Exploring Caregiver Learning and Experiences Caring for a Child With Heart Failure: A Qualitative Study

Abstract

Background

Paediatric heart failure poses life-long, burdensome symptoms for the health care system and families. Diagnosis and discharge are stressful and anxiety-provoking for caregivers. They face uncertainty about their child’s health and become responsible for administering complex care in the home. Little is known about this topic. Our study aimed to explore caregiver learning and experiences caring for a child with heart failure to design and implement a knowledge translation tool.

Methods

Qualitative description guided our study. Recruitment occurred in a tertiary cardiac centre in Edmonton, Alberta, Canada. Data collection and analysis occurred concurrently until data redundancy was achieved. Inductive conventional content analysis was used to develop categories.

Results

Eleven interviews identified 2 main categories. One relates to how traumatic life experiences impact learning (eg, new diverse ways of learning, stress steepens the learning curve, and learning heart failure takes time). The other relates to families’ new life reality after diagnosis (eg, emotional distress and the new reality).

Conclusions

This study provides insight into caregivers’ learning needs and experiences caring for a child with heart failure. Caregivers describe how the trauma of having their child diagnosed with heart failure negatively impacts their learning capabilities and way of life going forward. Caregiver learning experiences and preferences for digital platforms is also highlighted. This knowledge will inform the design of an online educational tool about pediatric heart failure for caregiver audiences. This tool will empower and improve caregiver decision-making related to their child’s daily heart failure management, with the goal to positively impact clincal outcomes, lessen stress and anxiety.