Chronic illness peer support program - The Royal Children's Hospital

PREMIER’S EXCELLENCE AWARD ENTRY
Premier Excellence Awards honour initiatives at the forefront of health improvement, in the priority
areas identified by the Premier of Victoria. In 2010 these are
• tackling chronic disease and improving public health
• improving cancer care in Victoria.
Organisation
The Royal Children’s Hospital, Melbourne
Entry contact person
Professor Susan Sawyer, Director, RCH Centre for Adolescent
Health
Email
Susan.sawyer@rch.org.au
Telephone 9345 5522
CEO endorsed
Yes
Which Premier’s Excellence Award are you entering?
• Tackling chronic disease and improving public health
• Improving cancer care in Victoria
Tick one Award
Title of entry
Tackling chronic disease and improving public health
Has this initiative previously been commended or
won a Victorian Public Healthcare Award (Y/N)
Abstract
No
No
Over 17 years, The Royal Children’s Hospital (RCH) Chronic Illness Peer Support Program
(ChIPS) has helped hundreds of young people come together in a model of youth participation to
share common experiences, learn from each other and engage in leadership roles that enable
them to cope better with a chronic disease in adolescence
ChIPS was established to respond to the substantial burden of disease in this cohort who, in
‘feeling different’ and missing out on various social and school activities because of a chronic
illness, experience greater social isolation, poorer self esteem and higher rates of mental disorder
than their healthy peers.
ChIPS is unique in its focus on adolescents and inclusion of young people with different chronic
conditions within the same program.
In 2009, a new program element was established to expand the program’s reach. Evaluation has
shown positive benefits, and a striking increase in the number of participants from rural and outer
metropolitan regions or whose health circumstances had previously prevented their participation.
Health professionals, families and young people report improved social, emotional and physical
wellbeing. Formal program evaluation shows reduced social isolation, improved self-efficacy, selfconfidence
and insight. To quote one member, ‘I look at things differently now’.
Planning and preparation

A significant proportion of patients at the RCH are adolescents aged 12-19 with severe chronic
disease and disability. This ranges from common conditions such as diabetes to rare genetic
conditions. Proportionally, more adolescents than children have chronic conditions.
In 1993, the Centre for Adolescent Health identified that the social and emotional needs of a
number of adolescent patients with severe chronic illness were not being met by traditional health
care models. Many experiences were identified, such as social isolation, that were common
across different diagnoses.
Consultation with adolescents with chronic illness, a literature review and expert opinion led to the
development of a “peer support” group program to address these needs by accessing support
from similar aged peers.
Objectives
The ChIPS program aims to reduce the overall burden of disease and enhance the health and
well being of young people living with significant chronic illness, helping them to
Better adjust to life with a chronic illness;
Develop a range of personal abilities;
Increase their sense of control over their health;
Become more active in their community.
A youth participation approach ensures that ChIPS is patient-centred, with a consumer focus
underpinning every aspect of the program.
Methods and implementation
Following this process, we invited a small group of adolescents with a variety of chronic illnesses
to attend a weekly evening pilot group for eight weeks. Through discussion and activities, this
group shared experiences and learned from each other. Feedback was overwhelmingly positive,
with co-facilitation of each group by a young person with a chronic condition identified as a critical
success factor. The group program commenced!
A recurrent theme from our evaluation was interest in maintaining contact after the group ended.
As a result, social activities were organised for past group participants, with young people who
participated in these activities known as ChIP–ERS (Education, Recreation, Social)
Leadership training was then provided for participants to support them organising social activities
and running the groups.
A youth Reference Committee was established which effectively overseas the program, informing
all aspects including the planning and delivering of activities via working groups, and engaging
with the broader community through public speaking and newsletters. Working groups are
assisted by mentors (volunteers with an interest in young people and chronic illness).
In response to the Reference committee, the ChIPS program has grown into a major program of
the RCH that now features:
Peer support groups
Quarterly social activities
Annual camps
Leadership training
Reference Committee
In the past two years an additional pathway has been introduced – the two day “ChIPS
Intensives”. Analysis of our referrals from mid 2006 through 2008 showed that about 1 in 5 did not
proceed with the program because of living too far away, because the nature of their condition

