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

INTRODUCTION: Spirituality has gained increasing attention in healthcare, particularly in palliative care, as it supports meaning, purpose and connection during illness. While literature extensively explores patients' spiritual needs, growing evidence highlights the importance of addressing the spiritual needs of caregivers and healthcare professionals. Caregivers and relatives often face emotional, ethical and practical challenges during prolonged care pathways, impacting their well-being. Limited training and tools can hinder spiritual care, contributing to distress and burnout among professionals and unmet needs for families. Addressing spirituality in neurodegenerative disease palliative care is essential for holistic, person-centred approaches that foster coping, hope and ethical decision-making. This scoping review aims to map evidence on spiritual needs and challenges of caregivers, relatives and healthcare staff in end-stage neurodegenerative disease care. METHODS AND ANALYSIS: This review will follow the Joanna Briggs Institute framework (JBI) for scoping reviews. The search and reporting process will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. Inclusion criteria followed JBI's population, concept and context framework with no date or geographical limits; only English and Italian sources ensured accurate interpretation. Searches will use university-access databases and grey literature to capture policy and non-peer-reviewed sources. Databases selected: PubMed, CINAHL, APA PsycINFO and Scopus for comprehensive, multidisciplinary coverage. This inclusive approach is aligned with the purpose of scoping reviews, which aim to map the breadth and depth of available literature. Researchers independently screened titles/abstracts in Rayyan software with blinding, resolved discrepancies collaboratively, piloted and refined extraction tables, and jointly synthesised themes through iterative meetings to ensure rigour and consensus. Findings will highlight existing knowledge, identify gaps and inform future research and practice. ETHICS AND DISSEMINATION: Since secondary data will be analysed, no ethical approval is required. The results will be disseminated through publications subject to peer review. The protocol has been registered with the Open Science Framework https://doi.org/10.17605/OSF.IO/X9275.

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Journal
BMJ Open
Published
2026-04-01
DOI
https://doi.org/10.1136/bmjopen-2025-114259
Primary Topic
Religion, Spirituality, and Psychology
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Enrico De Luca, Giovanna Artioli, Federica Dellafiore, Antonio Brusini et al.
BMJ Open
Religion, Spirituality, and Psychology
article

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

Enrico De Luca, Giovanna Artioli, Federica Dellafiore, Antonio Brusini, Andreina Saba, Laura Bertarini
article en

Abstract

INTRODUCTION: Spirituality has gained increasing attention in healthcare, particularly in palliative care, as it supports meaning, purpose and connection during illness. While literature extensively explores patients' spiritual needs, growing evidence highlights the importance of addressing the spiritual needs of caregivers and healthcare professionals. Caregivers and relatives often face emotional, ethical and practical challenges during prolonged care pathways, impacting their well-being. Limited training and tools can hinder spiritual care, contributing to distress and burnout among professionals and unmet needs for families. Addressing spirituality in neurodegenerative disease palliative care is essential for holistic, person-centred approaches that foster coping, hope and ethical decision-making. This scoping review aims to map evidence on spiritual needs and challenges of caregivers, relatives and healthcare staff in end-stage neurodegenerative disease care. METHODS AND ANALYSIS: This review will follow the Joanna Briggs Institute framework (JBI) for scoping reviews. The search and reporting process will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. Inclusion criteria followed JBI's population, concept and context framework with no date or geographical limits; only English and Italian sources ensured accurate interpretation. Searches will use university-access databases and grey literature to capture policy and non-peer-reviewed sources. Databases selected: PubMed, CINAHL, APA PsycINFO and Scopus for comprehensive, multidisciplinary coverage. This inclusive approach is aligned with the purpose of scoping reviews, which aim to map the breadth and depth of available literature. Researchers independently screened titles/abstracts in Rayyan software with blinding, resolved discrepancies collaboratively, piloted and refined extraction tables, and jointly synthesised themes through iterative meetings to ensure rigour and consensus. Findings will highlight existing knowledge, identify gaps and inform future research and practice. ETHICS AND DISSEMINATION: Since secondary data will be analysed, no ethical approval is required. The results will be disseminated through publications subject to peer review. The protocol has been registered with the Open Science Framework https://doi.org/10.17605/OSF.IO/X9275.

BMJ OpenVol. 16(4)
University of Modena and Reggio Emilia (IT), University of Parma (IT), Azienda Unita' Sanitaria Locale Di Modena (IT), Azienda Sanitaria Unità Locale di Reggio Emilia (IT), Link Campus University (IT), University of Birmingham (GB)
Peace, Justice and strong institutions
Openalex Percentile: Top 28%
Religion, Spirituality, and Psychology
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