260 - BEING ALS PATIENT'S FORMAL OR INFORMAL CAREGIVER: PRELIMINARY RESULTS ON HEALTHCARE WORKERS' AND FAMILIAR' PSYCHOLOGICAL WELL-BEING

Session: D08S0015 - Family, Couple & Caregiving Processes in Health 1
AUTHORS:
Zambetti Elisa (Università degli Studi di Bergamo ~ Bergamo ~ Italy) , Baronchelli Irene (Villa Dei Cedri, Residenza Sanitaria Assistenziale ~ Merate (Lecco) ~ Italy) , Belli Simone (Universidad Complutense de Madrid ~ Madrid ~ Spain) , Mucci Clara (Università degli Studi di Bergamo ~ Bergamo ~ Italy) , Greco Andrea (Università degli Studi di Bergamo ~ Bergamo ~ Italy)
Abstract text:
Background: Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disease affecting about 6,000 people in Italy. Caring for ALS patients impacts the quality of life and psychological well-being of both informal and formal caregivers, yet few studies address this. Purpose: This research aims to analyze various aspects of caregiving for ALS patients among informal (family) and formal (healthcare) caregivers, focusing on psychological well-being, burden, and burnout. Methods: Nine formal caregivers (8 women) and 11 informal caregivers (9 women) participated, recruited from a nursing home in Italy. Formal caregivers' average age is 49.29 years (SD=3.86) with 6.58 means of service (SD=5.98); informal caregivers' average age is 48.30 years (SD=13.50), caring for relatives for 3.29 years (SD=2.50). Psychological well-being, burnout in formal caregivers, and burden in informal caregivers were evaluated, alongside testimonies about their experiences. Mixed-method analyses were employed using nonparametric techniques, Emotional Text Mining using T-Lab Software, discourse analysis, and discourse positioning analysis. Results: Both caregiver groups report high psychological well-being (Mfc=85.86; SDfc=9.03; Mifc=83.10; SDifc=11.44). Formal caregivers exhibit low emotional exhaustion (M=16.67; SD=10.087) and depersonalization (M=2.56; SD=2.19), with moderate personal gratification (M=29.11; SD=11.67; M=27.43; SD=11.29). Informal caregivers report a higher burden related to past situations (M=41.89, SD=18.25) when patients lived at home compared to present circumstances (M=29.09, SD=17.89) in which ALS patients reside in nursing home. Generally, formal caregivers discuss ALS patients' and families' challenges and coping strategies, emphasizing the need for more research. Informal caregivers focus on social and emotional support needs, seeing their role as necessity-based. Discussion: Results indicate a strong impact on the well-being of both caregiver groups, highlighting qualitative differences between formal caregivers and informal caregivers. Future analysis should explore these differences further. The findings provide valuable insights for designing interventions addressing the psychological challenges of both family members and healthcare workers in caregiving contexts.