limited their ability to attend a weekly group or because of their inability to function in a weekly
social environment.
Two Intensives were trialled in 2009, that over 2 days aimed to replicate the experience of the 8
week Group. Accommodation was provided to further increase access. Two more Intensives have
been conducted in 2010, which have now become integral to ChIPS.
Results and outcomes (see supporting document)
Feedback is sought from all participants in Groups, Intensives and camps which contributes to a
constant cycle of improvement. The Reference Committee ensures that young people who have
experienced the various aspects of the program provide critical feedback.
Pre- and post-evaluation of participants and parents are powerful, indicating that both group
programs
Reduce social isolation;
Build leadership skills; and
Provide opportunities to explore positive solutions to living with a chronic illness during
adolescence.
One mother recently commented, ‘[My daughter] came out of the group session glowing and for
the first time in her life felt she had found her ‘tribe’. One adolescent recently summed it up by
simply saying, ‘It was brilliant’.
Over 420 young people with significant chronic illness have passed through the Groups during the
life of the program, with a current membership list of 130. In the 18 months since the first
Intensive, 40 new participants have joined. We have now conducted 4 Group Intensives, whose
participants lived an average of 82 kilometres away. By comparison the participants of the 4 Eight
Week Groups conducted at the same time lived an average of 18 km away.
Graduates of both programs are actively engaging in subsequent activities such as social events,
life skills workshops, newsletter production, the annual camp and the Reference Committee;
participation in these activities is less influenced by geography and disease-related concerns.
The Centre for Adolescent Health is currently undertaking a detailed research study of the ChIPS
program. Using both quantitative and qualitative methods, parents, young people and
stakeholders are informing this evaluation.
Status and sustainability
Through the cycle of youth participation, the program is self-sustaining, with a proportion of group
participants remaining active in the planning and delivery of future activities.
ChIPS is funded through a combination of government (Department of Planning and Victorian
Development) and philanthropic funding. It is now an integral component of the RCH’s care of
adolescents with chronic conditions, run by the Centre for Adolescent Health.
Achieving quality, excellence, innovation
The promotion of self-management in adults with chronic disease is an established feature of the
health policy landscape. However, despite the prevalence of severe chronic disease in
adolescents, remarkably few programs have been developed to support the self-management
capacity of adolescents with chronic conditions, who we have shown benefit greatly from the
social inclusivity and leadership experiences of a peer support program.
The dominant adult model of self management support is disease-specific (eg cancer, arthritis,
diabetes). ChIPS is unique in welcoming young people with different conditions, who we have
shown have far more similarities than differences in being a teenager with a chronic condition.

The generic aspects of ChIPS makes it widely applicable, catering for both rare and common
conditions, as well as multiple disorders.
The quality and innovation of ChIPS has been recognised through various awards and by seeding
other ChIPS programs nationally and internationally (Sydney, London, Vancouver).
ChIPS stands out as a program that is built on a model of consumer engagement through youth
participation. Continuous evolution has been a feature which reflects the strength of the model.
In recognising a number of barriers to the 8-week Group, we set out to promote greater access.
The Intensive is great value for money; directing the equivalent of 25% of the ChIPS budget to the
Group Intensive translated to a 100% increase in new participants over eighteen months. The
development of the ChIPS Intensive is another innovation within a wider program that has long
represented quality, excellence and innovation.
References
References resulting from the program
Publications that specifically describe the ChIPS program
1. SM Sawyer, C Olsson (1999). ‘Supporting young people with chronic illness’. The Australian
Paediatric Review;9:2-3.
2. C Olsson, SM Sawyer, M Boyce (2000). ‘Do young people with chronic illness have special
needs?’ Australian Family Physician;29(1):1-2.
3. C Olsson, L Bond, MW Johnson, DL Forer, MF Boyce, SM Sawyer (2003). ‘Adolescent
chronic illness: a qualitative study of psychosocial adjustment’. Annals of the Academy of
Medicine Singapore;32:43-50.
4. CA Olsson, M Boyce, JW Toumbourou, SM Sawyer (2005). ‘Chronic illness in adolescents:
the role of peer support groups’. Clinical Child Psychology and Psychiatry; 10:78-87.
5. M Yeo, SM Sawyer (2005). ‘Chronic illness and disability’. In, ABC of Adolescence. Editor, R
Viner. BMJ Books:16-18.
Publications on chronic illness in adolescents that refer to the importance of peer support
programs such as ChIPS or that reflect the learnings gained from ChIPS.
6. SM Sawyer (2003). ‘Developmentally appropriate health care for young people with chronic
illness: questions of philosophy, policy and practice’. Pediatric Pulmonology; 36(5):363-5.
7. M Yeo, S Sawyer (2005). ‘Chronic illness and disability’. British Medical Journal;330:721-723.
8. Sawyer SM and Aroni RA (2005). ‘Self-management in adolescents with chronic illness. What
does it mean and how can it be achieved?’ Medical Journal of Australia; 405-409.
9. SM Sawyer, S Drew, M Yeo, M Britto (2007). ‘Adolescents with a chronic condition:
challenges living, challenges treating’. Lancet; 369(9571):1481-9.
10. SM Sawyer, S Drew, R Duncan (2007). ‘Adolescents with chronic disease: the double
whammy’. Australian Family Physician;36:2-6.
11. SM Sawyer (2008). ‘In search of quality care for young people with chronic conditions’.
Journal of Paediatrics and Child Health;44(9):475-477.
Electronic media
12. Video for parents. B Tilden (2000). Working with your teenager to manage their medical
condition. Educational video for parents of young people with a chronic condition. Educational
Resource Centre, Royal Children’s Hospital.
13. SM Sawyer, J Proimos (2001). Adherence in chronic illnesss: young people tell it as it is.
Educational video for health professionals (Education Resource Centre, Royal Children’s
Hospital).