Show simple item record

dc.contributor.authorFreeman, Jennifer
dc.contributor.authorGorst, T
dc.contributor.authorGunn, Hilary
dc.contributor.authorRobens, S
dc.date.accessioned2019-02-26T10:08:01Z
dc.date.issued2019-01-18
dc.identifier.issn0963-8288
dc.identifier.issn1464-5165
dc.identifier.urihttp://hdl.handle.net/10026.1/13355
dc.description.abstract

PURPOSE: To gain insight into the experiences of, and potential solutions to, social isolation amongst severely impaired people with multiple sclerosis. METHODS: A phenomenological research approach using face-to-face, in-depth semi-structured, audio-recorded interviews. Data were transcribed and analyzed thematically. RESULTS: Sixteen severely impaired people with multiple sclerosis were interviewed (Expanded Disability Status Scale >6.5); aged 38-72 years, nine female, time since diagnosis ranged 3-30 years). Four key themes were generated in line with the study objectives, each with further sub-themes. The themes were (1) Definitions of isolation (2) Causes of isolation (3) Impact of isolation, and (4) Potential eases of isolation. CONCLUSIONS: Data portrayed social isolation as complex and multi-factorial in its definitions, its causes, and its impact. Isolation is not just about being lonely or left on one's own, but represents a spiral of impacts. Physical deterioration can lead to reduced choice and control regarding access to, and interaction with others and society, affecting personal identity. Sometimes this leads to further self-isolation. Personalised psychosocial support, with improved ease of access, focused on helping people with severe multiple sclerosis regain a sense of self and their place in the world may ease social isolation. Implications for rehabilitation People with severe multiple sclerosis can experience a sense of powerlessness, a lack of choice and control over daily life, leading to changes in self-identity and social isolation. Peoples' experiences are very personal, and any approach to help deal with social isolation needs to be based in considering how to think positively about how life can be lived and how to make that work. Multiple sclerosis support groups should not be assumed to alleviate feelings of social isolation. Interventions should focus on personalized psychosocial input aimed at helping the person with multiple sclerosis regain a sense of self and their place in the world.

dc.format.extent1-9
dc.format.mediumPrint-Electronic
dc.languageen
dc.language.isoen
dc.publisherTaylor & Francis
dc.subjectMultiple sclerosis
dc.subjectpatient experience
dc.subjectsocial isolation
dc.title"A non-person to the rest of the world": experiences of social isolation amongst severely impaired people with multiple sclerosis.
dc.typejournal-article
dc.typeJournal Article
plymouth.author-urlhttps://www.ncbi.nlm.nih.gov/pubmed/30657717
plymouth.issue16
plymouth.volume42
plymouth.publication-statusPublished
plymouth.journalDisability and Rehabilitation
dc.identifier.doi10.1080/09638288.2018.1557267
plymouth.organisational-group/Plymouth
plymouth.organisational-group/Plymouth/Faculty of Health
plymouth.organisational-group/Plymouth/Faculty of Health/School of Health Professions
plymouth.organisational-group/Plymouth/REF 2021 Researchers by UoA
plymouth.organisational-group/Plymouth/REF 2021 Researchers by UoA/UoA03 Allied Health Professions, Dentistry, Nursing and Pharmacy
plymouth.organisational-group/Plymouth/Research Groups
plymouth.organisational-group/Plymouth/Research Groups/Institute of Health and Community
plymouth.organisational-group/Plymouth/Research Groups/Plymouth Institute of Health and Care Research (PIHR)
plymouth.organisational-group/Plymouth/Users by role
plymouth.organisational-group/Plymouth/Users by role/Academics
plymouth.organisational-group/Plymouth/Users by role/Researchers in ResearchFish submission
dc.publisher.placeEngland
dcterms.dateAccepted2018-12-05
dc.rights.embargodate2020-1-18
dc.identifier.eissn1464-5165
dc.rights.embargoperiodNot known
rioxxterms.versionofrecord10.1080/09638288.2018.1557267
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserved
rioxxterms.licenseref.startdate2019-01-18
rioxxterms.typeJournal Article/Review


Files in this item

Thumbnail
Thumbnail

This item appears in the following Collection(s)

Show simple item record


All items in PEARL are protected by copyright law.
Author manuscripts deposited to comply with open access mandates are made available in accordance with publisher policies. Please cite only the published version using the details provided on the item record or document. In the absence of an open licence (e.g. Creative Commons), permissions for further reuse of content should be sought from the publisher or author.
Theme by 
Atmire NV