Pathways to Action: HIV/AIDS Prevention, Children and Young People in South Africa

Introduction:

"There appears to be a pervasive belief in South African society, that young people have not responded to HIV/AIDS. This report is an attempt to take stock of what has happened in respect of the response to HIV/AIDS by children and young people in South Africa, as well as the societal response to the needs of young people.

There is no national behavioural surveillance system in South Africa and there have been no comprehensive attempts at drawing conclusions from the many KABP (knowledge, attitudes, beliefs and practices) studies that have been conducted in many different contexts throughout South Africa since the late 1980s. The consequence is that it has been virtually impossible to make informed judgements about behavioural and social responses to HIV/AIDS.

We have a less than satisfactory understanding of the extent of HIV prevalence amongst young people and equally, we have insufficient closely evidenced understanding of the response of young people to HIV/AIDS. Furthermore, although there is ample evidence of numerous attempts to promote HIV prevention and mitigation of the impact of HIV/AIDS, the scope, models and impact of such interventions have not been adequately documented or understood. In this context we are not in a position to talk definitively about the cumulative effect of intervention programmes. Nor are we able to evaluate impacts of specific programmes. Whilst in this report we do discuss some of the difficulties associated with evaluating specific programmes, our emphasis is more on understanding the conceptual underpinnings of programmes. We have looked at approaches to intervention and attempted to understand predominant trends of intervention programmes and contemporary programme development needs.

Throughout this review, the position is adopted that prevention and care are related. An adequate support and care framework depends on establishment ofa sound prevention framework. It should be understood that there is a continuum of activities that move from prevention through to care and support.For example promotion of prevention may lead to greater understanding of how infection occurs and lessens anxiety about infection in the presence of HIV positive people, thus lessening the chance of hurtful avoidance and social stigmatisation. Conversely, perceptions that there is an adequate care system in place may increase the likelihood of people taking the step of finding out their HIV status, which in turn promotes prevention. It also leads to perceptions that HIV infection can be managed effectively over a long period of time.

It is time to modernise our conceptual frameworks with regard to the wide range of behaviours and practices that are appropriate in responding to the epidemic. We need to understand that what is appropriate and useful as a response to HIV/AIDS extends beyond the realm of sexual behaviour, and we should not assume that sexual behaviour is the single lens through which we must understand and measure forward progress. There are many complex and significant behaviours and practices in the prevention-care continuum, and efforts need to be oriented towards identifying, measuring, and indeed,celebrating these. These range from, for example, wearing a red ribbon, to using a condom, to undergoing voluntary counselling and testing, to being supportive of people living with HIV/AIDS. Each of these activities contributes, directly or indirectly, to both prevention and care. Wearing a red ribbon expresses proactive personal and social concern which operates within the prevention-care continuum. Condom use signifies internalisation of risk. Voluntary counselling and testing contributes to earlier detection of HIV which is promotive of care and also of prevention. Less directly, but significant nonetheless, being supportive of a person living with HIV/AIDS may contribute to disclosure of HIV status and a more positive social environment for people wanting to know their status. This is obviously good for prevention.

Another important general stance taken in this review is that behaviour change should not be simplistically thought of in terms of measures of individual dispositions and responses, although this has largely been the emphasis of much prevention research. In this review we have carefully avoided reducing the concept of behaviour to ‘something that people do', and have attempted to draw attention to the multiple factors which need to be taken into account in understanding the responses of young people to HIV/AIDS. Many of these factors operate in the background of awareness and through social influences and conventions which people adopt without ever thinking about them. This means the concept of prevention is understood as needing to target not only individuals and their immediate social environments, but also contextual factors that the environmental affords by way of support for behaviour change.

It is also important to understand the limitations of the concept of ‘change' embedded in the notion of ‘behaviour change'. The concept implies are quirement of a shift from practicing the ‘wrong' behaviour (unsafe sex), to practicing the ‘right' behaviour (safer sex). This was an appropriate conceptual framework in the early stages of the epidemic, where safer sexual practices were uncommon, and there was a need to re-orient existing practices. However, in an advanced epidemic the situation is quite different. Many individuals enter their sexual lives practicing safer sex, or adopting strategies that are appropriate to HIV prevention. Such individuals do not need to be persuaded to change these practices, nor is it appropriate to measure their behaviours and practices in terms of the concept of ‘change'. In this instance, models of endorsement of new social norms around safer sex, or support for maintenance of behaviour changes also need to be emphasised.

