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

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.

Life situation of a caregiver of a child with congenital heart defect and/or other cardiac problems: structure and preliminary validation of a new questionnaire

“…Previous studies have shown that parents of children with CHD as their main caregivers require an individualized and multidisciplinary approach toward care to best adapt to the dynamic stressors associated with raising a child (Gramszlo et al, 2020). Emotional challenges related to being a caregiver of a child with CHD and/or other cardiac diseases (OCD) affect caregivers' competence, well-being, and attachment to sick children (Knight Lozano et al, 2021). The literature on the subject has focused mainly on qualitative research on the functioning of parents/guardians of children with CHD and other OCD (Hoffman et al, 2020;Landry et al, 2022).…”

Quality of Life among Caregivers of Patients Diagnosed with Major Chronic Disease during COVID-19 in Saudi Arabia

“…Family and caregivers with such complex cardiovascular diseases are emotionally and psychologically affected; this influences their care, behaviors, and attitudes. Specifically speaking, the emotional challenges that caregivers face and the practicalities of undertaking the role of a caregiver has an impact on both the caregiver and the QoL of the patient [ 12 ]. Most commonly, care provided by the caregivers can be experienced as being stressful.…”

Impact of educational videos on maternal anxiety caused by children's heart surgery

“…Although surgical techniques for congenital heart disease (CHD) have improved in recent years, up to 50% of mothers experience significant depression and anxiety before and after surgery. [1][2] Mothers of children undergoing cardiac surgery appear to experience greater anxiety than those whose children undergo other types of surgeries. 3 Additionally, surgical or post-surgical complications could exacerbate maternal depression and anxiety.…”