What is the Experience of Parents During the Home Care Management of Children With Congenital Heart Disease, Following Cardiac Surgery? Findings From a Metasynthesis

Abstract

The home management of children with congenital heart disease (CHD) in the postsurgical phase represents one of the most complex phases for their parents. To date, the information available in the scientific landscape regarding the experiences and difficulties faced by the parents of children with CHD during this phase is still lacking. Accordingly, the study aims to synthesize the available qualitative evidence on parents’ experience during the home care management of children with CHD after cardiac surgery. Two databases were systematically searched to identify qualitative studies relating to parental experience about the home care management of children with CHD after cardiac surgery. Studies were carried out using Noblit and Hare's meta-ethnographic approach. The search yielded 183 results. After applying the inclusion criteria, nine articles were included in the meta-synthesis. The included articles were analyzed following the meta-ethnography approach. Five main themes were identified: (a) psychological and emotional impact and daily challenges; (b) continuity of care; (c) loneliness, isolation, and the need for knowledge; (d) new parental role; (e) assistance and support. The role of parents in the postsurgical phase of children with CHD is essential. However, numerous psychological nuances and emotional contradictions emerged from the experience of parents involved in this phase. Further studies are needed to identify parenting health and psychosocial support improvement strategies at home.

Barriers and facilitators of experiencing pregnancy and motherhood with congenital heart disease: A secondary qualitative analysis

“…Participants overlooked the potential long‐term risks for their children's future health, even if this option may even (Barker & Osmond, 1986 ). Patients with long‐term illness conditions strive to move from diversity to normality (Dellafiore et al, 2021 ), and the chance to have children may help them feel “normal” (Tyer‐Viola & Lopez, 2014 ). Our findings show that the desire to become a mother forces them to carry the burden of their parents' worry, in addition to request help for physical and psychological support in childcare.…”