A mixed methods trial of a family-based, parent-led intervention to improve resilience and wellbeing of families living with a childhood chronic illness.
Improving the well-being and resilience of families of children and adolescents living with a chronic illness: an examination of the efficacy and acceptability of a stepped-care family resilience intervention, compared to standard mental helath promotion practices at one paediatric hospital in Australia.
Hunter New England Local Health District / Hunter Institute of Mental Health
353 participants
Sep 2, 2013
Interventional
Conditions
Summary
Children who live with a chronic illness and their families face a multitude of challenges and are often more vulnerable to mental illness due to persistent levels of stress experienced in relation to the illness and other issues. The Child Illness and Resilience Project (CHiRP) aims to develop and evaluate the acceptability and effectiveness of a family resilience based mental health promotion intervention designed to enhance the well-being of this vulnerable population. The testable hypotheses are; 1. that the provision of a Family Resilience and Well-being booklet containing information, strategies and self-directed activities designed to promote family resilience to parents/carers of children with a chronic illness will improve psychological well-being and family resilience (as measured by scores on standardised measures of relevant constructs such as psychological distress, family functioning, social connectedness, family beliefs and help-seeking behaviours); 2. that for parents/carers of children with a chronic illness who experience above normal levels of psychological distress, participation in an Family Resilience Information Support Group will further improve psychological well-being and family resilience (as measured by scores on standardised measures of relevant constructs such as psychological distress, family functioning, social connectedness, family beliefs and help-seeking behaviours), relative to receiving the booklet only. 3. that the CHiRP Family Resilience resources build the capacity of the health sector to standardise provision of information, support and resources to families who have a child with chronic illness (as measured by evaluation data from participants and health sector staff).
Eligibility
Plain Language Summary
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Interventions
Step 1: Routine dissemination INTERVENTION: Family Resilience and Well-being Fact Sheet EXPOSURE: Parents whose child/young person is discharged from the paediatric hospital will receive a mental health promotion message and brief Family Resilience and Wellbeing Fact Sheet. All parents receive this brief resource as part of an existing paediatric administrative discharge procedure. This level of the project involves working in collaboration with the hospital to introduce and consolidate a method of standardised care procedure concerning provision of family resilience and well-being information to paediatric patients and families. Step 2: Targeted dissemination INTERVENTION: Family Resilience and Well-being Booklet EXPOSURE: Parents whose child attends selected Outpatient Clinics at the paediatric hospital and who consent to participate in the project will receive a Family Resilience and Well-being booklet. The booklet is a self-directed workbook primarily aimed at parents, based on a behaviour change model. The booklet contains information and activities designed to improve well-being and resilience of parents and family members, including children with chronic illness and their siblings. Step 3: Active dissemination INTERVENTION: Parent/Carer Information Support Group EXPOSURE: Parents who participate in Step 2 (Booklet intervention) and are identified as experiencing psychological distress, will be invited to attend a parent information and support group. Content of the group sessions will be based on the Family Resilience and Well-being booklet and will provide the additional benefit of an opportunity for discussion and practice of the strategies within a facilitated, interactive peer-supported environment. The information and support groups will be conducted over six weeks. In week one participants will attend a full day session during which they will have the opportunity to connect with other parents, share their experience and interact with the facilitators to engage with the material in the Family Resilience and Well-being booklet. There will be two group facilitators and up to 15 participants per group. A session attendance list will be completed by facilitators and participants to record attendance. Over weeks two to five, material pertaining to family resilience strategies will be posted once a week onto an online forum by a research team member who will act as moderator of the site. Participants will be encouraged to read the material, engage in the activity with their family, and post their comments for group online discussion. In week six, a final session will provide an opportunity for parents to meet face-to-face to discuss their experiences, review their participation in the program, identify ongoing social supports and complete a program evaluation and the primary outcome measures.
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ACTRN12613000844741