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.

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

“…7,23,26,39,48,51 When family members began receiving formal care, the change in role for carers also at times caused tensions. 37,52…”

“…Carers often acted as an information broker, transmitting information between the person being cared for and health and social care practitioners, and this responsibility often increased as the condition deteriorated. 10,21,23,52,53 At times of crisis, carers were often responsible for attempting to ensure that stated wishes on issues such as resuscitation were respected. 22,42 The majority of studies included in this review focused on a single carer, typically a partner.…”

“…42 Carers were also often unsure who, from a multitude of professionals, they should approach to discuss end of life. 7,23,24,[50][51][52] Confusion about responsibility for sharing information about end of life could be exacerbated by factors such as poorly integrated services, lack of confidence amongst professionals and a lack of clarity about what had already been shared. 50 Paradoxically, some studies also highlighted risks associated with being given excessive information, such as information that was unwanted, poorly-timed, or poorlydelivered.…”

“…Carers often experienced accessing services as longwinded or disjointed, especially when managing the process at critical points in their relative's illness and care trajectory. 7,10,[48][49][50]52,56 The point of diagnosis was frequently cited as a moment where carers would have valued additional emotional and practical support. 10,34,48,49,57 Through the course of long-term neurological conditions, families/carers consistently cited difficulties in accessing a range of support including, for example, infrequent contact with specialist clinics and opportunities for families to talk with professionals in depth; 7,26,50,51 a lack of appropriate care services, 23,36,56 a lack of a whole family approach to support 26 and poor access to palliative or specialist support services.…”

“…7,23,26,39,48,51 When family members began receiving formal care, the change in role for carers also at times caused tensions. 37,52 Access to palliative care frequently occurred late in the illness trajectory. 48,50,59 Poor awareness of palliative care services and frequent misperceptions that they were only for people who were dying or for people who had cancer, served as barriers to proactively accessing palliative care.…”