The consequences of child’s congenital heart disease for parents: A qualitative study

Abstract

Background: Affliction of a child by a chronic disease can significantly affect the whole family. Identifying the consequences of a child’s congenital heart disease (CHD) for parents can help health-care providers provide better care services to them. Objectives: This study aimed at exploring the consequences of a child’s CHD for parents. Methods: This study was conducted in 2020 using conventional content analysis. The 30 parents of 15 children afflicted with CHD were purposively recruited from a hospital and a physician’s private office in Sanandaj, Iran. Data were collected via semi-structured interviews and continued up to data saturation. Data analysis was performed via conventional content analysis suggested by Graneheim and Lundman. Results: The consequences of a child’s CHD for parents were grouped into three main categories, namely threatened family integrity (with three subcategories), psychological turmoil (with five subcategories)‌, and being in limbo (with three subcategories). The 11 subcategories of these three categories were the effects of CHD on parents, neglectful parenting for other family children, reluctance to have another child, anxiety, maternal depression and somatization, helplessness, fear over treatment failure, acceptance of an unchangeable reality, uncertain future, concern over hiding or not hiding a child’s CHD, and a heart full of pain, respectively. Conclusion: A child’s CHD can threaten family integrity, cause parents psychological turmoil, and put them in limbo. Health-care providers, particularly nurses, need to assess the needs of these parents and provide them with professional counseling and need-based emotional, informational, and financial support in order to reduce the negative effects of CHD on them.

Keywords

• child
• congenital heart disease
• parents
• qualitative research