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Experiences among children and adolescents of living with spina bifida and their visions of the future
Linköping University, Department of Medical and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Child and Adult Habilitation in Norrköping. Linköping University, Faculty of Medicine and Health Sciences.
Linköping University, Department of Medical and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care. Linköping University, Faculty of Medicine and Health Sciences.
Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care. Region Östergötland, Heart and Medicine Center, Department of Dermatology and Venerology.ORCID iD: 0000-0001-8336-9767
Linköping University, Department of Science and Technology, Media and Information Technology. Linköping University, The Institute of Technology.ORCID iD: 0000-0003-1032-2145
2017 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 39, no 3, 261-271 p.Article in journal (Refereed) Published
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Abstract [en]

Purpose: Transitioning to independence may be problematic for persons with spina bifida (SB). Experiences of young persons with SB may provide insights into this group's needs for support. Therefore, the aim of this study was to investigate children'€™s and adolescents' experiences of living with SB, their social and emotional adjustment, and their thoughts about becoming independent adults. Method: Semi-structured interviews were conducted with young persons with SB (N = 8, age range 10 - 17 years). Social and emotional problems were assessed using Beck Youth Inventories. The interview transcripts were analyzed using qualitative content analysis. Results: Three main themes were found: being a person with SB; everyday living as a person with SB; and preparing for life as an adult with SB. Indications of emotional and social problems were most prominent among participants with milder physical disability. Conclusions: The findings indicate that young persons with SB may overestimate their independence. Other potentially problematic areas were lack of motivation, planning and preparedness for becoming independent. Research on transition to independence in this group should consider assistance at an early age in planning and executing strategies for independence. In addition, the potentially difficult situation for young persons with mild SB should be investigated further.

Place, publisher, year, edition, pages
Taylor & Francis, 2017. Vol. 39, no 3, 261-271 p.
Keyword [en]
spina bifida, independence, qualitative content analysis, children, adolescents, adjustment
National Category
Social Work Occupational Therapy
Identifiers
URN: urn:nbn:se:liu:diva-125792DOI: 10.3109/09638288.2016.1146355ISI: 000392480400006PubMedID: 26939640OAI: oai:DiVA.org:liu-125792DiVA: diva2:909055
Note

Funding agencies: Swedish Inheritance Fund, County Council of Ostergotland; Research Fund of the Linkoping University Hospital

Available from: 2016-03-04 Created: 2016-03-04 Last updated: 2017-02-21Bibliographically approved

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Strömfors, LinaWilhelmsson, SusanFalk, LarsHöst, Gunnar E.
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Department of Medical and Health SciencesDepartment of Child and Adult Habilitation in NorrköpingFaculty of Medicine and Health SciencesResearch & Development Unit in Local Health CareDivision of Neuro and Inflammation ScienceDepartment of Dermatology and VenerologyMedia and Information TechnologyThe Institute of Technology
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CiteExportLink to record
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