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Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair: an interview study
Malmo Univ, Sweden.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Cty Hosp Ryhov, Sweden.
Uppsala Univ, Sweden.
2019 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 41, no 19, p. 2289-2298Article in journal (Refereed) Published
Abstract [en]

Purpose: To describe perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support to manage daily life and using a wheelchair for ambulation, from the affected young adults and their parents perspectives. Method: A qualitative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy and 19 parents. Phenomenography was used for data analysis. Results: The diagnosis was described as being a shock and difficult to comprehend but also as a relief and a tool for information. Beginning to use a wheelchair was perceived to be mentally difficult but it also provided freedom. New ways of living involved physical, emotional, practical, and social difficulties as well as experiences of learning to adapt to the disease. The transition was overshadowed by concern about disease progression and influenced by facilitating factors, which were young adult being seen as a person; supportive family and friends; mobilized internal resources; meaningful daily activities; adapted environment; and professional support. Conclusions: The different perceptions expressed in this study highlight the importance of identifying personal perceptions and needs in order to optimize support provided by healthcare professionals.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD , 2019. Vol. 41, no 19, p. 2289-2298
Keywords [en]
Disability; LGMD2; parents; phenomenography; transition; young adults
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-158911DOI: 10.1080/09638288.2018.1464602ISI: 000472585200007PubMedID: 29688081OAI: oai:DiVA.org:liu-158911DiVA, id: diva2:1338211
Note

Funding Agencies|Linnaeus University, Sweden

Available from: 2019-07-20 Created: 2019-07-20 Last updated: 2019-08-15

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