Living Outside the ALS Home – Everyday Experiences, Challenges and Needs of Adult Children with a Parent with ALS

Adult children of a parent with ALS may be highly burdened and in need of support, but studies of their experiences and needs are scarce. The aim of this study was to explore everyday experiences, challenges and needs of adult children living outside the home of a parent with amyotrophic lateral sclerosis (ALS). The design was qualitative using Interpretive Description methodology and Sense of Coherence as framework. Focus group interviews were conducted with 16 adult children. Participants experienced changes in relationship and roles with siblings and parents when ALS moved into the family. Their parents' disease evoked a need for understanding ALS and its trajectory as the disease raised questions, concerns, and sorrow. Furthermore, having a parent with ALS led to strong and mixed emotions and dilemmas like bad conscience, self-blame, gratitude and closeness and wanting to be there but also not being able to bear witnessing the deterioration of their parent. Adult children experience profound challenges and needs related to their parent's disease. They need information and support from professionals and peers as they struggle to balance the demands related to ALS and everyday life with family, work and leisure. Professionals should provide support for this vulnerable group who appear highly burdened practically and emotionally by the situation.