2001 SAF: Approaches to Caring for Children Orphaned by AIDS and Other Vulnerable Children: Essential Elements of Quality Service
Author: Loening-Voysey, H.; Wilson, T.; Institute for Urban Primary Health Care
A rapid appraisal of children living with HIV/AIDS in South Africa was completed in early 2000 (Smart, 2000). This present study takes the research process into the next phase, which was to identify the policy options, assess them and look at their feasibility. Based on the findings, recommendations are made for policy development for OVC.
Purpose / Objective
The main goal of this study was to develop policy recommendations for the care of orphaned and vulnerable children in South Africa. The objectives towards this goal were:
- To develop essential elements for assessing the quality of care of HIV/AIDS orphaned and vulnerable children
- To provide a typology of approaches to the care and support of children and determine the options within these different approaches
- To evaluate the extent to which the different approaches meet the needs of children living with AIDS and enable children to attain their rights
- To present information on the feasibility and cost-effectiveness of the different approaches to enable children living with AIDS to realise their rights;
- Make recommendations for policy choices
- To offer information for lobbying and advocacy around enabling children living with AIDS to attain their rights
This report is one part of a combined study. This part provides a detailed study of the quality of care provided by each approach. The cost-effectiveness part of the study has been prepared by the Health Economics and HIV/AIDS Research Division, University of Natal (HEARD, 2000).
A review of relevant and referenced literature was used to outline the findings, proposals and debates regarding the care of HIV/AIDS OVC. Essential elements to caring for the OVC were established from the discussions held with childcare workers and the reference team. These were then used in reflecting on the approaches and assessing the extent to which their services meet the children's needs and uphold their rights. Sites were selected on the basis of their availability and willingness to participate in the study as well as criteria to reflect a diversity of provinces, structures, service level and infection rate. Data were gathered at sites in the form of case studies and then matrixes were used to organise and analyse comparative material.
Key Findings and Conclusions
From the analysis of each approach against the essential element guidelines, it was clear that the efficacy of each approach depended on the extent to which it was able to either address or compensate for the following critical capacity constraints at household and community levels.
- Pervasive poverty stemming from, and compounded by, lack of access to resources including food sources and a basic income, potable water, sanitation, functioning clinics and schools. Poverty weakened the capacity of households and communities to provide adequate levels of care for OVC. In some instances, lack of access to resources resulted in extended family and kinship networks unwilling to take responsibility for the care of OVC.
- Unjust administrative practices on the part of some social security officials who used a range of methods to deny the Child Support Grant to caregivers of children under the age of seven.
- Denial of the right to education by some school administrators who refused entry to those children who were either unable to afford school fees or a school uniform.
- Inability of existing state statutory services to detect, identify, respond to and monitor OVC needing and receiving substitute care.
- Limited, inaccurate and often absent information on HIV/AIDS issues in communities. In some instances, the lack of awareness and understanding led to stigma and discrimination against HIV/AIDS OVC and an unwillingness to care for these children.
A recurring theme throughout this study shows how poverty, specifically the lack of access to resources, weakens the capacity of the household to care for OVC. Currently, many households do not have access to the necessary financial or human resources to enable them to provide adequate care for their own children, let alone OVC. Because of the nature and extent of poverty in South Africa and the challenges facing the government in delivering basic services, the burden of care currently falls primarily on households. This results, in many instances, in inadequate, poor quality care for OVC. It was clear from the study that for many of these households, simply having access to basic services including: potable water; sanitation; primary health care; education; and a basic income or livelihood had the potential to significantly improve their capacity to care for OVC.
Taboo topics within communities, linked to cultural norms, traditions and rules hindered efforts to raise awareness on HIV/AIDS prevention and care issues. In addition, these taboo topics limited the extent to which the special psychosocial needs of OVC were responded to. A commonly cited example was that of acknowledging and talking to children about the death of a parent.
The following factors undermined the ability of organisations to respond to capacity constraints within households and communities:
- Community development was an under-utilised and under-acknowledged response. The focus of most organisations was on caring and supporting OVC at the household or individual level. Reasons for this focus included:
- Large caseloads and limited/insecure financial resources, which kept organisations focused on crisis management and meeting survival needs of households on a day-to-day basis;
- Philosophy of charity and benevolence that is needs-based as opposed to rights-based. Emphasis was not on empowering claim-holders to claim their rights through, for example, advocacy and lobbying campaigns that challenge and respond to the underlying structural causes of access to resources. Instead, efforts were directed towards "doing the best we can" within difficult circumstances.
- Lack of knowledge and skills in implementing community development responses. Issues raised included whom to network with, how to tap into existing development initiatives and how to access poverty alleviation funds.
- Lack of awareness and information on the rights of children, both within the Convention of the Rights of the Child and the Constitution of the Republic of South Africa, as well as integrating children's rights issues into programmes to ensure the progressive realisation of these rights.
Currently, there is a tendency for service providers to work in isolation from each other, with little networking and cross-pollination between approaches. In addition, the current regulatory framework does not make provision for emerging responses. As a result, many services, which are filling a gap in service delivery, are operating outside the legal framework and are not eligible for any state assistance. A further concern is the lack of standardised training, guidelines and standards for the provision of services for OVC that results in highly variable levels of quality within and between approaches to service provision.
Factors that supported organisations' efforts to manage capacity constraints included:
- Presence of community support structures, especially churches and women's groups, and the willingness of these community members to take responsibility for the care of OVC. These groups were used by NGOs as points of entry into communities for mobilisation around the care and support of OVC.
- Acceptance by communities and households of home-based care programmes, without which NGOs would not be able to provide care and support. This acceptance appeared to be based on two elements: the perceived "neutrality" of programmes (in other words, the programme was not seen to be assisting AIDS patients only); and the "status" of care supporters.
- Ability to build personal relationships and contacts with "sympathetic" state employees, for example, local clinic sisters or social security officials. These relationships enabled NGOs to negotiate for access to these services on behalf of their clients.
- Access to the statutory child welfare system either through an internally employed social worker or a dedicated OVC co-ordinator with strong linkages to a functioning statutory welfare system ensured that children in need of care were identified and protected.
- Ability to access state grants for the care of OVC. State grants provided some form of financial security either for the facility or for the primary caregiver and ensured that basic survival rights could be maintained.
- Ability to access specialised or therapeutic services to address the special psycho-social needs of HIV/AIDS OVC.
Many communities, including NGOs working within these communities, were not aware of the full extent of their rights to basic services in terms of the Constitution and other legislation. Information and practical skills were also required by many households to enable them to prepare nutritious food, apply basic hygiene and infection control measures, use healthy discipline practices and respond appropriately to the psycho-social concerns of OVC.
A comprehensive safety net is needed to identify and "pick-up" OVC who are in need of care, identify appropriate service providers and link children to these services, regulate and monitor the quality of care provided to these children, and track the progression of the child through the various systems of care. There is limited information on the prevalence and incidence of OVC, which impedes proper planning. A comprehensive service provider database, which spans the continuum of approaches, is also lacking. In addition, the supervision and monitoring of childcare services are largely absent and, where they exist, tend to be ineffectual.
The reference team at the start of the study identified poverty and political leadership as being the critical stumbling blocks to quality care for orphaned and vulnerable children. The clarion call of most of the respondents in this study was for the alleviation of hunger and the need for functioning state services -- only then could they begin to talk about quality services. Specific recommendations are given along the themes of: approaches to care; capacity to care; mobilising community; and providing a comprehensive safety net.
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