Exploring the unmet needs of adults with cerebral palsy living in urban South Africa

被引:1
作者
Salie, Roshaan [1 ,2 ]
Kleintjes, Sharon [1 ,3 ]
Eken, Maaike M. [4 ]
Donald, Kirsten A. [1 ,2 ]
Fieggen, A. Graham [1 ,2 ]
Langerak, Nelleke G. [1 ,2 ]
机构
[1] Univ Cape Town, Neurosci Inst, Fac Hlth Sci, Cape Town, South Africa
[2] Univ Cape Town, Fac Hlth Sci, Div Neurosurg, Cape Town, South Africa
[3] Univ Cape Town, Fac Hlth Sci, Dept Psychiat & Mental Hlth, Div Intellectual Disabil, Cape Town, South Africa
[4] Stellenbosch Univ, Fac Med & Hlth Sci, Dept Surg Sci, Div Orthopaed Surg,Inst Sport & Exercise Med, Cape Town, South Africa
基金
新加坡国家研究基金会;
关键词
Cerebral palsy; adolescents; adults; unmet needs; challenges; transition; access; DISABLED PEOPLE; HEALTH; MUSCULOSKELETAL; CHILDREN; MET;
D O I
10.1080/09638288.2023.2177358
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
PurposeThe investigators aimed to understand the unmet needs of adults with cerebral palsy (CP) living in urban South Africa and to ascertain similarities or differences to typically developing (TD) adults in the same community.Materials and methodsParticipants were interviewed with an adapted version of the Southampton Needs Assessment Questionnaire (SNAQ). Non-parametric statistical analysis was utilised for quantitative data and qualitative data were analysed using free coding to identify themes.ResultsThirty adults with CP (median age 34.8 years; GMFCS levels I/II/III/IV/V: n = 6/6/5/7/6; socio-economic status (SES) low/average/high: n = 8/17/5) were matched for gender, age, and SES. Adults with CP reported a higher unemployment rate and lower level of satisfaction with access to health services than TD peers. Core themes identified by the participants with CP that made community participation more difficult were physical capacity, poor access to accommodation, transport and health services, lack of socialising opportunities, poor universal design, and lack of financial independence.ConclusionsAdults with CP reported experiencing many challenges in their communities. Improved access to health care services and transport, and the universal design of housing and community buildings to accommodate individuals with a disability should be made a priority.
引用
收藏
页码:741 / 749
页数:9
相关论文
共 33 条
  • [1] Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion
    Andersson, C
    Mattsson, E
    [J]. DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY, 2001, 43 (02) : 76 - 82
  • [2] Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy
    Benner, Joyce L.
    Hilberink, Sander R.
    Veenis, Thessa
    Stam, Henk J.
    van der Slot, Wilma M.
    Roebroeck, Marij E.
    [J]. ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION, 2017, 98 (11): : 2196 - 2205
  • [3] Course of employment in adults with cerebral palsy over a 14-year period
    Benner, Joyce L.
    Hilberink, Sander R.
    Veenis, Thessa
    van der Slot, Wilma M. A.
    Roebroeck, Marij E.
    [J]. DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY, 2017, 59 (07) : 762 - 768
  • [4] Community participation and public transportation barriers experienced by people with disabilities
    Bezyak, Jill Louise
    Sabella, Scott
    Hammel, Joy
    McDonald, Katherine
    Jones, Robin Ann
    Barton, Dana
    [J]. DISABILITY AND REHABILITATION, 2020, 42 (23) : 3275 - 3283
  • [5] Functional status of adults with cerebral palsy and implications for treatment of children
    Bottos, M
    Feliciangeli, A
    Sciuto, L
    Gericke, C
    Vianello, A
    [J]. DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY, 2001, 43 (08) : 516 - 528
  • [6] The contribution of open comments to understanding the results from the Hospital Survey on Patient Safety Culture (HSOPS): A qualitative study
    Boussat, Bastien
    Kamalanavin, Kevin
    Francois, Patrice
    [J]. PLOS ONE, 2018, 13 (04):
  • [7] Burton Adrian, 2015, Lancet Neurol, V14, P876, DOI 10.1016/S1474-4422(15)00189-1
  • [8] Qualitative analysis of 6961 free-text comments from the first National Cancer Patient Experience Survey in Scotland
    Cunningham, Maggie
    Wells, Mary
    [J]. BMJ OPEN, 2017, 7 (06):
  • [9] Adults with spastic diplegic cerebral palsy living in a low-to-middle income country: A six-year follow-up study on pain, functional mobility, activity and participation
    du Toit, Jacques
    Eken, Maaike M.
    Lamberts, Robert P.
    Langerak, Nelleke G.
    [J]. DISABILITY AND HEALTH JOURNAL, 2021, 14 (04)
  • [10] Falkmer T., 2000, J TRAFFIC MED, V28, P23