The role of spirituality in people with amyotrophic lateral sclerosis and their caregivers: Scoping review

• Published in: Palliative & supportive care Vol. 21; no. 5; pp. 914 - 924
• Main Authors: Gonçalves, Filipe, Teixeira, Margarida I., Magalhães, Bruno
• Format: Journal Article
• Language: English
• Published: England Cambridge University Press 01.10.2023
• Subjects: Amyotrophic lateral sclerosis; Amyotrophic Lateral Sclerosis - complications; Amyotrophic Lateral Sclerosis - psychology; Caregivers; Caregivers - psychology; Citation management software; Humans; Motor neurone disease; Palliative care; Qualitative Research; Quality of Life - psychology; Religion; Religiosity; Research methodology; Spirituality; Subject heading schemes; Terminal illnesses; Spirituality; Amyotrophic lateral sclerosis; Life purpose; Meaning; Motor neuron disease
• ISSN: 1478-9515; 1478-9523; 1478-9523
• DOI: 10.1017/S1478951522001511

There are few studies evaluating the role of spirituality and the role of spiritually integrated interventions in people with amyotrophic lateral sclerosis (PALS) and their caregivers. A scoping review was conducted to examine the nature and breadth of peer-reviewed literature on the role of spirituality, interventions integrating spirituality, and outcomes for PALS and their caregivers. A literature review was performed, following the methods from the Joanna Briggs Institute Reviewers, based on all articles published between January 2006 and April 2022, identified in the CINAHL Complete, MEDLINE Complete, MedicLatina, Psychology and Behavioral Sciences Collection, and SPORTDiscus with full-text databases using key terms. Extracted data included research aims, study design, population and characteristics, theme description, and measures or type of intervention. A total of 18 articles were included in this study: 14 qualitative, 3 quantitative, and 1 protocol of a quantitative study. Eight studies were based in Europe. The search identified different main themes related to spirituality for caregivers and patients, 2 spiritual measure scales, and one intervention. However, many studies were limited in sample size, generalizability, and transferability and used less sophisticated research designs. This scoping review illustrates the importance given to spirituality by caregivers and PALS and reveals a very heterogeneous response. Thus, experimental studies in the area of spirituality are needed to systematically explore the impact of spiritual interventions, and the results of these studies could advance practice and policy by enhancing the quality of life for PALS and their caregivers.