The Experiences of Parents of Children Undergoing Surgery for Congenital Heart Defects: A Holistic Model of Care

Abstract

The present article is based on a qualitative study focusing on parents of children born with congenital heart defects (CHDs) and hospitalized in the children’s intensive care unit post-surgery. Our aim was to explore parents’ subjective experiences as primary caregivers. Ten semi-structured interviews were conducted and analyzed using interpretative phenomenological analysis according to the instructions of Smith and Osborn. Our analysis yielded eight categories which were grouped into four themes and two main superordinate themes: (1) dialectical tension between positive and negative experiences; and (2) fluctuations between the inner and the outer world. The two superordinate themes intersect such that parents report positive as well as negative experiences within both their inner and outer worlds. Based on our analysis, we found that the experience of having a child undergo surgery for a CHD can be regarded as a chaotic period characterized by uncertainty, confusion, and helplessness. It is therefore no surprise that many parents display negative psychological outcomes which extend beyond the period of hospitalization and may also affect their future parenting and coping. However, within this chaotic and stressful situation, parents had occasional supportive experiences which decreased their emotional distress and isolation and helped them throughout this difficult period. We thus conclude that the support offered to parents during the hospitalization period should be increased by trying to minimize their negative experiences and strengthen their inner coping abilities. These changes cannot be implemented without also addressing the needs of the medical staff in their role as caregivers. Therefore, we propose a holistic model of care which supports both parents as caregivers of children undergoing surgery for CHD and the medical staff involved in their care.

Parental experiences of their infant’s hospital admission undergoing cardiac surgery: A systematic review

“…An update of the search was performed in august 2020 and resulted in one additional article, which was included. 14 The characteristics of the included studies are summarised in Table 1. Six articles were qualitative studies, 8,14-18 and two were mixed-methods studies.…”

“…Some studies interviewed the parents at home and in the hospital. [14][15][16][17]19,20 One study only interviewed fathers. 16 One study had only mothers included.…”

“…17 In six studies, the main research question was mentioned. [14][15][16][17][18][19] Only one study described the heart disease. 20…”

Family functioning in pediatric heart transplantation: Variables associated with poor outcomes

“…34 Understanding the frequency of transplant-related complications and their prognosis could play a role in exacerbating uncertainty, a common issue in chronic medical conditions. [35][36][37] As seen with CHD, parental uncertainty focuses on prognosis/outcomes and incorporating the child in the family unit, all of which may plausibly affect family functioning. 35,38 In our study, parental perceptions of barriers to medication were strongly associated with poorer family functioning.…”

“…Additionally, the median survival has improved but pOHT continues to be a temporary intervention, with a cumulative median survival of 18 years 34 . Understanding the frequency of transplant‐related complications and their prognosis could play a role in exacerbating uncertainty, a common issue in chronic medical conditions 35‐37 . As seen with CHD, parental uncertainty focuses on prognosis/outcomes and incorporating the child in the family unit, all of which may plausibly affect family functioning 35,38 …”