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dc.contributor.authorGrose, Jen
dc.contributor.authorFreeman, Jen
dc.contributor.authorMarsden, Jen
dc.date.accessioned2013-12-07T11:22:13Z
dc.date.accessioned2013-12-07T11:24:40Z
dc.date.available2013-12-07T11:22:13Z
dc.date.available2013-12-07T11:24:40Z
dc.date.issued2014en
dc.identifier.urihttp://hdl.handle.net/10026.1/2847
dc.description.abstract

PURPOSE: Hereditary Spastic Paraplegia (HSP) is an inherited nervous system disorder characterized by development of leg weakness, spasms and stiffness. While generally acknowledged that health and social care services can minimise symptoms and improve quality of life, there is a lack of research exploring this from the perspective of people affected by HSP. This qualitative study explored the users and providers experience of using rural services. METHOD: Focus groups and interviews were undertaken of people with HSP (n = 14), carers (n = 6) and professionals (n = 12), to describe their experience of service provision and to suggest improvements for care. These were taped, transcribed and analysed. RESULTS: Four themes emerged: (1) Diagnosis, symptoms and finding support; (2) Therapy, treatment and the delivery of care; (3) Managing the disease together; and (4) The way forward. CONCLUSIONS: Rehabilitation and support for self-management is valued by those affected with HSP throughout the disease trajectory from diagnosis onwards. Key to this is the development of a partnership approach which includes carers. Single point, well-informed, gatekeepers may enhance the coordination and delivery of care in rural areas. These findings underline current guidance promoting a holistic approach for people with neurological conditions.

en
dc.format.extent907 - 913en
dc.languageengen
dc.language.isoengen
dc.relation.replaceshttp://hdl.handle.net/10026.1/2846
dc.relation.replaces10026.1/2846
dc.subjectCarersen
dc.subjecthealth servicesen
dc.subjecthereditary spastic paraparesisen
dc.subjectneurological conditionsen
dc.subjectruralen
dc.subjectAdulten
dc.subjectAgeden
dc.subjectAged, 80 and overen
dc.subjectCaregiversen
dc.subjectDelivery of Health Careen
dc.subjectEnglanden
dc.subjectFemaleen
dc.subjectFocus Groupsen
dc.subjectHealth Services Needs and Demanden
dc.subjectHumansen
dc.subjectMaleen
dc.subjectMiddle Ageden
dc.subjectQualitative Researchen
dc.subjectQuality Improvementen
dc.subjectQuality of Lifeen
dc.subjectRural Health Servicesen
dc.subjectRural Populationen
dc.subjectSocial Worken
dc.subjectSpastic Paraplegia, Hereditaryen
dc.titleService delivery for people with hereditary spastic paraparesis living in the South West of England.en
dc.typeJournal Article
plymouth.author-urlhttps://www.ncbi.nlm.nih.gov/pubmed/23944176en
plymouth.issue11en
plymouth.volume36en
plymouth.publication-statusPublisheden
plymouth.journalDisabil Rehabilen
dc.identifier.doi10.3109/09638288.2013.824032en
plymouth.organisational-group/Plymouth
plymouth.organisational-group/Plymouth/00 Groups by role
plymouth.organisational-group/Plymouth/00 Groups by role/Academics
plymouth.organisational-group/Plymouth/00 Groups by role/Professional Services staff
plymouth.organisational-group/Plymouth/Faculty of Health and Human Sciences
plymouth.organisational-group/Plymouth/Faculty of Health and Human Sciences/School of Health Professions
plymouth.organisational-group/Plymouth/Faculty of Health and Human Sciences/School of Nursing and Midwifery
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
dc.publisher.placeEnglanden
dc.identifier.eissn1464-5165en
dc.rights.embargoperiodNot knownen
rioxxterms.versionofrecord10.3109/09638288.2013.824032en
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserveden
rioxxterms.typeJournal Article/Reviewen


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