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Follow-up of individuals with cerebral palsy through the transition years and description of adult life: the Swedish experience.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland.
2014 (English)In: Journal of pediatric rehabilitation medicine, ISSN 1875-8894, Vol. 7, no 1, 53-61 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP.

METHODS: A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS).

RESULTS: Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS (r(s) =0.71) and MACS (r(s) = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II.

CONCLUSION: Some young adults with CP and severe functional limitations manage independent living - however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother.

Place, publisher, year, edition, pages
2014. Vol. 7, no 1, 53-61 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:uu:diva-263103OAI: oai:DiVA.org:uu-263103DiVA: diva2:856926
Available from: 2015-09-25 Created: 2015-09-25 Last updated: 2015-09-25

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Rodby-Bousquet, Elisabet
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