The Congenital Heart Disease Parent Stress and Resilience Study

Funded by HeartKids Australia and supporters of the ACHH

Part 1: Development and piloting of the Congenital Heart Disease Family Resilience Program

Collaborators

HeartKids Australia; HeartKids New Zealand; Melbourne Graduate School of Education, University of Melbourne, Australia.

Description

Recent reviews of the impact on families of congenital heart disease (CHD), and the way these families cope, have highlighted a range of mental health issues in these parents, such as post- traumatic stress, anxiety, depression and adjustment problems. Although survival rates are such that many children reach adulthood, fear of death and uncertainty around life expectancy as well as concern about their child’s quality of life contribute to high levels of anxiety and distress in these parents. Multiple stress points and challenges to coping have been identified such as coping with the diagnosis; with transitions such as from hospital to home and communication with health professionals; and coping with relationship and co-parenting issues. In addition, recent research has suggested that an early acute distress reaction in parents to their child’s condition and surgical treatment has a major impact on their long-term mental health. In this study we have undertaken interviews with parents and systematic reviews of experiences of CHD parents and of previous programs. These three sources have been used to inform the development of a Family Resilience Program to support parents’ emotional wellbeing and enhance resilience. The program has been piloted with parents of children with CHD in collaboration with HeartKids Australia. The program will be adapted for delivery through HeartKids New Zealand.

Publications

Jackson AC, Frydenberg E, Liang RPT, Higgins RO, Murphy BM. Familial coping with child heart disease: A systematic review. Pediatric Cardiology 2015; 36(4): 695-712. doi:10.1007/s00246-015-1121-9

Jackson AC, Frydenberg E, Liang RPT, Higgins RO, Murphy BM. Parental coping programs for special needs children: A systematic review. Journal of Clinical Nursing 2016; 25: 1528–1547, doi: 10.1111/jocn.13178.

Jackson AC, Frydenberg E, Liang RPT, Higgins RO, Murphy BM. Parent’s perspectives on how they cope with the impact on their family of a child with heart disease. Journal of Family Nursing 2018; 40: e9-e17.

Jackson AC, Frydenberg E, Koey XM, Fernandez A, Higgins RO, Stanley T, Liang RP-T, Le Grande MR, Murphy BM. Enhancing parental coping with a child’s heart condition: A co-production pilot study. Comprehensive Child & Adolescent Nursing 2020;43(4):314-333.

Jackson A C. (2020). Managing Uncertainty in Prenatal Diagnosis of Congenital Heart Disease. JAMA Network Open. 3(5): e204353-e204353. doi:10.1001/jamanetworkopen.2020.4353

Part 2: Development of the Parent Distress Questionnaire for Congenital Heart Disease (PDQ-CHD)

Collaborators

Murdoch Children's Research Institute, Melbourne, Australia; The Royal Children's Hospital, Melbourne, Australia; Monash University, Clayton, Australia; Melbourne Graduate School of Education, University of Melbourne, Australia; IRCCS Policlinico San Donato Research and University Hospital, Milan, Italy; Cincinnati Children's Center for Heart Disease and Mental Health, Cincinnati, Ohio, USA.

Description

This study has arisen out of the Part 1 study on parent distress and resilience. Despite calls for identifying and assessing distress in parents of children with congenital heart disease, currently no paediatric cardiac-specific measures exist. This project aims to develop such a measure in collaboration with parents of children with CHD using co-design principles. Using the Parent Distress Questionnaire-Congenital Heart Disease (PDQ-CHD), health professionals will be able to identify key clusters of psychological, emotional and social concern to address with parents over the course of their child’s illness. Thus, the PDQ-CHD will assist health professionals to identify areas of most concern for parents and, thereby, better target the emotional and mental health support they provide. Data collection for this study, which will involve both qualitative and quantitative methods, is due to commence in late 2021.