Child Illness Resilience Program: Summary of outcomes

Child illness Resilience Project:
Summary of Outcomes

CHiRP: Reducing risk factors and promoting family
strength and resilience
Child illness Resilience Project: Summary of Outcomes
The Child illness Resilience Project (CHiRP) is an evidence-based mental
health promotion and illness prevention program for families and carers of
children and young people living with a chronic illness in Australia.
CHiRP is an initiative of the Hunter Institute of Mental Health in Newcastle
and was developed and implemented in partnership with the
Greater Charitable Foundation , John Hunter Children’s Hospital and
the Kaleidoscope Children’s Network.

Facts about childhood illness and impact
on families

Child illness Resilience Project: Summary of outcomes
Facts about childhood illness and
impact on families
Two in five Australian families have
a child or young person (aged 0-14
years) living with a chronic illness.
Chronic illness can include asthma,
diabetes, cystic fibrosis,
musculoskeletal and inflammatory
disorders and gastroenterological
disorders.

impact on families
A chronic illness is defined as:
• prolonged in duration;
• does not resolve spontaneously;
• rarely cured completely.

impact on families
Family members living with a childhood chronic illness are at
greater risk of developing mental health issues, such as
depression and anxiety.

impact on families
Chronic illness and associated symptoms can affect the
physical, social and emotional development of children and
young people. This leaves them more at risk of developing
issues such as:
• low self-esteem;
• poor social skills;
• social isolation;
• challenging behaviour;
• substance use;
• risky behaviour; and
• depression and anxiety.

impact on families
The ability to adjust to
change in healthy ways, by
building on strengths and
calling on available resources
is referred to as family
resilience. Resilient and well
families can be healthier, feel
happier and can cope better,
even during tough times.

impact on families
There are very few services or programs aimed at supporting the
mental health and wellbeing of carers and family members of the
child or young person with a chronic illness.

impact on families
Child mental wellbeing has been associated with:
• positive parenting;
• open parent-child communication;
• the inclusion of siblings in information sharing;
• parental support for older children or young people to manage
their illness and symptoms; and
• parental encouragement of children to engage in relaxation
activities.

impact on families
Improved medical outcomes can be achieved through programs
that support the mental health and wellbeing of parents and
families with children and young people living with an illness.

impact on families
Mental health prevention
programs for this vulnerable
population are recommended,
such programs have the capacity
to prevent the onset/severity of
future mental health problems.

Key Strategies of CHiRP

AIM: To promote the resilience and mental health of families of
children and young people living with a chronic illness.
RESOURCE DEVELOPMENT: Evidence-based, family-centred mental
health promotion and illness prevention resources for parents or
carers of children and young people with a chronic illness.
COLLABORATION: Working with the John Hunter Children’s Hospital
to develop an effective way of helping children with chronic illness
and their parents and siblings to do well, despite the experience of
chronic illness.

PROGRAM DEVELOPMENT: Working with families and professionals from the
John Hunter Children’s Hospital and Kaleidoscope to develop resources and a
program to support family mental health, resilience and wellbeing.
Including to:
• Provide information about common feelings and concerns in this situation;
• Provide information about the importance of resilience and mental health;
• Acknowledge and help parents/families to manage distress and difficult
feelings;
• Encourage the use of helpful family strategies to promote resilience and
wellbeing; and
• Provide information about finding additional support in the community if
needed.

DISSEMINATION: A multi-stage dissemination strategy applicable to
families of children and adolescents living with a chronic illness in the
Hunter New England Local Health District.
RESOURCE EVALUATION: The examination of the efficacy and
acceptability of the resource in promoting resilience and wellbeing of
families of children and young people living with an illness.

Resource Development

CHiRP resources were developed to be sustainable, while
retaining relevancy to families of children and young people
living with chronic illness and with the potential to expand to a
national audience.
The final products developed included the Family Resilience
Factsheet, the Family Resilience and Wellbeing Booklet: Strong
Parents, Resilient Families, and a range of supplementary
materials and information including an online Information
Support Group.

The resources were designed to be:
• For families of children and adolescents living with a chronic
illness;
• Focused on children or adolescents between birth to 18 years
who are living with a chronic illness;
• Not specific to any one chronic illness;
• Relevant and sensitive to the needs of the Australian
population.

Family Resilience Factsheet
The Family Resilience Fact Sheet is a double-sided, A4 page
that provides brief information and strategies to improve
family resilience and wellbeing. The content was developed
based on information obtained from focus groups; reviews
of current literature; and consultation with a local expert
working group.
The Family Resilience Fact Sheet was routinely provided to all the families with
a child admitted of the John Hunter Children’s Hospital. This ensured that these
children and families had access to information on family resilience and mental
health without adding to the workload of clinicians.

Family Resilience and Wellbeing Booklet
The Family Resilience and Wellbeing Booklet includes information and
activities designed to teach families a range of strategies to improve family
resilience and wellbeing.
The Family Resilience and Wellbeing Booklet was distributed
to consenting families attending selected outpatient clinics
providing services to children/ young people with a chronic
illness. The families were provided with the booklet and
information about the project. The booklet was designed to be
used by families in a self-directed, independent manner.

