1. In this scoping review, qualitative studies on amyotrophic lateral sclerosis (ALS) demonstrated a perceived benefit of spirituality on outcomes in both patients and their caregivers.
2. However, quantitative studies demonstrated mixed results with respect to the role of spirituality on patient and caregiver outcomes.
Evidence Rating Level: 1 (Excellent)
Amyotrophic lateral sclerosis (ALS) is a debilitating motor neuron disease (MND) that often presents itself with significant psychological distress. Spirituality is an approach often used in palliative care to help patients suffering from terminal diseases, like ALS. However, few studies have evaluated the role of spirituality in patients with ALS and their caregivers. As a result, the objective of the present study was to review the literature on the role of spirituality in individuals with ALS and their caregivers.
Of 1208 identified records, 18 (n=387 patients; 214 ALS, 164 caregivers) studies were included from various databases from January 2006 to April 2022. Studies were included if they addressed spirituality in patients with ALS/MND or their caregivers. Studies were excluded if they evaluated outcomes relating to healthcare professionals treating ALS, or if they only addressed religiosity. The review was performed using Joanna Briggs Institute and PRISMA guidelines. The primary outcome was the role of spirituality or spiritual interventions on individuals with ALS/MND and their caregivers.
The results demonstrated that within the qualitative literature, spirituality helped caregivers cope and supported them during their new reality. For patients, spirituality allowed them to embrace a new interpretation of life and their diagnosis with a greater focus on gratitude and appreciation. However, the quantitative studies demonstrated that spirituality had a mixed effect on outcomes. Despite these results, the study was limited by the exclusion of languages other than English, Spanish, Portuguese, and French, which may have limited the comprehensiveness of the search. Nonetheless, the present study provided an important tool to guide health care professionals to better understand the role of spirituality in the context of ALS/MND patients and their caregivers.
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