Children and adolescents with a chronic illness are more likely to develop social, behavioural or mental health problems such as:Families living with a childhood chronic illness are at greater risk of:developing mental health issues, such as depression and anxietyexperiencing persistent levels of stress and worry associated with their support roleliving with a chronic illness
National Reference group – AASW, APS, Carers Australia, RACP, Siblings Australia, Greater Charitable Foundation
This pilot matches the type of program that the HIMH is well known for.
The common themes among every group wereImportance of age appropriate social supports*Maintainence of family routinesSelf care and time out activities on own and with peersGood communication across whole familyAge and developmentally appropriate self management skills and information
Gabrielle Murphy - ChiRP Program
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:
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 ofchildren and adolescents living with a chronic illness by promoting theresilience and psychological wellbeing of families of children and adolescentsliving with a chronic illnessLength of trip: 6 months into a 3 year projectMap 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 andfamilies of children and adolescents living with childhood chronic illness (includingsiblings)Phase 2: To develop an acceptable evidence based family resilience resource („theresource‟) for families of children and adolescents living with a chronic illness, based onliterature and the experiences of the intended recipients.Phase 3: To disseminate „the resource‟ to families of children and young people livingwith a chronic illness following a recent admission / visit to the John Hunter Children‟shospital 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 itseffectiveness for meeting the aims of the pilot program.Phase 5: To develop a final resource and dissemination strategy that is applicable forfamilies of children and adolescents living with a chronic illness on a national scale.
The specs and support crewThe vehicle: Greater Foundation‟s inaugural community grant to develop, trialand evaluate a pilot program exploring family resilience and wellbeing.The region: funded for Hunter New England LHD, but it will be made relevantand sensitive to the needs of the Australian population to allow it to be rolledout 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.
Phase 1: Evidence Base: Commissioned Literature reviewTitle: 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 FlowersKey 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: Literature review key findingsKey factors associated with parents enhancing own wellbeing:• Good social support • Maintaining normalcy/routines • Engaging in self careactivities (relaxation, hobbies, nutrition, exercise) Good family cohesion •Understanding and acceptance of illness • Examining beliefs about illness •Problem solving skills • Open communication • Emotional regulationstrategies • Positive spousal relationship • Paternal involvementKey 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 inrelaxing/distracting activities • Parents managing their own distress
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 familycommunication • Peer supportKey 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 therapySibling 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 theresource)All Paediatric discharge summaries to include a family resilience statement andautomatically 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. Itwill be generalist in nature.
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
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 memberFamily informed about CHiRP project – in height and weight room by CHiRP staffConsent 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
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 timePlease 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