Family management experience of parents of children with chronic heart failure: A qualitative study

Abstract

Purpose: To explore the experience of family management among parents of children with chronic heart failure.

Design and methods: Qualitative descriptive phenomenology was used as the research design. The sample included 16 parents. For data collection, semi-structured interviews were conducted. Colaizzi's seven-step analysis method was used for data analysis. Themes were encoded and created with Nvivo 12.0 Plus software.

Results: Three themes and ten sub-themes were identified: (1) weakened family socialization (diminished parental role in social education and insufficient socialization of children), (2) experience of five psychological stages (resistance, self-blame, worry, exhaustion, acceptance), and (3) family management dilemmas (low social awareness of the disease, heavy economic burden, and limited coping style).

Conclusion: The experience of parents of children with chronic heart failure is complex. The children have low socialization and face public prejudice. Parents are stressed by social education, economics, and the five psychological stages they have experienced. Families face difficulties such as heavy economic burdens and limited coping styles.

Practice implications: To address these complexities, pediatric nursing staff should take steps to improve family management and, as a result, children's quality of life. Our study provides a resource for pediatric nursing staff when implementing family management interventions.

Keywords: Chronic heart failure; Family management experience; Parents; Qualitative study.