We are volunteering: Communities' responses to children in need

Not only did the three sites reflect different geographic settings, but also different social, economic, cultural, and political landscapes, which means that each community response was unique to the specific context.

It was also found that no discernable community initiatives were operating at the rural site at the time of the study.

How the study was conducted

The study consulted with local communities to identify appropriate forms of support that could assist communities and ways to integrate community-based responses into government and NGO programmes.

The research approach included consultations with community stakeholders, site visits, key informant interviews, and focus-group discussions with community leaders and members, and volunteers such as home-based caregivers and community health workers.

Spontaneous initiatives

In the peri-urban and urban area, initiatives started by community members without the support from and/or influence of external agencies, were characterised by a spirit of voluntary services.

‘Yes, ... we are volunteering ... so that we can meet the needs of children affected by HIV and AIDS. The work we are doing, we call it volunteering. Yes, we are volunteers - we are volunteering in our community.' - Manager of a community initiative, urban site

Responses found in the two communities included direct food and nutrition support in the form of food parcels and food gardens, ensuring children stayed in school by facilitating fee exemptions, assisting with homework and organising study groups, providing psychosocial support at household level through memory boxes, child fostering, home visits and treatment support.

Responding as a coping mechanism

Findings show that while community responses offered various and much needed direct and indirect services at the two sites, they were also about the two communities trying to cope with and making sense of the epidemic.

It is noteworthy that some responses did not necessarily offer a tangible resource or service, but were about a community organising itself to offer relief to caregivers, companionship and acceptance to those affected by HIV and AIDS, and to de-stigmatise HIV and AIDS.

 ‘I ... love this work because I also have a child who is positive.' - Volunteer 1, peri-urban site 1 

‘... I have seen how death is ravaging my community. I do not like to see my community being ravaged by death when there is something I can do with the skills that I have...' - Volunteer 2, peri-urban site

The role of traditional values of ubuntu

Community initiatives draw on the traditional values of ubuntu and reciprocity, amass locally available resources in the form of time, money and skills, and rely on unemployed women volunteers. The peri-urban site was characterised by a strong sense of community and togetherness.

It was interesting that some of the services provided to children at the urban site were provided by individuals, rather than by members of a collective. The individual nature of some of these responses may have pointed to a slow erosion of trust and of the value of ubuntu at community level, brought on by the demands of modern living and growing individualisation.  Rural communities are usually thought of in terms of their sense of cohesiveness, and reciprocity is assumed to be an established norm in such settings. It was surprising that the rural site was demonstrating weak community ties.

 While recognising that it takes time and resources to start a response, it seems the rural site was struggling to get anything off the ground. Volunteers providing services to children affected by HIV and AIDS in the area were attached to external agencies.

‘Here there are divisions between old and new residents. Old residents do not trust new residents and they always expect new residents to initiate things. There is no togetherness ... when they try to form a CBO, divisions show even before they start.' - Home-based caregiver - rural site

Community constraints and stigmatisation

The study showed that the broader social, economic and political constraints a community is facing play a role in how they respond. It seems a subtle helplessness may emerge in resource-constrained conditions, mainly resulting from widespread poverty and unemployment.

On top of this, carers were stigmatised because they were known to be living with HIV and AIDS and/or were caring for people living with HIV and AIDS.

Caregivers need care and support, for example debriefing sessions, to deal with their own condition and the challenges they face while providing care and support to others. Furthermore, community-wide interventions addressing stigma and discrimination against people with HIV/AIDS should be considered.

‘... [Having] fingers pointed at us and being called names...that we are nurses who wipe bums.' They say: ‘Here come those who have a high heel (iqhoks in Zulu, meaning HIV)... ‘And that we are not welcome in some homes.' ‘People ask how much we are getting paid for bothering ourselves about others and neglecting our own homes...' - Various focus group participants

Poor access to financial and material Resources

Community responses face a number of challenges, with poor access to financial and material resources being the biggest challenge. In supporting community responses, a number of key elements can be identified. These include improving access to financial and other material resources, engaging community leaders in the responses, linking community initiatives to formal services, and linking community initiatives together to create a platform for advocacy and skills sharing.

 It is crucial to develop a supportive and enabling environment in conjunction with government - especially if this can involve greater government support for community responses, as this can ensure sustainability of the services they provide.

  ‘At the moment, everything is dependent upon the availability of funding. We should be having a shelter where vulnerable children, particularly those finding themselves homeless, should be able to live.' Church leader, urban area

Access to resources determines whether an initiative functions or not, and how well it functions. ‘Drip-feeding' - a steady and continuous in-flow of funding - is one of the key approaches that can be used to strengthen community responses. Such a funding mechanism would enable a response to sustain, improve and possibly upscale its projects.

Volunteers are the backbone of community responses

Volunteers are the pillars on which community responses to the epidemic are built, but volunteering can be quite challenging - and even unrealistic at times - in a context of dire poverty. Approaches for volunteer acknowledgement, recognition and remuneration should be identified.

Public acknowledgement by local leadership of the ‘work' being done by volunteers, paying volunteers a monthly stipend, giving them time off, and creating skills development and networking opportunities are some of the approaches that can be considered in seeking to keep volunteers motivated.