Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context
- Title
- Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context
- Creator
- Warrier M.G.; Thomas P.T.; Sadasivan A.; Nashi S.; Vengalil S.; Nalini A.
- Description
- Background: The caregivers of persons with motor neuron disease (MND) have several needs that are usually not voiced on any platform. Aim: To explore the lived experience of spouses of persons with MND, identify their needs and develop guidelines for better home-based care. Method: An exploratory study with 3-point in-depth interviews among 13 participants was conducted. Participants were the spouses of persons with MND under treatment at a national quaternary referral center. The interpretative phenomenological analysis identified participants needs. These needs, with literature review synthesis, guided the drafting of guidelines, which was validated by experts. Results: The needs were emotional, social, care systems, and skills. The guidelines developed contained 2 sections (1) Information for the spouses: understanding MND, communication, symptom management, marital relationship, palliative care, and everyday life made easier. (2) Well-being of the spouse caregivers: well-being of the spouse caregivers, self-care, mental health, supporting carers in palliative care, where to find help. Conclusion: The guidelines can be developed as a manual for the caregivers and for training healthcare professionals working with neurodegenerative conditions. The Author(s) 2022.
- Source
- Journal of Patient Experience, Vol-9
- Date
- 2022-01-01
- Publisher
- SAGE Publications Inc.
- Subject
- guidelines; home-based care; interpretative phenomenological analysis; motor neuron disease; spouse caregivers
- Coverage
- Warrier M.G., Department of Psychology, Christ University, Bangalore, India; Thomas P.T., Department of Psychiatric Social Work, NIMHANS, Bangalore, India; Sadasivan A., Sampurna Montfort College, Bangalore, India; Nashi S., Department of Neurology, NIMHANS, Bangalore, India; Vengalil S., Department of Neurology, NIMHANS, Bangalore, India; Nalini A., Department of Neurology, NIMHANS, Bangalore, India
- Rights
- All Open Access; Green Open Access
- Relation
- ISSN: 23743735
- Format
- Online
- Language
- English
- Type
- Article
Collection
Citation
Warrier M.G.; Thomas P.T.; Sadasivan A.; Nashi S.; Vengalil S.; Nalini A., “Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context,” CHRIST (Deemed To Be University) Institutional Repository, accessed November 4, 2025, https://archives.christuniversity.in/items/show/15191.