The complexity of having a child with a congenital heart defect in a developing country: A qualitative study of parental needs

Abstract

PurposeTo explore parental needs related to their experiences of living with a child with congenital heart defect (CHD) since the diagnosis. Design and methodsAn interpretative qualitative study developed with nine parents of children between the ages of five months and 11 years diagnosed with CHD. Interviews were conducted at an ambulatory pediatric cardiology centre. Data were analyzed using inductive thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was followed for quality reporting. This research was approved by a research committee. ResultsOne central theme emerged, namely ‘A desire to feel safe in dealing with the demands of CHD,’ along with two main themes. The first is ‘Looking for effective relations with healthcare professionals and health care systems’ which encompasses three types of need: (1) need for continuous, clear and accurate information; (2) need for resolution and the support of services such as the public health care system and social services; (3) need for trust in health care professionals. The second theme is ‘Looking for balance in daily life’ with two main needs: (1) maintain family functioning and (2) learn to deal with the child and CHD. ConclusionThe main parental needs are related to their interactions with healthcare professionals and healthcare systems, highlighted by a need for information and trust relationships to feel safe in their daily lives. Practice implicationsOur results imply rethinking the nurse presence in ambulatory care, implementation of a family-centered care approach and addressing the diverse and multifaceted experiences and needs of parents and children with CHD in different health care contexts.