This scoping review protocol aims to map evidence on spiritual needs and challenges experienced by caregivers, relatives, and health professionals involved in end-stage neurodegenerative disease palliative care. It recognises that spirituality supports meaning, coping, hope, and ethical decision-making, and notes that caregiver distress and professional burnout may arise from limited training and tools to provide spiritual care.
The study will follow the Joanna Briggs Institute framework and the PRISMA-ScR guidelines, with no date or geographic restrictions and English or Italian sources. Searches will be conducted in PubMed, CINAHL, APA PsycINFO, Scopus, and grey literature to capture policy and non-peer-reviewed material.
Screening and data extraction will employ Rayyan with blinded independent review, followed by collaborative resolution of discrepancies; extraction tables will be piloted and refined, and themes will be synthesized iteratively. The aim is to identify existing knowledge, gaps, and implications for future research and practice in holistic, person-centered palliative care for neurodegenerative diseases.
Ethics are not required for secondary data, and dissemination will occur via peer-reviewed publications. The protocol is registered with the Open Science Framework.
BMJ Open published a clinical update in Research Highlights on 02 Apr 2026.
The item focuses on Spiritual care challenges and needs of carers, health professionals and relatives of individuals living with neurodegenerative diseases in palliative and end-of-life care: a scoping review protocol.
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