Living beyond loss: A qualitative investigation of caregivers' experiences after the death of their relatives with Amyotrophic Lateral Sclerosis

Abstract Background The psychological experiences of a caregiver of an Amyotrophic Lateral Sclerosis (ALS) patient after the death of their loved one can vary greatly depending on the individual. Common experiences include grief, sadness, loneliness, guilt, and a sense of purposelessness. Objectives To investigate the prevalent emotional experiences encountered by caregivers and/or individuals who have provided care for ALS patients following their passing. Methods The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 (Mean Age = 59.78; Men: 39.02%) bereaved caregivers of people affected by ALS. Results The results highlighted 5 superordinate themes (“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”), 12 themes and 30 subthemes. In particular, it emerged that the transition from life before ALS (described as “a peaceful landscape” to caregiver life (mostly compared to colour “black” was lived as a “shock”, during which caregivers also had to change their needs (“Caregiver’s needs transformation”. On the other side, as literature confirmed, caregiver’s life after the patient’s death was both characterized by a sense of “re-birth” and “emptiness”, which could be filled by “psychological assistance” and different type of "social support". Conclusions Providing psychological support to caregivers of ALS patients after the death of their loved one is important for addressing their emotional needs, reducing isolation, and helping them navigate practical challenges and plans.