child illness resilience program: summary of outcomes

Child illness Resilience Project: Summary of Outcomes

CHiRP: Reducing risk factors and promoting family strength and resilience


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


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.




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




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




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.




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.




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.




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.





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.




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 FactsheetThe 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 BookletThe 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 distributedto consenting families attending selected outpatient clinicsproviding services to children/ young people with a chronicillness. The families were provided with the booklet and information about the project. The booklet was designed to beused by families in a self-directed, independent manner.




Information Support GroupFamilies 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.

Family Resilience and Wellbeing Booklet 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


Family Resilience and Wellbeing Booklet 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


Family Resilience and Wellbeing Booklet 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


Family Resilience and Wellbeing Booklet 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

Health & Medicine