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Developing and Testing a Quality of Life Index for Children with Disabilities in South Africa

There is a paucity of investigations into the multidimensional quality of life (QoL) of children with disabilities in both developed and developing countries. The reasons for a lack of these investigations include the fact that QoL and disability are both dynamic and contested constructs, which affect how QoL is measured. The prevailing situation inadvertently contributes to the perpetuation of a cycle of exclusion of children with disabilities and compromises public efforts to promote their needs and rights. Not only is it a constitutional and legislative imperative in South Africa to focus on children with disabilities, but it is also in line with global standards to promote children’s rights and the 2030 Sustainable Development Goals (SDGs) with their focus on leaving no one behind. Despite these commitments, there is no instrument currently available that is suitable for the multidimensional measurement of the QoL of children with disabilities in South Africa. Such an instrument could go a long way in determining how they fare relative to children without disabilities, including the factors that are associated with improving their wellbeing. This study fills this important knowledge gap. Informed by Sen’s Capabilities Approach (CA) and notions of Ubuntu, this study employed a quantitative research design to first, construct QoL indices for children (including those with disabilities) in South Africa. Categorical Principal Component Analysis (CATPCA) and the method of Nicoletti et al. (2000) were used to construct and weight a composite QoL index using the 2011 and 2016 South African General Household Surveys published by Statistics South Africa. Second, comparisons in the QoL of children with and without disabilities were drawn to identify the disparities between these groups of children. A third aim was to compare QoL based on heterogeneity in child disability. Finally, the parental and social/environmental factors associated with improved QoL of children with disabilities were explored.  The analysis in this study was conducted at two points in time to ascertain the robustness of the new index as well as to detect any changes in child QoL. Key QoL dimensions that consistently formed part of the constructed index included both household characteristics and individual level characteristics of the child. These dimensions included access to basic services, access to food, income, assets, education, and care resources available to children. The findings of the research demonstrated that in 2011, children with disabilities experienced a QoL that was significantly lower than that of children without disabilities. This difference, however, was not evident in the 2016 cohort of children, suggesting that the gap in disparities between children with and without disabilities was closing. However, when race and age intersected with disabilities, younger children and Black African children experienced lower QoL levels. Furthermore, children with moderate disabilities attained an average QoL score of approximately 81, which was significantly higher than the average QoL score of approximately 79 attained by children with severe disabilities. Children with difficulties in walking experienced the lowest QoL across 2011 and 2016. Yet, irrespective of the types or severities of disabilities experienced, three sets of resources emerged as most important in improving child wellbeing, namely basic services, income and food access. Basic services were identified as the dimension that required the most immediate attention for all groups of children with disabilities except for those with difficulties in walking and remembering where income took precedence. Parent and social/environmental factors such as higher parental education levels, the employment of a father, urban residency, formal housing, access to private healthcare and a shorter travel distance to healthcare facilities were all associated with higher QoL scores for children with disabilities. This research revealed the fundamental importance of a multi-sectoral response to enhancing the QoL of children in South Africa, including those with disabilities. First, the expansion of basic services for all children, including those with disabilities was of paramount importance. This factor is particularly important given the negative health and education consequences linked to poor water and sanitation access for children with disabilities (Child, 2016; DSD, DWCPD & UNICEF, 2012). A second area that emerged was the provision of income support for households in which children with disabilities resided. The elevated costs of caring for children with disabilities and the inability of some caregivers to seek employment place these households in a precarious situation. A protective strategy in this regard would be to increase the uptake of the Care Dependency Grant, which is a type of social assistance provided for poor children with disabilities by the South African Government. Third, was the need to ensure that access to food for children with disabilities be prioritised. In this regard, Wills et al. (2020) propose that corporate social investment and private philanthropy complement government provision of food and income protection programmes. Focusing on these specific areas for children with disabilities is crucial if their QoL is to be improved, specifically considering the COVID-19 pandemic, which has had a detrimental effect on household income and food security in South Africa. Furthermore, the continual monitoring of multidimensional QoL to promote the needs and rights of children with disabilities is central to ensuring that South Africa meets its SDG commitment that “no one will be left behind”.

Keywords: Quality of Life; Children with Disabilities; South Africa; Composite Indices; Multidimensional Wellbeing; Monitoring Child Disability; Basic Services; Disability and Social Assistance; Food Security

Full Name
Dr Jacqueline Moodley