A presentation given by Gabrielle Murphy at The Journey, CHA Conference 2012, in the 'Innovations in Mental Health Care for Children and Young People' stream.

2. Child Illness and Resilience Program
“Childhood chronic illness: A journey to build
family resilience and wellbeing”
Presented by: Gabrielle Murphy (Senior Project Officer, HIMH)
Todd Heard (Program Manager, HIMH
Funded by: Supported by:

3. Why take this trip anyway?
• Childhood chronic illness affects approx. 15% of Australian families
• Children and adolescents with a chronic illness are more likely to develop
– low self-esteem
– poor social skills
– challenging behaviour
– drug or alcohol abuse
– depression and anxiety
• Families living with a childhood chronic illness are at greater risk of:
– experiencing persistent levels of stress and worry
– developing mental health issues
• Good parent mental health wellbeing and family resilience is a protective
factor for the onset of mental illness during childhood
• Improved medical outcomes can be achieved through programs which
support families‟ mental health and wellbeing

4. The destination:
Aim of the CHiRP pilot is to prevent the onset of mental illness in families of
children and adolescents living with a chronic illness by promoting the
resilience and psychological wellbeing of families of children and adolescents
living with a chronic illness
Length of trip: 6 months into a 3 year project
Map limitations:
Within the CHiRP context a childhood chronic illness is
– prolonged in duration
– does not often resolve spontaneously
– one that is rarely cured completely
– examples: diabetes; cystic fibrosis, severe asthma and other respiratory
problems.
For the purpose of the current program, a primary diagnosis of an intellectual
disability or mental illness are excluded from the current definition.

5. The five phases of the CHiRP journey
Phase 1: To identify the literature base and explore the experiences of carers and
families of children and adolescents living with childhood chronic illness (including
siblings)
Phase 2: To develop an acceptable evidence based family resilience resource („the
resource‟) for families of children and adolescents living with a chronic illness, based on
literature and the experiences of the intended recipients.
Phase 3: To disseminate „the resource‟ to families of children and young people living
with a chronic illness following a recent admission / visit to the John Hunter Children‟s
hospital in the HNELHD. Includes training for local staff in resilience-based care.
Phase 4: To examine the efficacy of „the resource‟ in terms of its acceptability and its
effectiveness for meeting the aims of the pilot program.
Phase 5: To develop a final resource and dissemination strategy that is applicable for
families of children and adolescents living with a chronic illness on a national scale.

6. The specs and support crew
The vehicle: Greater Foundation‟s inaugural community grant to develop, trial
and evaluate a pilot program exploring family resilience and wellbeing.
The region: funded for Hunter New England LHD, but it will be made relevant
and sensitive to the needs of the Australian population to allow it to be rolled
out nationally at a later date (if appropriate).
The co drivers and support crew:
• Kaleidoscope: HNELHD‟s umbrella organisation for children and young
people‟s health services.
• EDuCare: Funded by HNELHD to provide practical support and education
to carers in group settings. Recruiting some focus group participants and
will develop a group program along lines of resource and pilot findings.

7. Phase 1: Evidence Base: Commissioned Literature
review
Title: Supporting mental health, resilience and wellbeing in families experiencing a
childhood chronic illness: A synthesis of current evidence to support the Childhood
Illness Resilience Program.
Authors: A/Professor Harriet Hiscock, Dr Lauren Williams, Dr Emily Incledon, Ms
Alexandra Flowers
Key findings in four main areas:
The key factors associated with:
– parents enhancing own wellbeing
– parents enhancing their child‟s wellbeing
– parents enhancing sibling wellbeing
– child enhancing own wellbeing

8. Phase 1: Literature review key findings
Key factors associated with parents enhancing own wellbeing:
• Good social support • Maintaining normalcy/routines • Engaging in self care
activities (relaxation, hobbies, nutrition, exercise) Good family cohesion •
Understanding and acceptance of illness • Examining beliefs about illness •
Problem solving skills • Open communication • Emotional regulation
strategies • Positive spousal relationship • Paternal involvement
Key factors associated with parents enhancing their child’s wellbeing:
• Maintaining routine/structure •Encouragement of age-appropriate self-
management (e.g. medication; stress-reduction activities Providing age-
appropriate information about illness ) • Positive maternal communication
•Positive family environment • Peer support • Encouraging engagement in
relaxing/distracting activities • Parents managing their own distress

