Psychosocial-spiritual needs of persons with physical disabilities, their caregivers and healthcare professionals at the end of life: a mixed methods systematic review
TL;DR
End-of-life care for PwPDs should move beyond symptom management to prioritise early, inclusive, and dignity-conserving conversations about EoL preferences and care decisions, and address psychosocial-spiritual needs.
Abstract
End-of-life (EoL) care research remains predominantly focussed on physical symptom burden and management, often overlooking psychosocial and spiritual needs. These needs warrant particular attention among persons with physical disabilities (PwPDs), who experience persistent healthcare inequities. Physical impairments affecting mobility, communication, and bodily function may further complicate EoL care. This mixed methods systematic review synthesised evidence on the psychosocial-spiritual needs of PwPDs, their caregivers, and healthcare professionals at EoL. Seven databases were searched from 1 January 2000 to 1 December 2025. Using a convergent integrated approach, quantitative findings were transformed and integrated with qualitative findings through thematic synthesis. Methodological quality was assessed using the Mixed Methods Appraisal Tool (MMAT), and confidence in qualitative findings was evaluated using GRADE-CERQual. Of 2,496 studies screened for eligibility, 31 studies were included, capturing the psychosocial-spiritual needs of PwPDs, caregivers, and healthcare professionals. Evidence was concentrated in neurological disease populations. Three overarching themes (psychological, spiritual, and social needs) and ten subthemes were identified. Across all three stakeholder groups, psychological distress, care delivery gaps, communication challenges, and uncertainties and misalignment in decision-making emerged as common and interconnected needs. Shared experiences between PwPDs and caregivers included existential questioning and avoidance of EoL conversations. PwPD-specific needs included loss of autonomy, worries about burdening others, and social isolation and stigma, while caregivers experienced substantial physical, emotional and practical burdens. EoL care for PwPDs should move beyond symptom management to prioritise early, inclusive, and dignity-conserving conversations about EoL preferences and care decisions. Addressing psychosocial-spiritual needs requires a whole-system approach that acknowledges the interconnected roles of PwPDs, caregivers, and healthcare professionals.