interprofessional collaboration can benefit, in particular, from the availability of standards, policies, and interprofessional protocols; unified and standardised documentation; and sessions, forums or formal meetings involving all team professionals (San Martin-Rodriguez et al, 2005).

The literature is replete with observations on the significance of a Lead Worker in cross-sectoral collaborations, and the need for that person to be supported in that role through clearly defined position statements, and appropriate supervisions and support (ARACY, 2007; Evans, 2013; San Martin-Rodriguez et al, 2005; Weinberg et al, 2009). The research participants clearly articulated the same points. Successful cross-sectoral collaboration in support of students experiencing non-negligible absence from school will require training programs and mentoring for the participants (ARACY, 2007), and particularly for the Lead Workers.

3. A child and family centred approach must be more than a transfer of workload from professionals to family members.

In planning our approaches, we need to start from the perspective of the whole child, focusing on what is required to ensure their overall wellbeing across all the dimensions of their lives rather than planning within established professional disciplines and service boundaries. We need to shift our thinking to see every child as a holder, in their own right, of an entitlement to services that will promote and maintain their wellbeing (ARACY, 2014).

There appears to be a significant disconnect between Bina’s family experience of child and family centred practice and the goals of such practice. This disconnect is also documented in the literature. Not only do doors open to those with the social capital to open them (Kidder, 2017), they are also potentially more likely to


open to those not encountering the chronic stress, severe fatigue, sleep deprivation and poorer physical and mental health experienced by parents of children with disabilities (Australian Institute of Family Studies, 2013).

Child and family-centred practice may have more potential to ensure parental advocacy and impact upon child well-being when there are appropriate systems of practice available across the health-education nexus to support the students and their parents. One example of such a system is a policy and standards hierarchy, as explored in Taking Responsibility: Review of Current Practice (Jackson, 2017).

4. Participatory research design is a tool which will assist in ensuring that the voices of children and young people are appropriately heard and understood. Without these voices, it is difficult for researchers and systems to truly understand their lived experience. Such a lack of understanding in turn can limit the ways in which researchers understand and systems design responses to problems and challenges.

Children and young people are experts in their own lives; they have experience and knowledge that is unique to their situation. As a result, they can tell adults things that adults don’t know, and change adult perspectives (NSW Commissioner for Children & Young People, 2012).

The approval process for conducting research in ACT schools did not encourage the use of participatory research design.

Recommendations There are several recommendations which arise from this case study.

Nothing about us w ithout us The low rate of return of the reflections highlights a potential challenge in research around students experiencing significant illness and injury, their families and the professionals who support them. The student voice and the Lead Worker voice are not well represented in the reflection data. While attempts were made to access information from the students involved, those attempts were unsuccessful. The return rate of the reflections is low, which suggests that the data collection tool used was not ideal. Jael (Lead Worker) provided specific feedback about the data collection tool for reflections being a barrier to its completion.

Meaningful inclusion of research participants who are facing challenging experiences around significant illness and injury may require the use of participatory research methods. Such research allows for the voices of children and their support teams to be heard through respectful engagement, building of trust and relationships, and


choice, flexibility and adaptability in research design, approach and implementation (ARACY & the NSW Commission for Children and Young People, 2009). Such methods require more time in the planning stages of research projects. Inclusive practice through the use of participatory research design is difficult to obtain when the research approval process requires detailed information regarding the data collection tools and processes.

Given that this case study was based in the ACT, it is not appropriate for this report to make recommendations regarding research approvals practices in other education jurisdictions.

Recommendation 1: I t is recommended that the ACT Education Directorate review its processes for research approvals in schools, to allow for the use of more inclusive research practices such as participatory design.

Policy and standards hierarchy A Policy and standards hierarchy details the hierarchy of legislation, principles, policy and standards. Tier One of the hierarchy is the laws, regulations and requirements, which provide the legal definitions and requirements. Tier Two explores the principles, providing core statements of commitment. Tier Three details the specific policy statements of intent – the political, managerial, financial and administrative mechanisms which provide support for the implementation of Tiers One and Two. Tier Four provides control specification of standards – statements and descriptions of how resources will be used, and details of the data reporting and review requirements. Tier Five explores the grassroots levels of know what, know how and show how.