9. Phase 1: Literature review key findings (continued)
Key factors associated with parents enhancing sibling wellbeing:
•Providing age-appropriate information • Emotional support and validation
• Maintaining daily routine • Equitable parenting • Open and positive family
communication • Peer support
Key factors associated with child enhancing own wellbeing:
• Peer support (e.g. attending camps) • Open communication • Relaxation,
distraction, developing new interests • Having a mentor/role model • Group therapy
Sibling paper currently being prepared for journal submission

10. Phase 1: Listening to the locals
• Focus groups with the intended recipients of the resource, including:
• Parents and/or carers of a child/adolescent living with a chronic illness.
• Young people 12-18 years who are living with a chronic illness
• Siblings (aged 12-18 years) of children and young people living with a
chronic illness
• National Reference group
– Australian Psychological Society
– Australian Association of Social Workers
– RACP – Paediatrics and Child Health
– Department of Health and Aging (DOHA)
– Childrens Healthcare Australasia
– Carers Australia
– Siblings Australia
– Indigenous Allied Health Workers Association
• Local Operational Working Group – key stakeholders in the area with input
into the practicalities of how to disseminate resources
• Local working party – interested clinicians to help guide the resource
development

11. Phase 2: Making the map (developing the
resource)
All Paediatric discharge summaries to include a family resilience statement and
automatically generate a printed fact sheet to be included with copy sent home.
The „Inpatient factsheet‟ and „Family resilience resource‟ are likely to include:
• the importance of resilience, wellbeing and mental health;
• practical evidence-based strategies to help parents and carers
– manage their own level of psychological distress
– identify and manage their family‟s level of distress
• helpful family and parenting strategies to promote resilience and minimise
psychological distress;
• information about finding additional support in the community, if needed.
The resource package will not be specific to any one chronic illness.
The resource will be culturally sensitive, but not culturally specific or tailored. It
will be generalist in nature.

12. Phase 3 – Targeted Dissemination
Identification of a dissemination strategy to target children and families
living with childhood chronic illness
Something which could be replicated in other settings
Ensuring it is able to be rigorously evaluated and possibly replicated
Identified several chronic illness clinics in outpatient setting
• Gastroenterology, Diabetes, Cystic Fibrosis and Rheumatology
• Other community based clinics being identified
Workforce development sessions on „Family Centred Care‟ with
• Ward nurses – very brief and targeted
• Clinical Nurse Consultants/Specialists (more detailed)
• Allied Health staff (more detailed)
• Aims to build the workforce capacity to identify and foster resilience in
the patient group and the staff

13. DISSEMINATION STRATEGY
Routine Delivery:
Paediatric Discharge Summary – brief resilience message and clinical family resilience fact sheet
Targeted Dissemination:
Child and family attend Outpatient Clinic at JHCH
Eligible/targeted clinic Other outpatient Exit
Gastroenterology, Diabetes, CF and Clinics
Rheumatology
Parent/carer presents to outpatient desk
Given information sheet to prepare them for No Consent Exit
meeting a CHiRP staff member
Family informed about CHiRP project – in height
and weight room by CHiRP staff
Consent gained – family receive baseline survey
and resource
Follow up – CHiRP team follow up family in 3
Complete baseline survey in waiting room. months for feedback on resource, invitation to focus
CHiRP member will collect completed survey group, edUcare group and follow up survey

14. Phase 4 and 5 of the journey
• The ultimate route is roughly sketched out but specific itinerary not
confirmed.
• Phase 4 will involve evaluation of the resource and its effectiveness
for meeting the aims of the pilot program.
• Phase 5 will be to develop a final resource and dissemination
strategy that is applicable for families of children and adolescents
living with a chronic illness on a national scale.

15. What we’ve learned on this journey already
• Families are strong and function to the best of their ability
• Families have routines in place
• Parents are often aware of the needs of siblings, but struggle to find
balance
• Families want to be able to cope on their own
• Families struggle most with a “pile up of stressors” or when they
don‟t get a chance to recover from one stressor before they are hit
with another.
• Information and advice at key points is more valuable to them than a
constant drip-feed of information (but those time points are different
for different families)
• Many families stumble across information and resources by
accident, not by a coordinated approach from clinicians

16. Any Questions? Comments?
Thanks for your time
Please feel free to email Gabrielle or Todd with any
further thoughts or questions
Gabrielle.Murphy@hnehealth.nsw.gov.au
Todd.Heard@hnehealth.nsw.gov.au