Amyotrophic Lateral Sclerosis is a neurodegenerative disease that causes progressive physical impairment, as well as worsening limitations in the functions of breathing, swallowing and speech. An increasing number of studies emphasise the psychological impact of the disease and features of high caregiver burden, whereas less attention has been paid to the perception of how the whole family faces the disease itself. The aim of this study is to evaluate the associations among family cohesion and adaptability, according to the patients’ and caregivers’ perceptions, and factors such as patients’ coping strategies and caregivers’ burden. The data suggest the prevalence of high scores of cohesion and adaptability, especially in the ideal versions of family functioning, and correlations among such scores and markers of positive adjustment. The authors discuss theoretical, clinical and methodological hypotheses concerning these findings, as well as possible implications for the study of physical illnesses within the context of family relationships.
Keywords: Amyotrophic lateral sclerosis, family, circumplex model, quality of life, caregiver burden, coping strategies.
Francesco Tramonti, Paolo Bongioanni, Simona Vatteroni, Bruno Rossi, Corrado Bogliolo, in "TERAPIA FAMILIARE" 104/2014, pp. 5-22, DOI:10.3280/TF2014-104001