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Caregiver experiences of paediatric inpatient cardiac services: A qualitative systematic review
Rachel Knight Lozano1, Stephen May2, Carl Clarkson3
1Newcastle Upon Tyne Hospitals NHS Foundation Trust, UK.
Insights
Caring for children with complex heart disease in hospital causes significant emotional and practical distress for parents. Understanding these caregiver needs is crucial for developing better family-centered paediatric cardiac services.
Area of Science:
- Pediatric Cardiology
- Caregiver Support
- Qualitative Research Synthesis
Background:
- Increased survival rates in children with complex heart disease necessitate prolonged hospital stays.
- Extended inpatient admissions cause significant emotional and psychological distress for primary caregivers.
- Current healthcare delivery may not adequately address the holistic needs of families with a child in pediatric cardiac care.
Purpose of the Study:
- To synthesize qualitative studies on caregivers' experiences with pediatric inpatient cardiac services.
- To understand the needs of caregivers during their child's hospitalization.
- To inform improvements in healthcare delivery for pediatric cardiac patients and their families.
Main Methods:
- Comprehensive literature search across multiple databases (2008-2019).
- Inclusion of qualitative studies focusing on caregiver perspectives during pediatric cardiac interventions.
- Quality appraisal of eligible studies and framework synthesis for data analysis.
Main Results:
- Synthesis of 27 studies involving 689 caregivers from 11 countries.
- Identification of three key themes: 'emotional capacity to care', 'practicalities of caring', and 'the bigger picture of caring'.
- Findings highlight the emotional challenges and practical demands faced by caregivers.
Conclusions:
- The review underscores the profound emotional and practical challenges caregivers face.
- Caregiver experiences impact their competence, well-being, and attachment to the child.
- Results emphasize the need for family-centered approaches in pediatric inpatient cardiac services to support the entire family unit.
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.
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