Experience of Spirituality and Religiosity in the Face of Amyotrophic Lateral Sclerosis (ALS)
Rare diseases, Amyotrophic Lateral Sclerosis, Spirituality, Case Reports.
Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease responsible for causing progressive and irreversible motor paralysis. In the face of this adverse condition, individuals may seek meaning and support in spirituality or religiosity to cope with the stressors associated with the illness. This study, of a quantitative-qualitative nature with a multiple case study design, aims to investigate the expression of spirituality and religiosity in the lives of people diagnosed with ALS, in order to understand the impact of such experiences on psychological well-being and quality of life. Three individuals who have been living with this diagnosis for at least six months will be invited to participate. Data collection will involve a questionnaire to gather sociodemographic and clinical information, and the following tools will be applied: the Spirituality-Related Attitudes Scale (ARES), the World Health Organization’s Quality of Life Instrument – Spirituality, Religiousness, and Personal Beliefs module (WHOQOL-SRPB), and the Brief Specific Quality of Life Questionnaire for ALS Patients (QVELA-20/Br). In addition, in-depth, semi-structured, individual, and face-to-face interviews will be conducted, based on a previously prepared script. The participants' responses will be transcribed in full. The results will be categorized and analyzed using the principles and steps of Thematic Analysis, which allows for an in-depth exploration of the participants’ personal experiences. Given the lack of psychosocial intervention strategies in this area, obtaining an understanding of how spiritual/religious experiences relate to the psychological well-being of people with ALS is expected to contribute to the formulation of intervention proposals capable of integrating religious and spiritual aspects into clinical care, with the potential to improve the quality of life for these individuals.