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

Knight Lozano, Rachel, May, Stephen, Clarkson, Carl and Sarjeant, Rebecca (2021) Caregiver experiences of paediatric inpatient cardiac services: A qualitative systematic review. European Journal of Cardiovascular Nursing, 20 (2). pp. 147-159. ISSN 1474-5151

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Official URL: https://doi.org/10.1177/1474515120951974

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.

Item Type: Article
Additional Information: Funding information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Chartered Society of Physiotherapy Charitable Trust (PRF/18/B12).
Uncontrolled Keywords: paediatric, Cardiac disease, systematic review, caregiver experience
Subjects: A300 Clinical Medicine
A900 Others in Medicine and Dentistry
B100 Anatomy, Physiology and Pathology
B900 Others in Subjects allied to Medicine
C600 Sports Science
Department: Faculties > Health and Life Sciences > Sport, Exercise and Rehabilitation
Depositing User: Rachel Branson
Date Deposited: 01 Dec 2020 16:51
Last Modified: 31 May 2021 14:38
URI: http://nrl.northumbria.ac.uk/id/eprint/44890

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