Information Support Group
Families who received the Family Resilience and Wellbeing Booklet, and
were identified as experiencing high levels of psychological distress on their
three month survey, were invited to join an online information support
group. The support group provided information on family resilience,
practical activity and an opportunity for peer support and interaction.
Fact sheets, activities and podcasts
13 fact sheets were developed to supplement the Family Resilience and
Wellbeing Booklet. These fact sheets, along with activities and podcasts, are
available on the CHiRP section of the Hunter Institute of Mental Health
website.

Summary of Outcomes

Summary of Outcomes
Distribution of resources
Family Resilience Fact Sheet
1,438 fact sheets were distributed to families receiving paediatric care
across five different Hunter New England district hospitals.
The Family Resilience and Wellbeing Booklet, was disseminated to parents
of children and young people who attended the Gastroenterology, Cystic
Fibrosis, Rheumatology and Diabetes outpatient clinics at the John Hunter
Children’s Hospital.

Summary of Outcomes
A total of 159 families received the booklet, with 47 families responding to a
three month follow-up survey and 44 families responding to a six month
follow-up survey.

Summary of Outcomes
Families who responded reported that they found the most popular
strategies to be:
• Spending time together as a family;
• Honest and clear communication;
• Maintaining family routines.

Summary of Outcomes
Suggestions for alternative ways to distribute resources included:
• Online/via email;
• At time of diagnosis or admission;
• Via social workers;
• Library (also accessible to extended family);
• At clinics or on the wards;
• In GP waiting rooms or other services.

Summary of Outcomes
Other feedback

Summary of Outcomes
In their own words parents and carers said…
“This is an important resource,
especially for families with a new or
recent diagnosis.”
“… it helped us to listen to each other;
think of others’ feelings.”
“… just makes you stop and
acknowledge how things are and how
some small changes put into practice
can have a positive impact.”

Summary of Outcomes
What did we learn from our consultations and collaboration?
• 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.

Summary of Outcomes
Knowledge translation, communication and promotion
A significant component of the CHiRP project involved communicating and
sharing information with other likeminded organisations and with the
broader community.
Several strategies were used to engage stakeholders and the general public.
For example published 30 Facebook posts, garnering 1,499 likes and over
48,000 engagements.

What we learnt

What we learnt
Key lessons from the project:
• Although there are common themes, the journey through diagnosis,
treatment and management is different for each family;
• Time is a limited resource. Providing a resource that families could use
at a time of their choosing was a useful feature;
• Communication and problem-solving appear to be strategies that are
particularly useful, as well as tools for generating discussion and
exploring emotions;
• The applicability, usefulness and effectiveness of this material extends
beyond the immediate target group of this project.

What we learnt
CHiRP contributed to the improvement of outcomes for families
with children with a chronic illness through four main mechanisms:
1. Increased awareness and acknowledgement of mental health and
family resilience. The project has served to focus and engage
communities, families, researchers, practitioners, service providers,
and advocates on the role of family resilience in wellbeing. In
particular the important role resilience building activities play in
supporting families including a child with chronic illness.

What we learnt
2. The development of a practical strength-based resource for the
empowerment of families. The CHiRP resources provided families
with information, tips, tools, and strategies for supporting the health
and wellbeing of the family unit. These materials were designed so
families would be able to identify both their strengths and their
areas of need.

What we learnt
3. Increased understanding of family resilience and the issues facing
families with children with a chronic illness. Through scholarship,
presentations and research the project has contributed to moving
our understanding of needs of families and how best to support
them from anecdote towards a deeper evidence base.
This will contribute to the next generation of interventions by giving
us a more detailed picture of the needs of families, what types of
resources would be helpful and how we would be able to provide
these material to families in an ongoing way.

What we learnt
4. The project and resources have created the opportunity to build
partnerships. The CHiRP resources have been identified by key
stakeholders and partners as having a broad applicability to
supporting families.
CHiRP has the capacity to continue to grow and contribute to building
family resilience beyond this project. The booklet has been seen as a
readily adaptable and useable resource to address a wide
range of challenges.

Next steps

Next steps
Based on the feedback received and consultation the CHiRP
team plan to:
• Explore opportunities to co-create further content with families
and clinicians;
• Scope the development of an online portal, tools and training;
• Extend the audience of CHiRP beyond families with a chronic
illness to be inclusive of other families who are facing challenges
or risks to their resilience;
• Explore options for online training for health professionals in the
use and dissemination of CHiRP;

Next steps
• Extend the geographical reach of CHiRP beyond the Hunter New
England region;
• Partner with other organisations to trail the efficacy of CHiRP in
alternative settings, for example in community services rather
than in the hospital setting;
• Have CHiRP integrated into existing resilience training;
• Explore options for developing the existing materials into online
modules or an app for families to access and complete;
• Develop measure of family resilience.

Acknowledgments

Acknowledgments
The CHiRP project team would like to thank the Greater Charitable
Foundation for their funding and support towards the Child illness Resilience
Project.
The team acknowledges the support from the John Hunter Children’s
Hospital, and the Kaleidoscope Children’s Health Network.
The team would also like to thank the CHiRP reference group members for
their contributions and the Hunter Institute of Mental Health project staff.

Acknowledgements
THANK YOU!
We would like to acknowledge the involvement
of families with the project who have
contributed their valuable time in providing
invaluable feedback on their experiences and
the way in which we can better support them to
be resilient and healthy.

Child Illness Resilience Program: Summary of outcomes

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Child Illness Resilience Program: Summary of outcomes