Living well: exploring experiences of carers of people with motor neurone disease attending an early-access support group

Abstract

Motor neurone disease is associated with rapid disease progression and disability, and receiving a diagnosis can cause shock and fear in the patient and their carers. Prompt access to services and psychological support are important to improving quality of life in individuals with motor neurone disease and their carers. The early-access Living Well support group, led by an occupational therapist and a registered nurse, was developed to support people with motor neurone disease and their carers. The objective of this study was to explore the carers’ lived experiences of being part of this support group. Qualitative semi-structured interviews were conducted with eight carers who attended the Living Well group, using a phenomenological research design. These carers had attended a minimum of two sessions with a relative with motor neurone disease. Thematic analysis was used to examine the data. Five key themes were generated from the study: diagnosis and fear of hospice; being human; connection with others; escapism; and access to expertise. These themes emphasised the importance of personalisation of support groups that meet the specific needs of those living with motor neurone disease and their carers. The findings of this study have implications for palliative care services and occupational therapists who work to improve the quality of life for people living with motor neurone disease and their carers. A more holistic approach towards palliative care, including the involvement of carers in support groups similar to Living Well, is strongly recommended.