The experience of living with congenital heart disease from the perspective of the affected child or adolescent and its family: a systematic qualitative review

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Introduction Congenital heart disease is one of the most prevalent congenital disabilities and significantly affects the lives of children and adolescents with congenital heart disease and their families. They tend to experience psychological, behavioural and relational comorbidities, leading to many complications and maladaptive behaviours. However, no literature review has been identified that addresses the whole family perspective. Objective To describe the experience of living with congenital heart disease from the perspective of the affected child or adolescent and their family. Methods A systematic qualitative review was conducted in PubMed, CINAHL, PsycINFO and Scopus databases between May and July 2022. The review protocol has been registered prospectively in PROSPERO. The key terms used were "experiences", "congenital heart disease'', "family", and "infants" with their respective synonyms, identified from MeSH terms, the thesaurus and the literature. The methodological quality of the studies was assessed. The Critical Appraisal Skills Programme questionnaire was used to assess qualitative studies. The Joanna Briggs Institute tool was utilised to evaluate literature reviews. Subsequently, two researchers jointly performed a qualitative content analysis of the selected articles. Results Ten studies were identified, and their methodological quality was generally good. None of the studies included in the same investigation the experience of more than one of the populations described (children or adolescents, siblings or parents). The sample sizes of the studies varied between 2 and 30 participants, and some did not report the sample size. The analysis permitted the child or adolescent and their family's experience to be grouped into four main themes: 1) Experiencing the impact of the initial diagnosis, 2) Living a "roller coaster" of emotions, 3) Coping with the day-to-day burden of the disease, 4) Finding sources of strength and opportunities. Conclusions The potential impact of a diagnosis of congenital heart disease on the life experience of children, adolescents, and their families has been evidenced. However, no studies have explored the family experience as a whole. It would be necessary to have more information about the family unit experience. Although healthcare disciplines conceptually recognize whole-family care as the focus of their practice, this idea remains a clinical ideal in most cases. Therefore, a paradigm shift in health care is necessary, from a model of attention exclusively focused on the patient to one in which the family is incorporated into the care process.