{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,18]],"date-time":"2026-09-18T19:33:18Z","timestamp":1789759998836,"version":"4.0.1"},"reference-count":36,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001411","name":"Indian Council of Medical Research","doi-asserted-by":"publisher","award":["2013-1161"],"award-info":[{"award-number":["2013-1161"]}],"id":[{"id":"10.13039\/501100001411","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Patient Experience"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:p>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\u2019 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.<\/jats:p>","DOI":"10.1177\/23743735221077535","type":"journal-article","created":{"date-parts":[[2022,2,2]],"date-time":"2022-02-02T12:51:16Z","timestamp":1643806276000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context"],"prefix":"10.1177","volume":"9","author":[{"given":"Manjusha G","family":"Warrier","sequence":"first","affiliation":[{"name":"Department of Psychology, Christ University, Bangalore, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Priya Treesa","family":"Thomas","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, NIMHANS, Bangalore, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arun","family":"Sadasivan","sequence":"additional","affiliation":[{"name":"Sampurna Montfort College, Bangalore, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saraswati","family":"Nashi","sequence":"additional","affiliation":[{"name":"Department of Neurology, NIMHANS, Bangalore, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Seena","family":"Vengalil","sequence":"additional","affiliation":[{"name":"Department of Neurology, NIMHANS, Bangalore, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2421-7303","authenticated-orcid":false,"given":"A.","family":"Nalini","sequence":"additional","affiliation":[{"name":"Department of Neurology, NIMHANS, Bangalore, India"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,2,2]]},"reference":[{"key":"bibr1-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00586.x"},{"key":"bibr2-23743735221077535","first-page":"e1213","volume":"9","author":"Irfan B","year":"2017","journal-title":"Cureus"},{"key":"bibr3-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1177\/0269216315575851"},{"key":"bibr4-23743735221077535","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2010.546414"},{"key":"bibr5-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-014985"},{"key":"bibr6-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1002\/ijop.12085"},{"key":"bibr7-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311410900"},{"key":"bibr8-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-1331.2010.03016.x"},{"key":"bibr9-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2377-12-156"},{"key":"bibr10-23743735221077535","doi-asserted-by":"publisher","DOI":"10.4103\/0366-6999.163393"},{"key":"bibr11-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-015-7746-z"},{"key":"bibr12-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1080\/17482960801934148"},{"key":"bibr13-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2014.0213"},{"key":"bibr14-23743735221077535","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2012.719236"},{"key":"bibr15-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291706007124"},{"key":"bibr16-23743735221077535","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2015.1051990"},{"key":"bibr17-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1037\/a0018132"},{"key":"bibr18-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1186\/1472-684X-13-12"},{"key":"bibr19-23743735221077535","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2014.971811"},{"key":"bibr20-23743735221077535","doi-asserted-by":"publisher","DOI":"10.1186\/s40359-019-0308-x"},{"key":"bibr21-23743735221077535","unstructured":"National Clinical Guideline Centre. 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