Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study

Abstract

Aims and objectives: To explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.

Background: Despite the prevalence of congenital heart disease (CHD) in childhood, little is known about the experiences and impacts on the children and their caregivers after CHD diagnosis and surgery. Such knowledge is needed for meaningful support.

Design: A qualitative descriptive study.

Methods: Twenty-two caregivers of CHD children undergoing cardiac surgery participated in semi-structured interviews at a University Children's Hospital in China. Data were collected by an experienced and trained interviewer. Qualitative content analysis was chosen to describe the experiences of the caregivers.

Results: Caregivers of CHD children experienced significant demands. After the children underwent their CHD operations, the caregivers experienced complex psychological feelings and excessive stress impacting upon theirlives. In addition, caregivers constantly adapted their roles with self-fulfillment in caring activities.

Conclusions: CHD surgery has a major impact on the emotions and daily lives of children and their caregivers. This study offers a framework for understanding the importance of actively listening to caregivers so coping strategies can be implemented.

Relevance to clinical practice: Theexperiencesdescribed in this study contribute to a better understanding of the needs of caregivers whose children underwent CHD operations. They also provide valuable information to professional medical care staff that developfuture nursing assessments.