“Inexperienced swimmers in a rough and swirling sea”. A mixed-methods study of emotional, trauma, and quality of life aspects in Amyotrophic Lateral Sclerosis patients, formal and informal caregivers, and volunteers

This dissertation examines Amyotrophic Lateral Sclerosis [ALS] from a psychological perspective within the multidisciplinary framework of Health Psychology. The primary themes addressed include emotions, life experiences – particularly potentially traumatic ones from the past – and various aspects related to the quality of life of individuals affected by this disease, including both patients and their formal and informal caregivers. After exploring these dimensions theoretically, the aim is to investigate, using mixed-methods research, which aspects have the most significant impact on the lives of those who face this disease daily, from physical, emotional, practical support, and research perspectives. Following an initial narrative review of the literature, this dissertation presents several studies to explain the aspects mentioned above. The first three studies offer preliminary results involving patients, family members, and healthcare workers, who were recruited through collaboration with the Villa dei Cedri nursing home residence in Merate, Lecco, Italy, which provides care for ALS patients. These studies serve as a crucial starting point for understanding various psychological aspects in patients’, families’, and formal caregivers’ lives. Notably, interesting preliminary findings emerge regarding the psychological characteristics and modifiable risk factors of the disease among patients, their quality of life, that of their family members, and the burden and burnout dimensions experienced by those who take on the caregiver role. Moreover, these findings are particularly interesting when considered within the specific context where the research was conducted. The additional two studies presented later focused on a mixed-methods text analysis approach, beginning with a quantitative analysis using the Emotional Text Mining technique (Greco, 2020), followed by a qualitative analysis through detailed interpretation via discourse analysis (Ruiz, 2009) and positioning analysis (Davies & Harré, 1990). This approach highlighted the symbolic-cultural axes that emerge among patients, family members, and formal caregivers when they spontaneously talk about ALS experiences. The results identified the categories and main themes considered most important by those dealing with this disease. Consequently, the findings from all five studies presented here can yield multiple practical implications, including the enhancement of patient, and family and patient-centered individualized care with targeted psychological support; the training and continuing education of healthcare professionals caring for these patients, emphasizing not only medical but also psychological aspects of the disease; and the promotion of public awareness about ALS and its implications, particularly regarding the relational and emotional needs of patients and their caregivers. Finally, it is believed that these studies may also have ethical implications, particularly concerning end-of-life and dignity issues, offering insights into the wishes of patients and family members that arise from suffering, which outsiders may struggle to fully comprehend. Keywords: Amyotrophic Lateral Sclerosis, Emotions, Adverse Childhood Experiences, Quality of Life, Psychological Well-Being, Perceived Stress, Burden, Burnout, Needs, To Care, To Cure, Health Psychology, Mixed-Methods