Community-based respiratory health measures in children and young people with cerebral palsy: A scoping review.

AIM: To identify, map, and describe outcome measurement domains and instruments used within a community setting to assess respiratory health in children and young people aged 1 to 18 years, diagnosed with cerebral palsy (CP). METHOD: A scoping review methodology informed structured searches in nine databases, grey literature, and registries, conducted in August 2021 (updated in February 2023). Articles were screened for eligibility by two independent researchers. Any outcome measurement instruments used to assess respiratory health or associated impact were extracted, categorized, and mapped to health and health-related domains of the International Classification of Functioning, Disability, and Health. RESULTS: Seventy-six outcome measurement instruments were identified across 78 articles worldwide between 1970 and 2023. These were categorized into 'Body functions and structures' (n = 20), 'Activity and performance' (n = 22), and 'Participation and quality of life' (n = 19), with a further 15 mapped to 'Health care resources use'. INTERPRETATION: No consensus of 'what' to measure and 'how' to measure respiratory health in children and young people with CP was found. Moreover, many measures were not replicable in individuals with more severe forms of CP, excluding those at increased risk of respiratory-related morbidity and mortality. Further research is required to agree important outcome domains and associated measures in research and clinical practice. WHAT THIS PAPER ADDS: A limited number and size of experimental designs were found. Seventy-six measures were identified to assess respiratory health in cerebral palsy. No consensus was found in 'what' or 'how' to measure respiratory health. Many measures were not replicable in children and young people at risk of poorer respiratory health outcomes. Children and young people with comorbidities and learning disability were frequently excluded from studies.

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

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.