Caregivers in amyotrophic lateral sclerosis (ALS): preliminary results between paid care and family care.

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease affecting about 6,000 people in Italy. Caring for ALS impacts the quality of life and mental health of formal and informal caregivers, but few studies have explored this.

Methods: This research analyzes experiences of 9 formal caregivers (FC; 8 women) with an average age of 49.29 years (SD = 3.861) and 6.58 years of average length of service (SD = 5.975), and 11 informal caregivers (iFC; 9 women) with an average age of 48.30 years (SD = 13.500) and who have been caring for relatives for 3.29 years (SD = 2.500). All participants were recruited from an Italian healthcare residence. We assessed psychological well-being, burnout (for FC), and burden (for iFC), and included testimonies retrieved from online sources. Data were analyzed using mixed-methods analysis, including nonparametric tests, Emotional Text Mining, and discourse analysis.

Results: The results showed both groups had high psychological well-being (Mfc = 85.86; SDfc = 9.026; Mifc = 83.10; SDifc = 11.435). FC had low emotional exhaustion (M = 16.67; SD = 10.087) and depersonalization (M = 2.56; SD = 2.186), and a moderate level of personal gratification (M = 29.11; SD = 11.667; M = 27.43; SD = 11.238). iFC experienced a higher burden when the patient is in a healthcare residence than when he/she was at home. FC discussed patient and family challenges, emphasizing the necessity of research and new therapies; iFC focused on social and emotional needs, seeing themselves as adaptors out of necessity.

Conclusions: The study highlights the psychological impact of caregiving and preliminary qualitative differences between paid and family caregivers. Further analysis could explore these distinctions, aiding the development of targeted interventions to promote caregivers' well-being.