Family Caregivers’ Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India

Abstract

Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers’ experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage. In-depth interviews were conducted with seven bereaved caregivers of individuals with MND from a national tertiary referral care center for neuropsychiatry in South India. Interviews were conducted either in person or by telephone. Thematic analysis was done using the constant comparative method. Major themes derived from the interviews were: (1) Transition from person to patient, (2) support, (3) death, and (4) impact on the caregivers. Mapping of themes identified “Support received during advanced stages” as the central theme influencing all other themes. The need for a care manager seems evident and is a role that can be effectively fulfilled by the care teams’ social workers.

Keywords:

• Palliative care
• motor neuron disease
• advanced stages
• family caregiver
• neurological illness
• India

Acknowledgments

The authors appreciate greatly the contribution of the patients and carers who took part in this study.

Disclosure statement

Authors declare that there is no conflict of interest.

Additional information

Funding

We are grateful to the Indian Council of Medical Research for the funding support.