Experiences of Distress Among Mothers of Children with Single-Ventricle Hearts: A Qualitative Study

Abstract

Background:

Caregivers of children with single-ventricle hearts (SVHs) experience high levels of distress associated with the illness. The treatment course for SVH often places a significant burden on family caregivers due to the complex nature of the disease, and the stress of this experience is moderated by the family’s available emotional, social, and material resources to cope.

Objective:

Given the high level of involvement of the family in the treatment course, viewing the entire family as the unit of care is likely an important component of effective care provision. Accordingly, the objective of this work is to explore experiences of distress of family caregivers of children with SVH.

Design:

This study involved in-depth interviews with 14 parent caregivers of children with SVH.

Setting and Subjects:

Caregivers were drawn from a sample of children who received treatment for SVH at a major pediatric care center in the southeastern United States.

Results:

Results indicated four major types of stressors related to caring for a child with SVH: facing major upheavals, adjusting to a new normal, anticipating negative events, and experiencing challenges to role and identity. Additionally, results revealed three factors that functioned as resources which moderated the impact of these stressors: practical support, interaction with clinicians, and personal preparedness.

Conclusions:

Our findings highlight the complexity of experiences of caregivers of children with SVH and underscore the need for comprehensive family-centered care during the treatment course.