Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

Marie Törnbom; Ulrica Jonsson; Katharina Stibrant Sunnerhagen

doi:10.1080/15017419.2012.703968

Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

Scandinavian Journal of Disability Research

Volume 15 (2013): Issue 3

By: Marie Törnbom, Ulrica Jonsson and Katharina Stibrant Sunnerhagen

Open Access

|Aug 2013

Andersson , C. and Mattsson , E. 2001 . Adults with cerebral palsy: A survey describing problems, needs, and resources, with special emphasis on locomotion . Developmental Medicine and Child Neurology , 43 ( 2 ) : 76 – 82 .
Search in Google Scholar Back to article
Barron K. , D. Michailakis , and M. Söder . 2000 . Funktionshindrade och den offentliga hjälpapparaten (Persons with disability and the public system of assistance) . In : Välfärd, vård och omsorg (Welfare, nursing and care- state report) SOU 38 : 137 – 70 .
Search in Google Scholar Back to article
Binks , J.A. , Barden , W.S. , Burke , T.A. and Young , N.L. 2007 . What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida . Archives of Physical Medicine and Rehabilitation , 88 ( 8 ) : 1064 – 73 .
Search in Google Scholar Back to article
Braddock , D. 1999 . Aging and developmental disabilities: Demographic and policy issues affecting American families . Mental Retardation , 37 : 155 – 61 .
Search in Google Scholar Back to article
Convention on the Rights of Persons with Disabilities . 2006 December . Available from: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Convention.aspx .
Search in Google Scholar Back to article
Dicianno , B.E. , Kurowski , B.G. , Yang , J.M.J. , Chancellor , M.B. , Bejjani , G.K. , Fairman , A.D. , Lewis , N. and Sotirake , J. 2008 . Rehabilitation and medical management of the adult with spina bifida . American Journal of Physical Medicine and Rehabilitation , 87 ( 12 ) : 1026 – 34 .
Search in Google Scholar Back to article
Dunér , A. and Nordström , M. 2006 . The discretion and power of street-level bureaucrats: An example from Swedish municipal eldercare . European Journal of Social Work , 9 ( 4 ) : 425 – 44 .
Search in Google Scholar Back to article
Engel , J.M. , Kartin , D. and Jensen , M.P. 2002 . Pain treatment in persons with cerebral palsy: Frequency and helpfulness . American Journal of Physical Medicine and Rehabilitation , 81 : 291 – 96 .
Search in Google Scholar Back to article
Grahn , B. and Gard , G. 2008 . Content and concurrent validity of the Motivation for Change questionnaire . Journal of Occupational Rehabilitation , 18 : 68 – 78 .
Search in Google Scholar Back to article
Jahnsen , R. , Villien , L. , Aamodt , G. , Stanghelle , J. and Holm , I. 2004a . Musculosketal pain in adults with cerebral palsy compared with the general population . Journal of Rehabilitation Medicine , 36 : 78 – 84 .
Search in Google Scholar Back to article
Jahnsen , R. , Villien , L. , Egeland , T. , Stanghelle , J.K. and Holm , I. 2004b . Locomotion skills in adults with cerebral palsy . Clinical Rehabilitation , 18 ( 3 ) : 309 – 16 .
Search in Google Scholar Back to article
Larsson , K. 2004 . According to need? Predicting use of formal and informal care in a Swedish urban elderly population . PhD dissertation , University of Stockholm .
Search in Google Scholar Back to article
Liptak , G.S. 2008 . Health and well being of adults with cerebral palsy . Current Opinion in Neurology , 21 ( 2 ) : 136 – 42 .
Search in Google Scholar Back to article
Munir , D. 2006 . Unga människor med rörelsehinder-förankring, marginalisering och social exkludering [A study of young persons with disabilities outside the labour market – inclusion, marginalisation and social exclusion] , PhD dissertation , University of Örebro .
Search in Google Scholar Back to article
