Department of Health, Behavior & Society, Bloomberg School of Public Health, Johns Hopkins University (Underwood, Hendrickson), Center for Communication Programs, Department of Health, Behavior & Society, Bloomberg School of Public Health, Johns Hopkins University (Van Lith, Mallalieu), Department of Public Health & Policy, London School of Hygiene and Tropical Medicine, Lusaka, Zambia (Lengwe Kunda)
"Addressing community-level factors (CLFs) is integral to the ongoing effort to design multilevel, effective, and sustainable interventions to address each element of the HIV/AIDS treatment cascade." This review examined 100 evaluations of communication interventions designed to create a more positive environment for HIV testing and access to treatment and care, and it analysed how more existing data studies might be collected and aggregated to further the study of CLFs. The article is from the JAIDS: Journal of Acquired Immune Deficiency Syndromes supplement addressing clinicians and public health scientists in the field of HIV prevention and treatment who might value information on health communication. (Footnotes removed by the editor.)
"This critical review of the literature sought to answer the following research questions:
- What CLFs promote/inhibit HIV testing, encourage/discourage uptake of appropriate treatment, or support/undermine adherence and care in low- and middle-income countries?
- What CLFs have HIV-related interventions addressed? How and with what effect?"
Negative or positive effects of CLFs associated with individual elements of the treatment cascade - testing, pre-antiretroviral (ART), ART adherence, and care - are discussed:
- HIV counselling and testing (HCT) - "An analysis of community factors in 8 African countries found that living in communities with relatively high community levels of HIV knowledge, male employment, and primary school completion by both men and women were all positively associated with men's uptake of HIV counseling and testing (HCT). In communities where more women were employed, and there were a higher number of sexual partners in the community, men were less likely to be tested for HIV."
- Social Support and Social Networks - Membership "in community organizations (eg, women's groups, people living with HIV [PLHIV] groups, burial societies, sports clubs, political groups) is positively associated with uptake of HCT. Organizational membership increases social capital and support and can give members a feeling of belonging. In Malawi, male and female members of community groups (16.2% and 10.5%, respectively) were twice (P < 0.05) as likely as nonmembers (8.5% and 4.6%, respectively) to have had an HIV test. In Zimbabwe, rates of uptake by both men and women were higher among community organization members (15% and 35.6%, respectively) than among nonmembers (9.2% and 29.6%, respectively). Group membership aggregated at the village level was also positively associated with higher HCT rates over 3 years....The Health Communication Partnership Zambia sought to strengthen community-based systems as part of a larger effort to encourage positive health behaviors. The project evaluation found that the intervention was able to build community capacity, which was associated with community action to improve health behaviors. Respondents from communities with high levels, rather than low levels, of community action were twice as likely to have undergone HCT and know the results (odds ratio = 2.00, P < 0.001)."
- Cultural and Gender norms - Studies found that men were less likely to test because: 1) South African men feared becoming a burden and failing in the role of provider and 2) Zambian men felt their position in intimate relationships would be undermined if they agreed to HCT at the urging of a wife or other partner. Women had difficulty testing if gender norms required a husband’s permission or if they had no financial resources.
- Stigma - " A study in Nigeria found that men from communities that reported a medium level of stigma (on a tripartite scale of low, medium, and high stigma) were 43% less likely to report readiness for HCT than men living in communities with low levels of stigma (odds ratio = 0.57, P < 0.001)."
- Pre-ART - Loss of clients in this period has brought a focus to clinical improvements, such as point-of-care CD4 count testing or improved referral systems.
- Social Support and Social Networks - These are critical in this period for physical, spiritual, and financial help and can include community-based organisations (CBOs) and networks of PLHIV. However, social support may hinder care-seeking behavior and ART uptake "among sex workers and men who have sex with men (MSM). Fear of losing fellow sex workers' social support and client referrals hindered care-seeking behavior in India."
- Cultural and Gender norms - "In Burkina Faso, gendered values attached to femininity motivate women to seek care, whereas gender norms inhibit men from seeking care early, which also places their partners at risk of HIV infection. Likewise, in Thailand, more women initiate treatment than men, although men are more likely to be infected with HIV."
- Stigma - Key populations, including sex workers, MSM, and people who inject drugs, often face barriers to treatment, including attitudes of health workers (which can be addressed through training).
- ART Adherence - "Several studies have found that community-level HIV/AIDS knowledge, which can decrease misconceptions and enhance support for PLHIV, is positively associated with adherence."
- Social Support and Social Networks - "A study in Zimbabwe found that social networks can enhance adherence among children through increased support for PLHIV, mitigation of stigma, improved access to health services, and disclosure.... systematic review found that patients with community support had better virological and immunological outcomes as well as increased levels of retention and rates of survival."
- Cultural and Gender Norms - "In Zimbabwe, a study found that many men struggle to adhere because they avoid clinics identified as 'AIDS clinics' by their community." Women struggle with male approval, support, and control issues.
- Stigma - Actual discrimination and fear of discrimination can reduce adherence. "A qualitative study of children on ART and their caregivers highlighted stigma at school as an impediment to adherence. Similarly, a study in western Kenya found that 16% of children living with HIV were lost to follow-up because of discrimination by the family or community, and 30% were lost to follow-up because of caregivers' fears of stigmatizing by family or community." However, fear of stigma can increase adherence in that ART may delay significantly the appearance of illness.
- HIV/AIDS Care - Care "includes engagement in, and outcomes of, treatment and services for PLHIV, with the ultimate goal of viral suppression."
- Social Support and Social Networks - "In Malawi, individuals living in areas with community support had decreased risk of death, decreased loss to follow-up, and increased adherence to ART compared with those in areas lacking community support. A qualitative study in Uganda found that community support, community groups, and networks were vital to palliative care delivery, treatment support, and bereavement support. Leadership, capacity building, partnerships with community members, and supportive policies facilitated community participation in the provision of palliative care." Similar studies in Ethiopia and Nigeria found reduced infections and mortality and better odds of available care and treatment.
- Stigma - "A study in Serbia exploring PLHIV perspectives found that the limited availability of state-funded HIV treatment has interacted with structural forces to create new forms of stigmatization that limit empowerment and employment opportunities." Similarly, PLHIV released from Malaysian prisons found difficulty in obtaining care. Key populations in Southern India, Grenada, Trinidad and Tobago, and Nigeria found, variously, community, family, and provider discrimination as barriers to care.
In analysing available studies, researchers found: a need to work with social networks, community leaders, and clinic staff to evaluate CLFs; a failure of assessment of the potential of community-level change; and a need to evaluate interventions designed to have community-level effects. They recommend accessing existing data regarding social norms, gender norms, and other such factors to aggregate it "at the cluster, neighborhood, or community levels" and incorporate it into multilevel analysis.
JAIDS: Journal of Acquired Immune Deficiency Syndromes, August 15 2014 - Volume 66 - p. S237-S240, accessed July 22 2014. Image credit: HC3 website