Funded by: Supported by:

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

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

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.

The five phases of the CHiRP journeyPhase 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.

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.

The specs and support crew

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

Phase 1: Evidence Base: Commissioned Literature review

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

Phase 1: Literature review key findings

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

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

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.

Phase 3 – Targeted Dissemination Identification of a dissemination strategy to target children and families living with childhood chronic illnessSomething which could be replicated in other settingsEnsuring it is able to be rigorously evaluated and possibly replicatedIdentified 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

Child and family attend Outpatient Clinic at JHCHChild and family attend Outpatient Clinic at JHCH

Eligible/targeted clinicGastroenterology, Diabetes, CF and

Rheumatology

Eligible/targeted clinicGastroenterology, Diabetes, CF and

Rheumatology

Other outpatient Clinics

Other outpatient Clinics

ExitExit

Parent/carer presents to outpatient deskGiven information sheet to prepare them for

meeting a CHiRP staff member

Parent/carer presents to outpatient deskGiven information sheet to prepare them for

meeting a CHiRP staff member

Family informed about CHiRP project – in height and weight room by CHiRP staff

Family informed about CHiRP project – in height and weight room by CHiRP staff

Consent gained – family receive baseline survey and resource

Consent gained – family receive baseline survey and resource

No ConsentNo Consent ExitExit

Complete baseline survey in waiting room. CHiRP member will collect completed surveyComplete baseline survey in waiting room. CHiRP member will collect completed survey

Follow up – CHiRP team follow up family in 3 months for feedback on resource, invitation to focus

group, edUcare group and follow up survey

Follow up – CHiRP team follow up family in 3 months for feedback on resource, invitation to focus

group, edUcare group and follow up survey

Paediatric Discharge Summary – brief resilience message and clinical family resilience fact sheet

Targeted Dissemination:

Routine Delivery:DISSEMINATION STRATEGY

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.

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

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.auTodd.Heard@hnehealth.nsw.gov.au