Our data point to economic obstacles and the strength of social relationships as principal mediators of sustained adherence in sub-Saharan Africa. These obstacles are being routinely overcome through strategies aimed at prioritizing adherence. Prioritization is accomplished with help from others. The relationships that provide this assistance are a critical resource not only for supporting adherence, but for managing economic hardship more generally. In social science, the use of relationships to obtain benefits and achieve desired ends has been termed “social capital.”
In North America, adherence to ART for HIV/AIDS has been interpreted as the product of information, motivation, and behavioral skills operating at the individual level [49
]. Such an interpretation depicts the individual as the primary agent of behavior, and de-emphasizes social context.
As an analytic construct, social capital has been characterized as a property of individuals and of organizations. It has been used in the U.S. and Europe to examine the dynamics of civic engagement [50
], the accomplishment of social action [51
], and the production and reproduction of inequalities [52
]. The ingredients of social capital (trust, cooperation, reciprocity, sociability) have been well-studied, and care has been taken to distinguish social capital from other forms of capital (e.g., economic, human, symbolic) [53
]. Analysts agree on the characterization of social capital as a resource grounded in networks of social relationships. We define it as “resources accruing from a network of relationships that help individuals to solve problems and get things done.”
The concept of social capital adds considerable explanatory power to the study of HIV/AIDS in sub-Saharan Africa. It explains not only adherence success, but also the threat of stigma. Stigma is feared because it leads to social isolation, undermining relationships that are essential to survival. Avoiding HIV-related stigma can be understood as an effort to conserve social capital, a necessary resource in settings of poverty.
Relationships confer responsibility in addition to providing resources. Recipients of help must recognize what they receive and reciprocate. To ignore these responsibilities is to risk resentment on the part of helpers. Adherence allows patients to meet social responsibilities by preventing health decline and reducing the need for support. This creates a positive feedback loop in which social relationships help patients overcome economic barriers to sustained adherence. Adherence in turn fulfills responsibilities to others. Recognizing and fulfilling responsibilities to helpers through adherence strengthens social relationships and ensures more help will be available in the future.
Preservation of social capital lies at the heart of our explanation, but we recognize influences in other domains. These include: (1) social structure, e.g., patterns of inequality; (2) infrastructure, e.g. weaknesses in health systems; (3) culture, e.g., values, religious beliefs; and (4) individual experience and behavior, e.g., side effects, lack of information, psychological distress. We offer here a social relational theory to explain adherence differences between resource-rich and resource-poor settings, while acknowledging other kinds of determinants that merit further study.
Qualitative analyses contribute to quantitative research in medicine and public health by delineating useful constructs and testable hypotheses. In detailing the explanatory power of social capital, we point to its likely predictive value in examining hypotheses such as: Greater social capital will be associated with better ART access and adherence. Verification of such hypotheses will guide interventions to sustain adherence and improve treatment effectiveness.
A question that immediately arises is whether the benefits of social capital are sustainable? How long can patients realistically expect to receive resources from others who are struggling with resource scarcity themselves? Social capital, unlike many other forms of capital, increases with use [54
]. However, while it may explain how economic obstacles to adherence have been overcome to date, it leaves the fundamental problem of poverty unaddressed. Caregiver efforts to compensate for the effects of poverty are not a substitute for affordable transportation, plentiful nutritious food, clean water, adequate living situations, and accessible and effective medical care. Eliminating underlying economic obstacles will reduce the strain on relationships and thus help to sustain both social capital and adherence.
We are not the first to address the social dimensions of adherence to ART in the context of international scale-up. A call for a biosocial framing laid out general principles of a socially grounded analysis and proposed relevant analytic concepts—social capital among them [55
]. The importance of explaining adherence success in sub-Saharan Africa was stated specifically in a more recent account, which offered an anthropological history of treatment access and introduced “therapeutic citizenship” as an explanatory construct [56
]. We propose an alternative construct emphasizing interpersonal relations, and add supporting data.
There are several limitations to our findings. First, African societies are highly heterogeneous. We collected data in urban and rural settings in East and West Africa. However, the extent to which these concepts explain adherence behavior in other African contexts will be an important area of future study. Second, we have developed a social explanation but left other domains of influence unexplored. As we develop theoretical models of adherence for resource-scarce locations, these types of influences should be more comprehensively represented. Third, while ART scale-up has been highly successful, the dynamics of adherence will likely evolve as patients confront long-term treatment. Finally, we draw upon social capital as an explanatory construct, but stop short of elaborating underlying cross-cultural differences in definitions of personhood [57
Like persons living with HIV/AIDS all over the world, sub-Saharan Africans adhere to ART because they want to be healthy. But the desire for health alone does not adequately explain adherence success. A more complete explanation highlights the role of social capital in relationships as a resource for prioritizing adherence and overcoming economic obstacles to care. Adherence preserves social capital by protecting relationships required for survival in settings of poverty. This may be what patients are referring to when they tell us they have “no choice” but to adhere.