Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation—A qualitative study

Abstract

AIMS AND OBJECTIVES: To explore everyday life experience of relatives of people with amytrophic lateral sclerosis (ALS) living at home with mechanical ventilation and formal caregivers. BACKGROUND: ALS is a rapidly progressive disease affecting not only the patient but also close relatives. A burden is placed on relatives affecting their mental and physical health in settings where they provide care. Few studies have examined the everyday life challenges of close relatives with formal caregivers at home and home mechanical ventilation, which often prolongs survival. DESIGN: We undertook a qualitative study with a phenomenological-hermeneutic approach inspired by Ricoeur. Eleven close relatives were interviewed, and the three-level analysis method developed by Dreyer and Pedersen was conducted. The Consolidated Criteria for Reporting Qualitative Research checklist was used. RESULTS: Four themes were derived from the data during analysis: Vulnerable relatives fighting to keep track of everything, Formal caregivers-a distressing relief, A prison without personal space and We are in this together until the end. CONCLUSIONS: Close relatives of persons with ALS are burdened with everyday life challenges despite having formal caregivers at home, and they feel imprisoned. Despite these challenges and concerns about the end of life of their relative, they stay until the end. RELEVANCE TO CLINICAL PRACTICE: There is clearly a need to investigate interventions in clinical practice supporting close relatives to prepare them for what to expect during a prolonged disease course.