Sclerosi Laterale Amiotrofica, cambiamento di vita e rappresentazione dell’assistenza: uno studio quali-quantitativo su pazienti e caregiver

Patients and caregivers show a cyclic pattern of change of life based on the progression of illness, the emotional and behavioral reactions to the disease and the way of coping through this. The caregivers’ pattern is characterized by a sort of “process within the process”, a way of working-through about the meaning of life and death challenged by the seriousness of illness and the day by day care of patients. Patients and caregivers identify care as health service, referring to nursing and hospital-based care. Patients’ idea of care differs from that of their caregivers for the more importance given to physical rehabilitation and meditation on the meaning of life and death. The caregivers’ idea of care is also focused on the centrality of home care and social welfare. The couples’ agreement is related to a better psychological well-being in caregivers, while the disagreement is related to worst levels of QoL and burden.10 patients and 10 caregivers, were consecutively recruited at NEMO (NEuroMuscular Omnicentre) in Milan (Italy) from January to June 2009. Data were collected through in-depth interviews and questionnaires (BDI, STAI, ZBI, MQoL, ALSSQoL). Grounded Theory, T-LAB (a software for quantitative text analyses) and SPSS was used to manage the data and illustrating findings.- to observe the impact of agreement or disagreement about the idea of care, between patients and caregivers, on QoL, depression, anxiety and caregiver burden.- to describe the idea of care of patients and caregivers as revealed by their words;- to present a model that explicates the dimensions of personal change of life as revealed by patients and caregivers;The aims of the three studies presented in this doctoral thesis are:Although psychological studies have tried to understand the illness experience of patients and caregivers living with Amyotrophic Lateral Sclerosis (ALS) through questionnaires, little is known about it and the idea of care, what the patients really need and what the caregivers identify as care, as described by people