[An open heart: experiences of the parents of children with congenital heart disease]

Abstract

Objective: To explore, from a gender perspective, the experiences of mothers and fathers of children with congenital heart disease at the time of diagnosis, including the opinions of medical staff taking care of these children and their families.

Methods: Qualitative research. Four individual interviews with medical staff and four focus groups with mothers and fathers living in Valencia Region (Spain) were carried out. Participants were selected by purposive sampling. The discourse analysis was triangulated between techniques and researchers and the results were verified with mothers, fathers and medical staff.

Results: Mothers and fathers differed in the way they expressed their emotions and in how they accepted the diagnosis of a serious illness in their child. However, both parents expressed the need for psychological support and highly appreciated the informal support from other parents with similar experiences.

Conclusions: The experience of the disease in a child is experienced differently by mothers and fathers. Health servies should pay attention to the psychological well-being of families, by including peer support groups and patient associations, which can play an important role as health assets.

Keywords: Apoyo; Cardiopatía congénita; Congenital heart disease; Estudio cualitativo; Gender perspective; Percepciones; Perception; Perspectiva de género; Research qualitative; Support.