CHRISTOPHE KEREBEL
CHRISTOPHE KEREBEL
My Twitter : @chriskere CHRISTOPHE KEREBEL
THE CHD FAMILY RESILIENCE PROGRAM
This collaborative research and translational project brought together the Melbourne Graduate School of Education’s research on child and adolescent coping and parenting style, the ACHH Director’s research on the familial impact and management of complex paediatric oncology cases, and the expertise of HeartKids Australia in CHD-related parental support.
Two systematic literature reviews were undertaken, examining familial impact and coping with CHD 4 and parent education and support programs for children with special health care needs 5. Interviews with parents of children with CHD connected to HKA’s Family Support Program were then undertaken, using an interview schedule developed collaboratively between the HeartKids Family Support Workers, all of whom were parents of children with heart conditions themselves. The interview content was informed by the systematic reviews and the lived experience of the HeartKids staff.ˮ The co-design of the interview schedule ensured that the domains covered, such as disease management, management of transitions (e.g. hospital to home, home to school) and social support were relevant, and that the language used in the questions was consistent with the language normally used by the parents 6 . Language is important in the way people frame their perception and responses to their circumstances: congenital heart health, rather than congenital heart disease; heart difference, rather than heart defect.
1. Marino BS, Lipkin PH, Newburger JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 1143-1172. 2012/08/02. DOI: 10.1161/CIR.0b013e318265ee8a. 2. Meentken MG, van Beynum IM, Legerstee JS, et al. Medically Related Post-traumatic Stress in Children and Adolescents with Congenital Heart Defects. Frontiers in pediatrics 2017; 5: 20. 2017/03/01. DOI: 10.3389/fped.2017.00020. 3. Woolf-King SE, Anger A, Arnold EA, et al. Mental Health Among Parents of Children With Critical Congenital Heart Defects: A Systematic Review. J Am Heart Assoc 2017; 6: e004862
Following thematic analysis of the interviews, the intervention was developed, with the co-production of a Manualised program, followed by training of the HeartKids Family Support Workers as co-facilitators of the group program by the MGSE team, and finally, delivery of the program as a pilot. When piloted, the program attracted mainly parents of children with major conditions, who were experiencing higher levels of stress than previously shown in samples of parents of children with a range of other illnesses. There were significant increases in parents’ self-efficacy both immediately and six months after program participation with the parents increasing their coping capacity over time as they put into practice new skills acquired through the program, and a growing use of productive coping strategies associated with increased resilience. Future development of the program could include offering the original face-to-face version as a ‘virtual’ group using Zoom and the development of an online self-managed version which would be an ideal way of extended program reach for families who are unable to use scheduled sessions, whether face-to-face or ‘virtual’. This may provide a cost-effective alternative as we know that online technologies can provide similar and, in some cases, superior improvements to health and well-being outcomes.
Authors: Professor Alun C Jackson is Director, Australian Centre for Heart Health and an Honorary Professor in the Faculty of Health at Deakin University. Dr Barbara Murphy is Principal Researcher, Australian Centre for Heart Health, and an Honorary Associate Professor in the Faculty of Health at Deakin University.
2017/02/06. DOI: 10.1161/JAHA.116.004862. 4. Commonwealth of Australia. National Strategic Action Plan for Childhood Heart Disease-Beyond the Heart: Transforming Care. Canberra: Department of Health, 2019. 5. Jackson AC, Liang RP, Frydenberg E, et al. Parent education programmes for special health care needs children: a systematic review. J Clin Nurs 2016; 25: 1528-1547. 2016/04/16. DOI: 10.1111/ jocn.13178. 6. Jackson AC, Higgins RO, Frydenberg E, et al. Parent’s Perspectives on How They Cope With the Impact on Their Family of a Child With Heart Disease. Journal of Pediatric Nursing 2018; 40: e9-e17. DOI: 10.1016/j.pedn.2018.01.020.
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