Coping in parents of children with congenital heart disease: a systematic review and meta-synthesis

Objectives: Congenital heart defects (CHD) can be detected at ultrasound but are sometimes not diagnosed until birth, which can cause stress and heightened emotion within the family. Parents face challenges including dealing with surgical procedures for their child and integrating healthcare management into family life. The aim of this review was to understand parental coping with their child’s CHD.

Methods: Six databases were systematically searched to identify qualitative studies relating to parental coping in the context of having a child with CHD and which met inclusion criteria. Studies were subject to quality appraisal using Walsh and Downe’s checklist, and synthesised using Noblit and Hare’s meta-ethnographic approach.

Results: The synthesis of 22 studies reporting on 704 parents’ accounts showed that parent coping fell within four overarching themes: Emotional Responses, Support Systems, Parental Management and Avoidance. These four themes contained 13 subordinate themes.

Conclusions: Parental psychosocial coping varies over time from diagnosis, through surgery to childhood. Common themes were evident, but individuals employed their own styles and strategies based on prior experience, availability of social support, personal characteristics and beliefs. Parents tried to maintain a sense of normality, integrating CHD into their lives without it having a major impact except at times of transition and hospitalisation when they had to call on additional strategies or support to manage this stress. This review offers clear guidance to clinical services on how best to support parents and families.