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

AbstractBackground 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.Keywords: Amyotrophic Lateral Sclerosis (ALS)caregiverfamilygriefInterpretative Phenomenological Analysis (IPA) AcknowledgmentsWe would like to give special thanks to our participants who graciously gave their time to take part in this study.Ethics approval and consent to participateThis study was approved by the Ethics Committee of the IRCCS Fondazione Don Carlo Gnocchi (reference: September 2019), in Milan (Italy). This study was conducted following the Helsinki Declaration and informed consent was obtained from each participant (caregiver).Authors contributionsEV and FP contributed to the design and implementation of the research. EV and VP contributed to the analysis of the results and the writing of the manuscript. PB and FP authors provided critical feedback, validated the analysis and FP supervised the entire work.Disclosure statementThe authors declare that there is no conflict of interest regarding the publication of this article.Availability of data and materialsThe datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.