Newcastle Upon Tyne Hospitals NHS Foundation Trust, UK.
Faculty of Health and Wellbeing, Sheffield Hallam University, UK.
Eur J Cardiovasc Nurs. 2021 Feb 1;20(2):147-159. doi: 10.1177/1474515120951974.
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.
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.
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.
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'.
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.
儿科护理的进步促进了患有复杂心脏病的儿童存活率的提高。然而，挽救生命的治疗需要延长住院时间，这给主要监护的父母和其他照顾者带来了情绪和心理困扰。
本研究旨在识别、评估和综合探索照顾者在儿科住院心脏服务中的体验的定性研究，了解他们在医院的需求，并为医疗保健服务的提供提供优先事项。
从 2008 年至 2019 年，在 Medline、综合和补充医学数据库、护理和联合健康文献累积索引、EMCARE、Scopus、PsychINFO、Proquest、OpenGrey 和 ETHOS 中进行了检索，反映了心脏保健的最新进展。使用预定的资格标准选择文章，这些标准规定了对照顾者观点的定性调查，同时他们的孩子接受了心脏病的医院干预。所有符合条件的研究都进行了质量评估。采用框架综合分析和总结研究结果。
纳入了来自 11 个国家的 689 名照顾者的 27 项研究。确定了三个总体主题：“照顾的情绪能力”、“照顾的实际问题”和“照顾的大局”。
通过对定性原始研究的分析和总结，本综述捕捉到了照顾者面临的情绪挑战以及在医院照顾患有心脏病的孩子时照顾者角色的实际问题。研究结果拓宽了照顾者角色的背景，涵盖了整个家庭单位，超出了医院环境。本综述揭示了这些挑战对照顾者能力、健康和对生病孩子的依恋的影响，为以家庭为中心的儿科住院心脏服务的发展提供了优先事项。
