Development of a measure of family-centred care for resource-poor South African settings: the experience of using a modified version of the MPOC-20.

BACKGROUND: The Measure of Processes of Care (MPOC) is a widely used tool to assess parents' self-reported experiences of family-centred behaviours of paediatric rehabilitation services. It has never been used in resource-constrained settings or in a cross-cultural environment where cultural and language differences may complicate effective implementation of family-centred services. In this study, the MPOC-20 was used as the starting point for the development of a measure of family-centred care in disadvantaged South African settings. The objective was to establish to what extent the MPOC-20 needed to be adapted for these settings. METHODS: After modifying MPOC-20 through focus groups, the adapted scale was translated into six local languages. Trained interviewers administered the scale to a convenience sample of 267 caregivers of children aged between 1 and 18 years with a diagnosis of cerebral palsy living in poorly resourced areas in two provinces in South Africa. RESULTS: The modified MPOC-20 was neither reliable nor valid in the new setting. Cronbach's alpha for each of the sub-scales varied between 0.30 and 0.66 while for the test-retest reliability, the Intraclass Correlation Coefficients were between 0.51 and 0.61. The first two criteria for item convergent validity were not met. Repeated multi-trait scaling identified eight items that when combined into a scale [named the MPOC-8(SA)] had acceptable reliability and validity. Factor analysis of the MPOC-8(SA) yielded two factors: an interpersonal factor and an informational factor. CONCLUSIONS: Although extreme caution has to be used when using measures created in one socio-cultural setting in a different context, the MPOC-20 provides a useful starting point for the development of a measure of family-centred care in a poor resourced setting. Caregivers in different settings have more in common than they have differences. However, the process of asking the questions and the words used to capture caregivers' experiences needs to be different.

Unmet health, welfare and educational needs of disabled children in an impoverished South African peri-urban township.

BACKGROUND: Childhood disability in South Africa has failed to receive adequate attention from governmental agencies, such as the health, education and social welfare departments, despite there being more than 1 million disabled children in the country. This study sought to assess the unmet rehabilitation, education and welfare needs of disabled children living in a peri-urban township. METHODS: As no register of disabled children existed, snowball sampling was used to recruit a convenience sample of 156 disabled children living in Orange Farm township near Soweto, South Africa. Children's impairments, their health and educational needs, and the availability and utilization of services were assessed using a structured interview. RESULTS: Few disabled children attended pre-school (35%) or school (44%). Only a quarter (26%) of children in need of rehabilitation received such services. Children with motor impairments were more likely to receive rehabilitation than those with intellectual impairment (44% vs. 8%, P < 0.0001). Of the 233 assistive devices required, only 64 (28%) had been issued. Less than half (45%) of the children entitled to a social assistance grant were receiving it. Lack of money, limited awareness about available services, and bureaucratic obstacles were the main reasons offered by caregivers for the low utilization of available services and resources. CONCLUSION: Children with disabilities living in Orange Farm are not enjoying the rights and services to which they are entitled. Innovative, co-ordinated service delivery strategies, and better-informed caregivers combined with community recognition of, and support for, the needs of disabled children are required to address these unmet needs.