Families under pressure: A qualitative study of stressors in families of children with congenital heart disease.

Abstract

The objective of this study was to better understand the stressors in families of children with congenital heart disease (CHD) to assist with formulating targeted stress management plans for such families. A descriptive qualitative study was undertaken at a tertiary referral hospital in China. Following purposeful sampling, interviews were conducted with 21 parents of children with CHD regarding the stressors in their families. Following content analysis, 11 themes were generated from the data and categorised into six main domains: the initial stressor and associated hardships, normative transitions, prior strains, the consequences of family efforts to cope, intrafamily and social ambiguity, and sociocultural values. The 11 themes include confusion regarding the disease, hardships encountered during treatment, the heavy financial burden, the unusual growth track of the child due to the disease, normal events becoming abnormal for the family, impaired family functioning, family vulnerability, family resilience, family boundary ambiguity induced by role alteration, a lack of knowledge about community support and family stigma. Various and complex stressors exist for families of children with CHD. Medical personnel should fully evaluate the stressors and take targeted measures before implementing family stress management practices. It is also necessary to focus on the posttraumatic growth of families of children with CHD and strengthen resilience. Moreover, family boundary ambiguity and a lack of knowledge about community support should not be ignored, and further research is needed to explore these variables. Most importantly, policymakers and healthcare providers should adopt a range of strategies to address the stigma of being in a family of a child with CHD.