Non-finite loss and emotional labour: family caregivers' experiences of living with motor neurone disease.

AIM AND OBJECTIVES: This paper aims to add to nurses' knowledge concerning the losses and emotional labour family caregivers face caring for people living with neurodegenerative, life-limiting illnesses such as motor neurone disease.

BACKGROUND: Motor neurone disease is a relentless, progressive illness resulting in progressive loss of voluntary muscle mass and function. Previous caregiver research presents the salient losses such as social, financial and relationship loss. However, the non-finite, unpredictable losses faced every day by caregivers and the emotional labour experienced are not effectively represented and have not been explored for caregivers of adult patients with life-limiting, degenerative, illness.

DESIGN/METHODS: Semi-structured interviews, ecomaps of social support networks and field notes were used to collect data for this ethnographic case study. Data were attained at three time points over a 10-month period from 18 primary caregivers and once from six peripheral caregivers.

RESULTS: Data revealed new information about the psychosocial and emotional losses experienced daily, when living with motor neurone disease. The impact of the constancy of voluntary muscle degeneration and the uncertainty of the illness progression in terms of available time and functional loss, threatened people's understanding and expectations of life, their relationships, their personal identity and their future. Managing their relationship with the patient and their reactions to the devastation of motor neurone disease is consistent with the concept of emotional labour.

CONCLUSIONS: Family caregivers living with relentless, life-limiting illness experience non-finite losses and emotional labour on a daily basis. While each individual's experience of loss is unique, nurses need to include caregivers as well as patients, in their spectrum of supportive care.

RELEVANCE TO CLINICAL PRACTICE: Nurses can be independent confidants who share the emotional labour and work with caregivers to develop interventions to assist them to manage their losses and their changing needs for psychological and emotional support.