Skip to content

Toggle service links

You are here

  1. Home
  2. Family Caregivers' Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India

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

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.

Access source material through DOI

Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
Taylor & Francis
ISBN/ISSN
1552-4256
Publication Year
2019
Issue Number
2-3
Journal Titles
Journal of Social Work in End-of-Life & Palliative Care
Volume Number
15
Start Page
111
End Page
125