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

Abstract

Purpose

The 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 methods

Participants 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.

Results

Thirty 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.

Conclusions

Adults 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.

Implications for rehabilitation

• Adults with cerebral palsy (CP) reported that their disability had an impact on their social life, home life, and work life.

• Accessibility issues have been identified as a major factor affecting adults with CP in a variety of areas, including access to and use of health services, housing, transportation, and community buildings.

• Adults with CP reported the need for support during the transition to adulthood, especially with developing life skills that will promote living independently in the community as adults with disabilities.

Keywords:

• Cerebral palsy
• adolescents
• adults
• unmet needs
• challenges
• transition
• access

Disclosure statement

No potential competing interest was reported by the authors.

Additional information

Funding

This work was supported by the National Research Foundation, Pretoria, South Africa as well as the Neuroscience Institute, University of Cape Town, South Africa.