A Qualitative Evidence Synthesis Exploring Caregiver Information Needs and Experiences Caring for a Child with Chronic Heart Failure

Abstract

Aim: To synthesize qualitative studies relating to caregivers' information needs and experiences caring for a child with chronic heart failure. Background: Children with chronic heart failure (HF) place a considerable burden on healthcare systems each year and is associated with significant stress for caregivers. Despite substantial knowledge generation and implementation amongst healthcare providers in this field, knowledge translation strategies that target caregiver audiences have lagged. To date, little is known about what literature exists about caregiver's information needs and experiences caring for a child with HF. Design: Qualitative evidence synthesis Methods: Sandelowski and Barroso's Handbook for Synthesizing Qualitative Research guided our review, cross-referencing the ENTREQ statement to report our findings. With librarian guidance, seven databases were searched in November 2023. Search results were imported into Microsoft Excel from EndNote 21. Two independent reviewers (CC, KS), supervised by a senior author (SDS), conducted the initial title/abstract and secondary full-text screens. Results: One study met the inclusion criteria outlined in our synthesis, identifying three themes and ten subthemes. Our findings impeded the ability to conduct any analysis. Conclusion: This review was the first of its kind, looking to synthesize caregiver's information needs and experiences caring for a child with chronic HF. One article met the inclusion criteria. This synthesis highlights a significant knowledge gap in caregivers' experiences and information needs when caring for a child affected by chronic heart failure. This study emphasizes that previous educational tools were not designed using research evidence about parent experience. This also validates the critical need for qualitative interviews with parents about their information needs and experiences to provide more relevant and understandable information to parents in this difficult situation.