Ray, Robin A., and Street, Annette F. (2007) Nonfinite loss and emotional labour: family caregivers' experiences of living with motor neurone disease. Journal of Clinical Nursing, 16 (3a). pp. 35-43.

PDF (Published Version) Restricted to Repository staff only

 

28

2

Abstract

Aim and objectives: This paper aims to add to nurses' knowledge concerning the challenges, losses and emotional labour family caregivers face when providing care for people living with motor neurone disease.

Background: While previous caregiver research presents the salient losses such as social, financial and personal relationship loss among caregivers, the nonfinite, unpredictable losses faced every day by caregivers and the emotional labour experienced are not effectively represented and have not been explored for people living with neurodegenerative, life-limiting illnesses such as motor neurone disease.

Design/Methods: Semi-structured interviews, ecomap diagrams of social support networks and observational field notes were all used to collect data for this ethnographic case study. Data were collected at three time points over a ten month period with eighteen primary caregivers and once during that period, with six peripheral caregivers.

Results: Data revealed new information about the psychosocial and emotional losses experienced on a daily basis 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 MND experience nonfinite 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, providing an independent confidant to share the emotional labour and working with them to develop interventions to assist them to manage their losses and their changing needs for psychological and emotional support.

Actions (Repository Staff Only)

Item Control Page