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

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 rehabilitationAdults 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.

Pain, health-related quality of life, and mental health of adolescents and adults with cerebral palsy in urban South Africa.

PURPOSE: The aim of this study was to investigate the prevalence and level of disability due to pain, health-related quality of life (HRQoL) and mental health in adolescents and adults with cerebral palsy (CP), living in a low-to-middle income country (LMIC), compared to matched typically developing (TD) peers, and to explore associations with individual characteristics. MATERIALS AND METHODS: This case-control study included 31 adolescents and 30 adults with CP (gross motor function classification system [GMFCS] Level I-V) and matched TD peers. Assessment tools used were a pain questionnaire, the Oswestry Disability Index (ODI), Short-Form Health Survey (SF-36v2), Hospital Anxiety and Depression Scale (HADS), and General Self Efficacy (GSE) scale. RESULTS: Both CP cohorts reported more frequent pain in their lower limbs, higher level of disability due to pain (total ODI score) and lower perceived physical HRQoL compared to TD peers, while their mental health (mental HRQoL, HADS, and GSE) was not different. CONCLUSIONS: Despite the physical challenges faced by adolescents and adults with CP living in urban South Africa, the mental health scores showed no difference compared to TD peers. Care should be taken to maintain this positive mental state during ageing across their lifespan.IMPLICATIONS FOR REHABILITATIONThe prognosis of individuals with cerebral palsy (CP) has improved over the last three decades and CP should therefore be considered as a lifelong condition.Adolescents and adults with CP living in urban South Africa reported a higher level of disability due to pain and lower physical health-related quality of life compared to typically developing peers, while their level of depression, anxiety, and self-esteem was not different.These results were similar to findings of studies conducted in high-income countries, though it cannot be generalised to other low to middle-income countries with different cultural and government systems.In order to promote healthy ageing across their lifespan, intervention programmes should be considered to improve physical well-being, and care should be taken to maintain their positive mental health.

Physical Activity Levels of Adolescents and Adults With Cerebral Palsy in Urban South Africa.

Background: Research in high income countries shows that people with cerebral palsy (CP) are less physically active than typically developing (TD) peers, but less is known regarding physical activity (PA) in those with CP in low-to-middle income countries. The aim of this study was to determine daily step count and levels of PA in adolescents and adults with CP living in urban South Africa, compared to TD peers, and to determine associations with sex, Gross Motor Function Classification System (GMFCS) level, body mass index and socio-economic status. Materials and Methods: This case-control study included 26 adolescents and 22 adults with CP (GMFCS Level I-V) and matched TD peers (25 and 30, respectively). Participants wore an ActiGraph GT3X for 7 consecutive days to determine step count and time (minutes per hour) spent in PA levels, including sedentary (SED), low physical activity (LPA) and moderate to vigorous physical activity (MVPA). Results: The daily step count and PA levels for ambulant adolescents with CP (GMFCS level I-III) were similar to TD peers, while this was less for adolescents classified in GMFCS level IV-V. Daily step count, SED and MVPA were similar for adults classified in GMFCS level I-II compared to TD adults, while all parameters were lower for adults using assistive devices (GMFCS level III) and non-ambulant adults (GMFCS level IV-V) compared to TD peers. Daily step count and PA levels were inversely associated with GMFCS, while no other associations were found. Conclusion: People with CP who were more mobile dependent (higher GMFCS level) were less active. However, adolescents and adults with CP classified as GMFCS levels I-II living in urban South Africa recorded similar step count and PA levels as their TD peers. This was also the case for adolescents using assistive devices, though not for those in the adult group (GMFCS level III). Furthermore, it was apparent that even the ambulant individuals with CP and TD cohorts were relatively inactive. Intervention programs for CP and TD adolescents should be aimed at finding strategies to keep adolescents physically active well into adulthood, in order to promote physical health, social and emotional well-being and independence.