A Dimensão Espiritual das Pessoas com Esclerose Lateral Amiotrófica: Um Estudo Misto Sobre Necessidades e Recursos Espirituais

Abstract

Introduction: People with Amyotrophic Lateral Sclerosis (ALS) can turn to spirituality as a way of coping with the multiple challenges inherent in the progression of the disease. However, the difficulty in meeting these spiritual needs leads to their undervaluation by health professionals. In addition, there are limited publications that provide a structured review focusing on spiritual care and its effectiveness, as well as few studies evaluating the role of spirituality and the role of spiritually integrated interventions aimed at people with ALS. Objectives: To study the spiritual needs and resources of people with ALS in their current situation of palliative illness. Methodology: This was a mixed-methods study in which data was obtained via a video-recorded interview in which the SECPAL Spiritual Group Questionnaire (GES) was applied. The descriptive phenomenological approach focused on the experiences of people with ALS and was analyzed using the ATLAS.ti® tool, software developed for analyzing qualitative data. The quantitative process was carried out using the IBM® SPSS® version 29.0 for Windows® program, using correlations between the answers to the statements in the GES Questionnaire, the variables in the sociodemographic questionnaire, and the functional status of people with ALS. Spearman's or Pearson's coefficients were used to study correlations between variables without or with a normal distribution, respectively, according to the normality of the distribution parametric t-student test for independent samples, in the comparison between different groups, after ensuring a normal distribution. Results: Eighteen people with ALS were interviewed. In the correlations, the relationship with oneself and with others stood out as the most prominent spiritual components and the most relevant in the search for meaning in life. There was a moderate positive correlation between the age of the participants and the sum of the statements in the GES Questionnaire (r= 0.556; p=0.017) and a moderate positive correlation between the Intrapersonal domain of the GES Questionnaire and age (r=0.576; p=0.012). A statistically significant difference was also identified for the Intrapersonal domain between males (8,90 ± 2,558) and females (11,13 ± 1,126) (p=0.035). People with less education seem to score higher in the Transpersonal spiritual domain (r= -0.536; p=0.022). The functional status of people with ALS does not seem to be one of the main factors to consider when assessing or exploring the spiritual dimension. The experiences of people with ALS in their current situation include worries and inconveniences relating to the uncertain future and the impact on the family, emotional, social, and organizational problems, and the functional and symptomatic impact. They also include help, support, and sources of security such as coping strategies, transcendent, informal social interaction, community support, formal social interaction, the support network, and support for the self. The absence of security and the lack of crises were also addressed. The spiritual resources identified relate to a sense of fulfillment/purpose, support and being supported by those closest to them, hope, and the connection with a higher being, whether religious or not. The spiritual needs addressed relate to enjoying life and its purpose, accepting illness, resolving conflicts with family members, and helping careers, and hope, in the approval and availability of a new drug and/or a cure. Final considerations: These findings highlight the importance of individualized, comprehensive, and sensitive approaches in care and support practices for people with ALS. Experiences in the context of illness and spiritual needs and resources are essential factors to be considered for a holistic approach to health.