Home-based care and quality of life for people with physical disabilities in greater Johannesburg

Mungani, Aldrian Patson
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Introduction: Persons living with disability are among the most marginalized and vulnerable groups in many communities in South Africa. Having a disability has an impact on how an individual feels about their health status as well as the social and psychological aspects of their lives; referred to as an individual’s quality of life. Efforts to improve quality of life for people with disabilities have included provision of home based care services which entail day to day care (medical, psychological and material) that a person receives in his or her own community. The overall objective of this study was to determine the relationship between exposure to Home Based Care services and Quality of Life for people with physical disabilities in greater Johannesburg with a view to offer recommendations that seek to improve the service and ensure improved quality of life for people with disabilities. The quality of life domains examined are physical functional status, emotional well-being, social relationships, social support and ability to practically engage with the environment. In addition, the study also described the type and frequency of home based care services available for people with disabilities. Materials and methods: This study was a descriptive and analytical cross-sectional study of 96 people with physical disabilities 18 years and older. A questionnaire, adapted from the WHO QOL BREF tool was interviewer-administered among participants drawn from clients of the Association of People with Physical Disabilities (APD). Bivariate and multi variate analysis was conducted to detect associations between the demographic characteristics, HBC characteristics and quality of life (both QOL rating and the different domains of QOL). Results: The majority of the sample (60%) was female and the mean age was 55 with a standard deviation (SD) of 17.8. Three-quarters of the sample (75%) was over the age of 40; with the mean age for males and females at 48 (SD-15.6) and 59 (SD-17.9) years respectively. More than half of the sample (65%) was exposed to HBC services, primarily provided by APD. The most common HBC components among the clients were basic care (52%) as well as basic body exercises (54%). On self-reported QOL, 44.8% considered their QOL to be good. A quarter (25%) would neither describe it as good or bad, stating that life has good and bad moments. About 26% thought their QOL was very poor, with 11.5% considering it to be very poor. Five dimensions of QOL were examined; physical and functional status; emotional/psychological well-being; social support, social relationships and practical environment; and associations tested for each of these with demographic factors sex, age, marital status, and education. Only marital status was positively associated with emotional well-being (p=0.04) while none of the demographic factors were associated with social relationships and practical environment. Married people and people living with partners tended to report better states of emotional well-being as opposed to those who were single, widowed or divorced. Social support was significantly related to HBC (p=0.01) and HBC was also positively associated with physical and functional status (p=<0.01) with the majority of people receiving HBC being in the low (88.9%) and medium (82.5%) physical functionality categories respectively. Conclusion: The strongest relationship was between HBC and the social support dimension of QOL. The comparison group were people with physical disabilities who received social work services. HBC was shown to increase social support pointing to the fact that the HBC caregivers are seen as a social support structure in the absence of such or contribute to building stronger social support systems for persons with disabilities and their families, which has a positive influence on their quality of life. Study revealed a strong relationship between physical functional status and HBC for persons with physical disabilities, with clients of low functioning status requiring and needing more services. This reveals the importance of augmenting rehabilitation services through specialised therapy support and increasing capacity of HBC caregivers in providing the requisite support. As a result of limited resources and capacity of the HBC caregivers, the HBC program reviewed offer rudimentary services to some who may require more specialised therapy and psychosocial support service. For people with physical motor disabilities, access to multi-disciplinary services including, but not limited to rehabilitation therapy (physio and occupational therapy), psychosocial support and accessibility/mobility improvement support, as proposed in the CBR guidelines, is crucial to enhancing the quality of their lives.
A research report submitted to the School of Public Health, University of the Witwatersrand in partial fulfilment of the requirements for the degree of Master of Public Health. 11 May 2016