Theorising beyond the individual: Adherence to antiretroviral therapy in resource-constrained societies

ART adherence beyond the individual

Recent evidence suggests that a combination of psychological, personal, community and structural factors influence adherence behaviour (Coetzee et al., 2011; Kagee and Delport, 2010; Kagee et al., 2011). While individual psychological factors may be necessary to understand adherence behaviour at an individual level, these may in turn be governed by larger structural issues that may, to various degrees, be resistant to change. Structural factors are particularly salient in shaping and informing health behaviours in low- or middle-income country settings where economic, social and political realities are often more constraining on individual behaviour than in wealthy industrially developed nations. Structural factors are broad-based realities, including legal, political and environmental factors that act as barriers or facilitators to the activities in which people engage (Shriver et al., 2000). These structures play an integral role in creating a health-enabling community within which health behaviours are likely to be implemented (Campbell et al., 2005). A health-enabling community has been defined as ‘a social and community context that enables or supports the renegotiation of social identities and the development of empowerment and critical consciousness, which are important preconditions for health-enhancing behaviour change’ (Campbell, 2003: 51). The assumption is that the more enabling the environment, the more likely it is that health behaviours, including medication adherence, will be implemented.

Indeed, resource-constrained societies create special challenges for ART users. Kagee et al. (2008) have called attention to various structural barriers to adherence, including poor transport infrastructure, food insecurity, overburdened health-care facilities, limited access to mental health services and difficulties in ensuring adequate counselling. To a large extent, such barriers to adherence are not present to the same degree in industrialised countries, and as a result, health psychology theory commonly makes the assumption that such barriers do not exist. If community health psychology is to make its best contribution in a wide range of contexts, including resource-constrained contexts, these factors must be considered. By way of background to the particular context in which we base our argument, Box 1 presents a brief outline of the history of the struggle for ART availability in South Africa.

Therapeutic citizenships and the local expressions of global interactions

The scandal of AIDS denialism in South Africa did not lead only to local activism. Several alliances between northern- and southern-based organisations were created partly in response to shocking statistics about the numbers of South Africans who were infected with HIV but were not on treatment. South Africa became a site characterised by the presence of a range of different actors, including HIV positive patients, health-care providers, researchers, non-governmental organisations and activists. These actors also exist in the context of multiple local and global flows of funds, technologies, drugs and discourses that have been communally recognised as part of ‘the AIDS industry’. It is within the context of the multiple, haphazard, local and global responses to the HIV pandemic, that partially constitute this AIDS industry, that Nguyen reflects on the production of ‘therapeutic citizenships’.

In Nguyen’s Burkina Faso-based writings, the ‘therapeutic citizens’ are patients receiving ART who are measured and judged on the basis of their adherence, compliance and responsibility in relation to their treatment. In similarly resource-constrained settings, South African therapeutic citizens are produced by the same ‘complex biopolitical assemblage’ that exists as the AIDS industry in Burkina Faso.

To Nguyen, part of the process associated with the production of particular therapeutic citizenships happens in relation to the increasing scope and intervention of humanitarian organisations in particular contexts, which, he argues, ‘constructs a logic of intervention that displaces local politics and contributes to the fashioning of new identities, a process that has been described as “mobile sovereignty”’ (Nguyen, 2004: 125). At the core of Nguyen’s (2004) argument is the recognition that in countries such as Burkina Faso, local health systems are relatively weak, and health care in many contexts is dominated by international aid agencies and global bodies such as the World Health Organization. South Africa is similarly affected by international resource flows through such agencies, but is also far stronger as an independent state powerful enough to exert much more control over its own health system. Therefore, in South Africa, therapeutic citizens are produced and exist by factors beyond the borders of the country (as in Burkina Faso), but they are also firmly rooted in notions of a national citizenship in relation to the South African governmental position on HIV, health and identity more generally. It is the case in South Africa, as elsewhere, that international networks of meaning around illness take on particular local forms and consequences. It is, for example, by no means the case that it was only in South Africa that some regarded the AIDS epidemic as a fiction perpetrated by wealthy White people to control the sexuality and reproduction of black people (similar to how AIDS was viewed as a plot against gay people in the United States) (Nattrass, 2007; Shiltz, 1987). It was only in South Africa, however, that ideas such as these were used by the then head of state as part of a broader political project aimed at pointing out the collusion between ‘White’ science and scholarship on the one hand and the propagation of the apartheid state on the other. It was only in South Africa, in other words, that the tragic and indeed lethal views that constituted AIDS denialism were presented as part of a legitimate act of claiming authentic African citizenship for South Africans as part of its nascent democratic project.

