Some of the barriers identified by this study are consistent with factors cited in the existing adherence literature from both developed and developing nations. For example, recent reviews have cited factors such as fear of disclosure, forgetfulness, a lack of understanding of treatment benefits, stigma, nutrition, and side effects (Au et al., 2006
; Mills et al., 2006a
; Mills et al., 2006b
; Vervoort et al., 2007
). Other factors were not well represented in previous studies. Among these, a major theme was unfamiliarity with the implications of having a chronic, potentially deadly disease. Respondents described barriers related to acceptance of the necessary permanent and profound changes in lifestyle, and the necessity of taking medicines for life. Lifestyle changes identified as difficult to accept included avoiding all alcohol and smoking, eating sufficient quantities of food regularly, and never having sex without a condom. Many informants stated that people could change these behaviors temporarily, but “not for life”. Taking medicines for life requires a new cultural framework around illness, given local expectations that medicines are normally thought of as curative and therefore temporary. Research from other fields clearly indicates the disruptive and disordering effects of chronic illnesses (Bury, 1991
). Incorporating chronic illness ideology into programming may be needed to better contend with certain barriers to adherence.
Another major theme to emerge from this study is the effect of ART on interpersonal relationships, particularly between husbands and wives. Many respondents indicated that local women do not start or continue with ART as the medications are difficult to hide. Respondents described fear of divorce or mistreatment by husbands once ART/HIV status was discovered. Respondents also suggested that women lack the possibility of economic independence, and many “would rather die than loose the marriage”, and that therefore women really have no choice as to whether or not to take ART. These responses suggest competing motivating factors such as sustaining a marriage and economic livelihood. Problems with husbands were compounded by perceptions that men “did not know much about HIV/AIDS”, with respondents suggesting that health programs need to educate and otherwise reach out to men.
Beyond the husband–wife relationship, stigma in general emerged as a significant challenge to ART acceptance and adherence. This was described in many different ways including “shyness”, fear of being laughed at, fear of being embarrassed or that others will know their status, and fear of being seen as a prostitute. Some respondents spoke of stigma from husbands and family members and fear of being disgraced or chased from their home. Others spoke about how a change in lifestyle and behavior patterns will “surely give away their status to others”. It is clear that stigma around HIV status remains an issue to be addressed.
Many interviews portrayed a sense of depression and hopelessness, of lacking the will to live with this chronic disease. Some interviewees spoke about “being ready to die”, of “rather dying than take medicines for life”, or of “rather dying than losing my marriage”. Many respondents only spoke of ART in negative terms; either stigma with rejection resulting in isolation and/or death. Other ART adherence studies suggest that depression or sadness is associated with non-adherence (Malcolm, Mg, Rosen, & Stone, 2003
; Murphy, Roberts, Hoffman, Molina, & Lu, 2003
; Proctor, Tesfa, & Tompkins, 1999
; Wood, Tobias, & McCree, 2004
). Research suggests that depressive symptomatology is inversely associated with medication adherence (Catz, Kelly, Bogart, Benotsch, & McAuliffe, 2000
; Singh et al., 1996
; Tucker, Burman, Sherbourne, Kung, & Gifford, 2003
). At present it is uncertain whether depression is usually pre-existing, or the result of HIV, or both. Growing evidence suggests that adherence programs may need to include assessment and treatment of depressive symptoms, or other mental health issues, in those who are eligible for or currently on ART treatment (Kaharuza et al., 2006
; Lima et al., 2007
Barriers related to lack of accurate information about HIV and ART was a frequent theme in interviewees. Respondents commonly suggested that counseling about the effects of ARVs was inadequate, even in a highly structured and closely scrutinized program like ZEBS. The results included a tendency to discontinue ART treatment when once felt better, thinking that the HIV has been cured. KIs also talked about poor understanding of the demands of ART regimens such as how consistent one has to be, whether or not one can still have children, and whether one can ever drink or smoke. There is a need to provide this information in a way that is relevant to local concerns such as whether and how a woman can still fulfill her societal role of having a family, and how much food one needs to eat. Literature from other sites also suggests that information is often provided in terms and contexts that patients do not understand, and with no measurement of their comprehension (Andrews & Friedland, 2000
). In sub-Saharan Africa there is likely a host of reasons for this lack of accurate information, including overtaxed health workers, limited time with each patient, counseling aimed at medical issues rather than personal or social, or hierarchical issues that make it difficult for patients to ask health care workers certain questions. Regardless, these results suggest a need for review and assessment of how and what ART information is given.