To return to the review, the specific aims and objectives are to:

• comprehensively review the current state of knowledge about the response of children and young people in South Africa to HIV/AIDS, and to develop an understanding of what we know in this area.
• develop an understanding of the gaps in what we know and how our knowledge base needs to be improved.
• develop an overview of the programmes which have been developed for assisting children and young people to deal with the risks of HIV infection and positive responses to the challenges of living in an advanced HIV/AIDS epidemic.
• develop a conceptual framework for understanding preventive behaviour, care, support and social mobilisation, taking into account key features of the South African context.

The review looks at the limits of our understanding of how young people have been affected by HIV/AIDS and about how they have responded to it. Following this, the programmes which have been developed to assist young people in responding to HIV/AIDS are discussed in broad terms with a view to understanding the main methodologies and emphases. Gaps and problems associated with this ‘response framework' are reviewed and suggestions are made about how the response could and should be developed.

In brief, and at the broadest level, this review has led to the conclusion that whereas there has been significant and broad-based recognition of the seriousness of the HIV/AIDS epidemic, and whereas there is a rapidly developing appreciation of the need to respond to HIV/AIDS, there is now a pressing need to endorse and focus on social mobilisation at all levels. Although responses to date have been, in many respects, less than adequate, there is a global awareness of HIV/AIDS and an understanding of the need to respond. This report suggests that there has been an underestimation of the achievements to date.

It might have been expected that the mobilisation of awareness as well as parallel support services would have significantly limited impact, but it is of no surprise that the support programmes that have been developed have not been sufficiently prioritised, nor have they penetrated deeply into community life.In the light of this, it is clear that there is a need to develop a second wave of response which needs to work at the level of civil society, and in local and district contexts.

There is increasing evidence that widespread concern is leading to a growing wave of attempts at local level to find ways of responding to the threat of HIV/AIDS. Even in some of the remotest areas of the country one can find community leaders, cultural groups, or service clubs which have tried in different ways to do something about HIV/AIDS. But these nascent attempts are mostly unsupported, are seldom directly funded, and are often not strategically developed or sustained, and they are also sometimes at odds with the needs of the broader society. It is important therefore, that campaigns are coordinated to take into account the development of the society's capacities to respond to the epidemic. It is important not to offer solutions which the society is unable to deliver, without simultaneously advocating and creating a context for such delivery. Further, communication activities do not go very far in addressing the many underlying structural, organisational, capacity and developmental problems which need to be addressed in creating effective local level responses to the epidemic. In general, it appears that there has been an over-reliance on high budget communication activities at the expense of systematically developing a second tier response.

The conclusions of this report suggest that the response to HIV/AIDS has progressed through an important first stage, and that further progress faces a formidable development challenge which entails finding ways of supporting communities in developing their responses to HIV/AIDS. Amongst the challenges to be faced in this second wave are the challenges of developing and expanding services aimed at supporting prevention, care and support efforts. The main orientation in this review is to focus on the challenges that need to be faced,and on the need to develop models for mobilisation that allow for sustained HIV/AIDS response.

It should be pointed out that this review is situated in a broader programme being conducted on behalf of Save the Children. Simultaneous to the development of this review and partly informing it, another process has been underway. This has been an exploratory, action-research process involving the further development of the ideas presented in this report through implementation in two different settings. The first of these is a social mobilisation project aimed at developing a framework for response to HIV/AIDS in a group of remote rural villages in the Eastern Cape, with a special emphasis on issues relating to young people. The second involves mobilisation of response amongst visually impaired young people in an institutionalised peri-urban setting. Each of these projects has faced different challenges which have allowed us to test and further develop some of the ideas presented in this report. The outcomes of these two projects are presented in a separate report: 'Making HIV/AIDS our problem: The development challenge'."