Changing political circumstances, changing therapeutic citizenships

The end to AIDS denialism within the South African government was associated with increased availability of treatment to patients in need. This can rightly be described as an important health victory for political activism around a health issue, but the impact of therapeutic citizenships and on adherence behaviours may have been paradoxical. During the period of intense anti-government activism led by the Treatment Action Campaign (TAC), it is possible that ART users may have had a political identity in opposition to the government of the day. Part of that political identity was the daily action of being highly adherent to ART. Medication-taking during this historical period was not only a health-promoting behaviour at the time but also an overtly political act. In this way, we see the very concrete connections between individual health behaviours and a broader structural and political context. It is also no mistake that some of the language used by treatment activists at that time deliberately recalled and appropriated the language of political activism which led to the fall of apartheid and to the installation of the new government. This government was now, paradoxically, allowing many South Africans to die of AIDS, not for reasons of inability to provide appropriate treatment and care, but for reasons of ideology (Robins, 2008). In this sense, people took pills for identity-related reasons as well as health-related reasons. While those on ART were operating as therapeutic citizens in the global context of the AIDS industry in Nguyen’s sense, they were also using their adherence to speak directly to national identity issues.

Now that the political victories around AIDS denialism and the provision of ART have been won in South Africa, ART adherence may have lost its highly political association and its clear group identity. The current president and health minister are very clear that AIDS denialism has been a tragic mistake for South Africa. In this context, adherence to antiretroviral (ARV) treatment may be becoming more of a personal and individual act rather than a political act. As adherence began to lose its direct connections to the political creation of national citizenship within South Africa, paradoxically, ART was simultaneously normalised and mainstreamed. It is an open question whether current levels of ART adherence have become more variable and less impressive in the present day than under a denialist regime. Added to these developments, the Department of Health decided in 2011 to start ART with persons whose CD4 count is 350 or less rather than the previous criterion of a CD4 count of 200 or less. This change has meant that more people who are asymptomatic in terms of AIDS-related illness have commenced treatment. The absence of an experience of health deterioration may make adherent behaviour less likely compared to those who faced imminent death due to opportunistic infections in earlier times.

Implications for community health psychology

The vastly improved political climate regarding HIV in South Africa in the post-denialist era and the wider availability of treatments represent an important step forward but throws up paradoxical new challenges for adherence and for those wishing to promote it. It was an effective strategy to link ARV access and adherence directly to questions of broader political mobilisation during the denialist period. However, the local rhetorical and social mobilisation devices associated with that period are no longer available as a resource to maintain and improve adherence.

In this context, other persuasive arguments (more prominent in other countries) may come to the fore in attempts to optimise adherence to ART in South Africa. In other countries, and globally, public health practitioners have drawn upon a moral argument for adherence – good citizens, it is argued, take their medication in order to be minimally burdensome to the health-care system, to people who look after sick people in the community and to society at large (Nguyen, 2004). Those who are non-adherent, in contrast, become vulnerable to opportunistic infections and thus have to be hospitalised and cared for by family members as their health deteriorates. They are also unable to be economically active, thus adding to financial strain in families. The social effect of poor adherence in this way may, potentially, adversely affect their families and communities, as well as the economy on a broader scale. To this extent, adherence may be conceptualised as prosocial behaviour aimed at furthering the common good. It is only relatively recently, in the post-denialist context, that messaging around HIV in South Africa has begun to draw more extensively on this discourse of responsibilitisation, as it has been termed. It is important for health psychology to examine the impact of such strategies and to understand them within the local political context.

More challenging still is the necessity to explore, understand and intervene in the links between individual-level behaviour and the changing local political context. At the time of writing this article, it is perhaps more clear than ever that there are major crises of leadership in South Africa as a whole. It is also increasingly clear, in the light of recent political developments, including violent responses by the state to protest actions, how thin and ephemeral the transition to democracy has been for most South Africans. The dual sense of lack of credible leadership and lack of improvement in the lives of most South Africans cannot but engender a climate of despair and helplessness in some. Without a sense of a viable future, it may be more difficult to adhere to the demands of an ARV regimen, which in the short term may offer no benefits at all and is associated with inconvenience, stigma and side effects. Interventions to foster the kinds of AIDS-competent communities to which Campbell and Cornish (2010) allude must take account of this challenging context.

The South African case of a health system with historical roots in apartheid, but deeply affected by post-apartheid denialism and challenges in terms of the organisation and delivery of care (SABC, 2012), makes clear how important it is for community health psychology to take account of the complexities of local and historical contexts. In the context of South Africa, we see the production of multiply situated therapeutic citizens within communities shaped by both local political forces and global flows of funds, medications and ideas related to the complex AIDS industry. In order to appreciate what is at stake in the context of individual adherence, it is necessary to view individual health-seeking behaviour in conversation with these forces at multiple, different levels, from individual to community, to national and to international. Individual health-seeking behaviour is tied not only to these levels but also to a historical dimension, which may hitherto not have received much emphasis in community health psychology theory. Community health psychologists in other countries and contexts need to make explicit, and take account of, local political and historical factors in those contexts. If we wish to develop theories and interventions which are to have the greatest impact on health, we need to include in our analyses an understanding of the very factors which health psychology as a discipline developed in wealthier countries has been able to ignore. Focus on local issues in resource-constrained societies, furthermore, may help problematise and bring to the surface contextual issues which are of concern in wealthier countries but are obscured by being taken as natural and for granted.