The Taking Responsibility: Review of Current Practice clearly details the significance of a Policy and standards hierarchy in addressing educational disadvantage for students experiencing non-negligible school absence. In that review, it is apparent that there are multiple gaps in most jurisdiction’s Policy and standards hierarchies. (The results of the audit of Policy and standards hierarchies are included in Appendix One.) Those gaps have contributed to the difficulties in sustaining successful collaborative practice experienced by the participants in this case study, through the absence of established guidelines, policies and practices. Additionally, the absence of established guidelines, policies and practices has contributed to parent fatigue in managing their child’s condition, and in limiting the success of child and family-centred practice.


Recommendation 2: I t is recommended that Australian educational jurisdictions review their Policy and standards hierarchy to develop policies, procedures and standards for minimising the impact of school absence for this cohort, including the development of collaborative processes and details of the data reporting and review requirements.

Collaboration across the health-education nexus While the research questions which underpin this research have not been satisfactorily answered, it is clear that there is some value in collaboration across the health-education nexus. Such collaboration can impact the thought processes and practice of medical professionals such as Eerika (Psychologist), making them more aware of their capacity to collaborate with educators. It can also assist educators and families in improving the support structures around students experiencing significant illness or injury. Having experienced formal collaboration across the health-education network, none of the participants in this research were willing for the collaboration to stop.

However, collaboration across the health-education nexus cannot be left to happen on its own. Meaningful collaboration needs structure, and clarity of purpose.

Recommendation 3: I t is recommended that state and territory education and health jurisdictions formalise the establishment of collaborative networks as part of family centred care and practice for all students experiencing significant illness or injury.

• Such networks must be established through a Memorandum of Understanding between the Education and Health Departments, and a joint framework and set of policies must guide their implementation.

• Privacy and confidentiality must be appropriately addressed in these policies and guidelines, as currently managed in the ACT defined care teams in the health, education and child protection nexus.

• Visual representations of communication flows w ithin collaborative networks may assist the members of the networks in their collaborative practice.

• In instances where students receive treatment in a jurisdiction other than their home base, cross-jurisdictional networks are required.

This research has been unable to successfully explore the issue of initiation of collaborative conversations, and the direction of the flow of information across the networks.


Recommendation 4: I t is recommended that further research into communication w ithin collaborative networks across the health-education nexus explore who init iates collaborative conversations, and how conversations flow across the networks.

Lead Workers The role of the Lead Worker is central to the flow of communication within collaborative networks. It is also apparent that it is inappropriate to expect a member of staff to successfully complete the Lead Worker role without appropriate mentoring and support.

Recommendation 5: I t is recommended that collaborative networks across the health-education nexus in support of students w ith significant illness or injury include a Lead Worker.

• Mentoring, support, and w ritten guidelines must be provided for the individuals taking on the Lead Worker role.

Conclusion “Communication, relationships and connection” (Mary (Hospital School Teacher), 13 February 2017) are pivotal for the successful management of educational disadvantage created by absence from school due to significant illness or injury. Communication across the health-education nexus through the establishment of formal collaborative networks has the potential to build trust and understanding in relationships between health and education professionals, and the families they seek to support. Through these trusting and supportive relationships, children and young people with significant illness and injury may have more opportunities to connect with their schools and their learning.

While this limited piece of research cannot hope to answer all of the questions or solve all of the problems around school connection for students with significant illness or injury, it does demonstrate that collaboration across the health-education nexus is possible. Such collaboration can impact upon practice, and through the practice of health and education professionals, students with significant illness and injury can have hope for “good outcomes in the future” (Margaret (Mother), 4 April 2017).


Appendix One

Summary of Policy and standards hierarchy mapping National ACT NSW NT QLD SA TAS VIC WA

Tier One √ √ √ √ √ √ √ √ √

Tier Two √ √ √ √ √ √ √ √ √

Tier Three √

?

? √

Tier Four

? √

Tier Five N/A ?

? √


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Taking responsibility: Preventing educational disadvantage ......Date Updated . Comments . 1.0 . May 2017 ; Released to client, Project Advisory Group and Critical Friends for comment