Human Sciences Research Council (HSRC) was commissioned by the Children in Distress (CINDI) Network to conduct a study of endogenous community-based responses to the needs of children affected by HIV and AIDS, and how these might be supported in KwaZulu-Natal. Specifically, the aim was to consult with local communities to identify appropriate forms of support for such responses, and to explore mechanisms for integrating community-based responses into government and non-governmental organisation (NGO) programmes.
HIV and AIDS impact on children in a number of ways. With increasing numbers of children being affected by HIV and AIDS, families and communities have coped through a variety of mechanisms to mitigate the impact of the epidemic on children. Community initiatives, usually emerging spontaneously from within communities themselves, are front-line responses providing material and psychosocial care and support to vulnerable children. Responses initiated and owned by communities themselves are referred to as endogenous community responses.
There are a number of common characteristics to endogenous community initiatives responding to children affected by HIV and AIDS. These characteristics are volunteerism, a consultative decision-making approach, community reliance on its own resources, a central role for local leadership, and the revitalisation of traditional values. Community initiatives face a number of challenges mainly relating to how they are formed and structured, and their limited access to financial and other material resources. Thus, strategies to strengthen such initiatives should be targeted appropriately.
Three research sites were purposively selected in KwaZulu Natal to reflect a peri-urban setting, an urban setting, and a rural setting. To meet the objectives of the study, a multi-method approach was used and it included the following components: stakeholder consultation with CINDI member organisations, site visits, in-depth interviews with key informants, and focus group discussions. Data was collected on the following main issues: participants’ conceptions of child vulnerability, family responsibility and responses to children in a context of HIV and AIDS, community responses to children made vulnerable by HIV and AIDS, and how community initiatives can be strengthened to better respond to the needs of vulnerable children.
Although the three study sites represent different geographic and socio-economic contexts, situations which compromise the attainment of children’s rights and their needs are common. Situations rendering children vulnerable are at an individual, household and/or community level. These circumstances include parental loss, infection with HIV, neglect and abandonment, living in very poor households, dislocation, living with an elderly caregiver, and living with or caring for an ill adult. Participants’ conceptions of child vulnerability reflect a broad understanding of the multiple levels of child vulnerability in communities affected by HIV and AIDS; however loss of a parent is viewed as a primary indicator of child vulnerability.
Family is identified as those sharing common descent, who may co-reside or across a number of households. All families are viewed as having a responsibility to love and care for children, and to provide for their basic needs such as shelter, food, clothing, education and health care. Furthermore, family remains the most important safety net to protect children from the direct and indirect shocks of HIV and AIDS. Factors cited as motivating some families to respond to vulnerable children include the following: traditional values such as ubuntu, compassion, a special value placed on children, seeing the devastating impact of the epidemic on children, access to information, and encouragement by external agencies. Child Support and Foster Care Grants were cited as a perverse incentive for child fostering, i.e. a family might foster a child in order to access a grant, which is then not used to meet the needs of a child.
Constraints to family responses to vulnerable children, in a context of HIV and AIDS, include widespread poverty and unemployment, lack of compassion, lack of or insufficient information, fear of HIV infection, stigma associated with taking in a child whose parents may have died from AIDS-related illnesses, responsibility for own children, and the difficulty of accessing birth registration documents and grants. In the face of these constraints, it is noteworthy that most families nonetheless respond to vulnerable children. Responses at community level, whether initiated by individuals or groups, offer material and non-material assistance to children and households affected by HIV and AIDS. This assistance includes food and nutrition support, educational support, psychosocial support, household visits and home-based care giving, treatment support, and child fostering. A community response may not necessarily offer a tangible resource or service, instead it can offer relief to caregivers, companionship, acceptance and solace through prayer to those affected by HIV and AIDS, as well as help to destigmatise HIV and AIDS. Other responses may enable volunteers, who are themselves living with HIV and AIDS, to cope with their own situation. Therefore, responding itself can be a coping mechanism for volunteers directly affected by HIV and AIDS.
Community initiatives, built on a spirit of volunteerism and a willingness to help others in need, are of various types and can be at different stages of development within the same community. An examination of factors facilitating or hindering responses by a community needs to look at both individual and social factors, because some individuals volunteer despite facing problems such as poverty and unemployment. Social factors hindering community responses may include substance abuse, HIV and AIDS-related stigma, erosion of traditional values such as ubuntu and compassion, lack of local leadership, pre-existing political conflicts and divisions, and a sense of helplessness.
That which builds community responses can also threaten their survival. As much as volunteerism is commendable, community responses may be destabilised when volunteers leave or when they die. When volunteers take time off due to ill-health or when they die, including from HIV and AIDS-related illnesses, the quality of services provided and volunteer morale suffer. Furthermore, volunteering can be challenging for volunteers, who may be poor themselves, as it can limit their income-earning opportunities in the short-term. However, volunteers may find themselves in a better position to access formal employment and skills development opportunities in the long-term. Volunteers, mostly women, need to be adequately acknowledged and remunerated, and this can be done in cash or kind.
Community responses face a number of challenges, the biggest of which is access to financial and material resources. Poorly resourced responses may struggle to compensate and retain volunteers and are limited in the type and scope of services they can offer. Low levels of technical training in areas such as fundraising, planning and project management, and competition for resources present other challenges to community-based responses. In supporting community-responses, however, a number of key elements need attention. These include improving their access to financial and other material resources, involving community leaders, facilitating a reciprocal relationship between initiatives and government services, and facilitating networking and skills sharing opportunities between initiatives. It is also important that government and others create a supportive and enabling legislative and policy environment.
Building AIDS-competent families and communities is one of the key strategies for cushioning children from the current and future shock of HIV and AIDS. While families and communities should be commended for their endogenous responses seeking to address the needs of children made vulnerable by HIV and AIDS, more should be done to enhance their coping capacities. While acknowledging the critical role that organisations such as CINDI continue playing in supporting families and communities respond to vulnerable children in a context of HIV and AIDS, there is an even bigger role for local leadership and government in improving the coping capacities of families and communities affected by HIV and AIDS, and supporting community-based initiatives.
©Human Sciences Research Council
