Caregiver experiences of paediatric inpatient cardiac services: A qualitative systematic review

Rachel Knight Lozano*, Stephen May, Carl Clarkson, Rebecca Sarjeant

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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Abstract

Background:
Advances in paediatric care have contributed to an increasing survival of children with complex heart disease. Yet, life-saving management demands prolonged inpatient admissions, which contribute to emotional and psychological distress for parents and other caregivers in a role of main custody.

Aim:
The purpose of this study was to identify, appraise and synthesise qualitative studies exploring caregivers’ experiences of paediatric inpatient cardiac services, generating an understanding of their needs in hospital and informing priorities for change in healthcare delivery.

Methods:
Searches were conducted in Medline, Allied and Complimentary Medicine Database, Cumulative Index of Nursing and Allied Health Literature, EMCARE, Scopus, PsychINFO, Proquest, OpenGrey and ETHOs from 2008–2019, reflecting recent advances in cardiac healthcare. Articles were selected using predetermined eligibility criteria dictating qualitative inquiry into caregiver perspectives whilst their child received hospital-based interventions for heart disease. All eligible studies underwent quality appraisal. Framework synthesis was used to analyse and summarise findings.

Results:
Twenty-seven studies involving 689 caregivers from 11 countries were included. Three overarching themes were identified: ‘emotional capacity to care’, ‘practicalities of caring’, and ‘the bigger picture of caring’.

Conclusions:
Through analysis and summary of qualitative primary research, this review captures the emotional challenges that caregivers face and practicalities of undertaking a caregiver role, whilst looking after their child with heart disease in hospital. The results widen the context of the caregiver role, encompassing the whole family unit beyond the hospital environment. This review exposes the impact of these challenges on caregiver competence, wellbeing and attachment to their unwell child, informing priorities for development of family-centred paediatric inpatient cardiac services.
Original languageEnglish
Pages (from-to)147-159
Number of pages14
JournalEuropean Journal of Cardiovascular Nursing
Volume20
Issue number2
Early online date14 Sep 2020
DOIs
Publication statusPublished - 1 Feb 2021

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