Mänskliga rättigheter för personer med funktionshinder (Human rights of persons with disabilities) Prop.2008/09:28 . (Government bill) 2008 : 1 – 163 .
Search in Google Scholar Back to article
Nieuwenhuijsen , C. , van der Laar , Y. , Donkervoor , M. , Nieuwstraten , W. , Roebroeck , M.E. and Stam , H.J. 2008 . Unmet needs and health care utilization in young adults with cerebral palsy . Disability and Rehabilitation , 30 ( 17 ) : 1254 – 62 .
Search in Google Scholar Back to article
Oakeshott , P. , Hunt , M.G. , Poulton , A. and Reid , F. 2010 . Expectation of life and unexpected death in open spina bifida: A 40-year complete, non-selective, longitudinal cohort study . Developmental Medicine and Child Neurology , 52 ( 8 ) : 749 – 53 .
Search in Google Scholar Back to article
Rivera , P.A. , Elliott , T.R. , Berry , J.W. , Shewchuk , R.M. , Oswald , K.D. and Grant , J. 2006 . Family caregivers of women with physical disabilities . Journal of Clinical Psychology in Medical Settings , 13 ( 4 ) : 425 – 34 .
Search in Google Scholar Back to article
Statistics Sweden . 2009 . Information om utbildning och arbetsmarknad (Information about education and labour market) Labour market situation for 10disabled persons-4^th quarter 2008 .
Search in Google Scholar Back to article
Statistics Sweden . 2010 . Available from: http://www.scb.se/statistik/_publikationer/OV0904_2010A01_BR_22_A01BR1001.pdf .
Search in Google Scholar Back to article
Strauss , D. and Shavelle , R. 1998 . Life expectance of adults with cerebral palsy . Developmental medicine and Child Neurology , 40 ( 6 ) : 369 – 75 .
Search in Google Scholar Back to article
Strauss , D. , Shavelle , R. , Reynolds , R. , Rosenbloom , L. and Day , S. 2007 . Survival in cerebral palsy in the last 20 years: Signs of improvement? . Developmental medicine and Child Neurology , 49 : 86 – 92 .
Search in Google Scholar Back to article
Vogtle , L.K. 2009 . Pain in adults with cerebral palsy: Impact and solutions . Developmental Medicine and Child Neurology , 51 ( suppl 4 ) : 113 – 21 .
Search in Google Scholar Back to article
Vuxenhabiliteringen in Göteborg (Adult habilitation unit in Göteborg) . 2009 . Available from: http://www.vgregion.se .
Search in Google Scholar Back to article
Whitaker , A. 2008 . “ Ett liv aldrig mer som andras – föräldraskap, funktionshinder och åldrande. [A life never more like others – Parenthood, disability and aging] ” . In Att åldras med funktionshinder [Aging with a disability] , Edited by: Jeppsson Grassman , E. 125 – 63 . Pozkal : Poland .
Search in Google Scholar Back to article
White , P. 2002 . Access to health care: Health insurance considerations for young adults with special health care needs/disabilities . Pediatrics , 110 ( 6 ) : 1328 – 35 .
Search in Google Scholar Back to article
Young , N. , Barden , W. , Mills , W. , Burke , T. , Law , M. and Boydell , K. 2009 . Transition to adult-oriented health care: Perspectives of youth and adults with complex physical disabilities . Physical & Occupational Therapy in Pediatrics , 29 ( 4 ) : 345 – 61 .
Search in Google Scholar Back to article

Authors

Metrics

Articles in this issue

DOI: https://doi.org/10.1080/15017419.2012.703968 | Journal eISSN: 1745-3011

Journal RSS Feed

Language: English

Page range: 249 - 263

Submitted on: Sep 19, 2011

Accepted on: Jun 14, 2012

Published on: Aug 3, 2013

Published by: Stockholm University Press

In partnership with: Paradigm Publishing Services

Keywords:

activities of daily living,

access to health care,

cerebral palsy,

health and social care,

patient satisfaction,

physical disabilities

© 2013 Marie Törnbom, Ulrica Jonsson, Katharina Stibrant Sunnerhagen, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.

Volume 15 (2013): Issue 3