Abstract
AIMS AND OBJECTIVES: To explore reflections of family caregivers and health professionals regarding the challenges involved in caring for persons with amyotrophic lateral sclerosis and cognitive and/or behavioral impairments (PALS/CIs). BACKGROUND: Family caregivers of PALS/CIs are highly burdened and at great risk of psychological sequela. Professionals working with these families can be negatively affected on their well-being and are at risk of burnout. DESIGN: The design was a qualitative interview study. METHODS: One focus group and 10 individual semi-structured interviews were conducted with seven family caregivers and nine professionals after the death of a PALS/CIs. The analysis was guided by the interpretive description methodology and the theory of sense of coherence. This study adheres to the COREQ guidelines and the ICMJE recommendations. RESULTS: The family caregivers' challenges regarding coping with everyday needs related to the sick person were associated with 'Accepting that nothing else matters', 'Adjusting to new roles while balancing', and 'Realizing different values in relationships'; whereas the professionals' challenges were related to 'Collaboration a balancing act', 'Working in a home of sorrow', and 'Coordinating threads to tie'. CONCLUSION: Family caregivers found coping with the complexity of the diseases a challenge, and their everyday life needed constant adjustment to new roles, coping with inappropriate behavior, and navigating through the progression of the diseases of their sick relatives while collaborating with numerous professionals. The professionals struggled with coordinating and collaborating with the families and with other colleagues due to the severeness and complexity of diseases. RELEVANCE TO CLINICAL PRACTICE: Findings point to the importance of relationships for caregivers and professionals and a need to provide support through an online palliative rehabilitation program that encompass coping strategies in relation to the diseases. TRIAL REGISTRATION DETAILS: Id no. NCT04638608.