Living beyond loss: a qualitative investigation of caregivers' experiences after the death of their relatives with amyotrophic lateral sclerosis

Background: Caregivers of Amyotrophic Lateral Sclerosis (ALS) patients experience varying psychological responses following the patient's death, including sadness, loneliness, guilt, and a loss of purpose. Objectives: This research aims to investigate the caregiver journey experienced from the time of diagnosis to the loss of a care recipient, with a specific focus on understanding the factors that contribute to improved coping with bereavement. Methods: The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 Italian bereaved caregivers of people affected by ALS (Mean Age = 59.78; Female: 60.98%; Male: 39.02%). Results: Results revealed 5 overarching themes representing 5 macro areas that emerged from the analysis of the interviews ("Caregiver's perception of his/her life", "Caregiver's feelings", "Caregiver's life after patient's death", "Caregiver's disease description", "Caregiver's help resources"), these were further defined based on 12 main themes, which were, in turn, articulated into 30 subthemes. The transition from life before ALS ("a peaceful landscape") to caregiver life (compared to the color "black") was a "shock", during which caregivers had to change their needs. However, life after the person living with ALS' death was both characterized by a sense of "re-birth" and "emptiness", and a general need for "psychological assistance" and "social support". Conclusions: Results emphasize the need to improve the psychological support offered to caregivers of person living with ALS after the patient's death, tailoring it to the specificity of the condition, to meet their emotional needs, reduce isolation and help them cope with practical challenges and plans.