While data from HAART programs provide insight on individuals who access care and who continue in follow-up, little is known about individuals who decline to access HIV care. Many women are diagnosed with HIV during pregnancy as part of PMTCT programs, and timely referral to a HIV care program with early initiation of HAART can delay progression to AIDS and improve survival (Egger et al., 2002
; Hogg et al., 2001
; Kitahata et al., 2009
During pregnancy and postpartum, the approach to HIV-infected women prioritizes prevention of infant HIV infection. However, the fourth component in the UN Strategy to prevent HIV infections in infants is providing care for HIV-infected mothers as well as their infants (World Health Organization, 2003
). There may also be infant survival gains when HIV-infected mothers are managed with cotrimoxazole prophylaxis or HAART. In Uganda, there was an 81% observed reduction in mortality among uninfected children if their HIV-infected parents were receiving HAART and cotrimoxazole preventive therapy (Mermin et al., 2008
), and a threefold increase in mortality among HIV-negative children associated with death of a HIV-infected parent (Mermin et al., 2005
The access rate demonstrated in this study (74%), though higher than the 2005 Kenya national report, underscores the substantial proportion of women who elected not to transition to HIV care following maternal care. Similar trends have been reported in other African countries where, regardless of high levels of counseling, there is still unacceptable loss in access of important interventions (Manzi et al., 2005
; World Health Organization, 2008
). Furthermore, although 74% of those in our study presented at their referral site, a third of those women ceased attending clinic, leaving less than half of all referred women in an HIV care program. This is especially concerning since one would expect high levels of follow-up from presumably motivated women who had participated in a research study for one to two years.
An important factor in the transition from PMTCT to long-term HIV care referral is that women diagnosed with HIV in pregnancy are generally healthy and asymptomatic, while women otherwise entering HIV treatment do so as a result of symptoms. The majority of women transitioning from PMTCT to HIV care will not be HAART eligible and may not see other benefits of follow-up and prophylaxis to be as compelling as receiving HAART. In fact, the most commonly cited reason for dropping out of care after presenting to referral facility was ineligibility for HAART. Asymptomatic or HAART-ineligible HIV-infected individuals are at a unique window of opportunity to optimize their health and survival. However, they may not yet realize the benefits of this approach.
Personal factors such as HIV partner influence, knowledge, and stigma were frequently mentioned in this group of women. Nearly, 30% of women reported partner-related factors such as violence, negative attitude to HIV care, or lack of disclosure as major barriers to access of HIV care. This is consistent with previous findings in the region; men may exert considerable influence on how their female partners access health care and, in some cases, may become violent upon learning of their partner’s HIV status (Ezechi et al., 2009
). Previous studies in Kenya have also noted that male partners influenced feeding choices of infants and compliance with PMTCT antiretrovirals (Kiarie, Kreiss, Richardson, & John-Stewart, 2003
; Kiarie, Richardson, Mbori-Ngacha, Nduati, & John-Stewart, 2004
Women who accessed HIV care were significantly more knowledgeable regarding HAART and HIV care than those who did not. It is not surprising that accurate knowledge regarding HIV treatment would influence individuals to make appropriate decisions on their own care. Alternately, women in HIV care who are exposed to educational messages during their clinic visits may be more knowledgeable than women who do not present for care. It is impossible to determine whether knowledge leads to improved uptake or if uptake leads to better knowledge.
In the free listing by women, stigma was overwhelmingly mentioned as a barrier to access (78%). Similarly, other reports note that stigma is one of the major barriers to provision of care to people living with HIV in Africa (Greeff & Phetlhu, 2007
). Accessing maternal care at Maternal Child Health clinics does not openly identify women as HIV infected in the same way that accessing HIV care at well-known HIV care programs would. Thus, the drop off in participation between maternal programs to HIV care likely involves a combination of specific interest in prevention of infant infection, perceptions that asymptomatic HIV does not require care, and concern regarding stigma that may result from accessing programs solely defined as HIV care programs. Healthy women without symptoms or evidence of HIV may perceive much greater social cost from HIV care programs than maternal care programs.
Most of the clients interviewed were poor and cited difficulties with lack of money and transport to the health facilities. This is mirrored by the desire of the clients interviewed for availability of food, drugs, and even money to facilitate successful access to health care, while lack of the same were listed as barriers to accessing health care. Low socioeconomic status, poverty, and unemployment have been cited as major reasons for delay in accessing care by HIV-infected patients in previous studies (Joy et al., 2008
; Kiwanuka et al., 2008
; Louis, Ivers, Smith Fawzi, Freedberg, & Castro, 2007
Finally, other factors related to quality of HIV care and establishment of trust with service providers were listed as promoters of access to care and included: love, care, and assurance of confidentiality. Among women not accessing HIV care after referral, dislike of the facility was frequently listed, and lack of funds was listed as the main reason for not appearing to care. As we report here, a third of the clients who reported for HIV care subsequently either dropped out of care or changed clinics, highlighting the need for quality and compassionate care.
The main strength of this study is the fact that we addressed HIV programs from the perspective of referred clients who either did or did not access or continue care. We involved women exiting maternal programs, which reflect an important population that has relatively recent diagnosis of HIV and may perceive maternal child health follow-up differently from HIV care.
Limitations of the study include the cross-sectional nature of the evaluation at one time. Despite tracing efforts, it was not possible to contact a large percentage of women from the parent study, which may have contributed to selection bias. Nearly half of the original study population was not located. Other limitations include use of reported information from the clients. It was not possible to assess the practices at the health facilities, available community services, peer groups, or partner education that may influence access to HIV care. This study was also conducted on women who had been exposed to routine care and health education in a prospective PMTCT research study who may not be representative of PMTCT clients who have less time in follow-up (up to nine months), and less intensive involvement with providers. Finally, given the rapid increased ART access during and since this study, community perceptions are a moving target, which are difficult to capture with time-limited surveys. However, despite these limits it is likely that common themes will be retained and can be incorporated into improving programs.
It is important to make an efficient transition between maternal care to general HIV care in order to maximize health benefits to both women and children. Highlighting potential benefits of accessing HIV care pre-HAART may be one way to increase uptake among women transitioning between PMTCT and HIV care. It is plausible too, that providing standardized education on HIV care (including HAART, as well as pre-HAART interventions), the importance of HIV care, and the process of referral and accessing HIV care at the time women exit maternal PMTCT programs would increase successful referral. This requires standardization of an evidence-based referral process across the health system and early intervention in the PMTCT process. Peer counselors from the HIV care programs to which women are referred may also provide a link between PMTCT and HIV care programs, and they may be able to work with mothers at the time of referral to negotiate potential barriers that may block successful referral. These interventions should be evaluated in future research and care programs.
In conclusion, we noted that a substantial number of women elected not to access HIV care following referral after exiting maternal care, citing a variety of reasons. Partner involvement and knowledge about HIV treatment were strong determinants of accessing HIV care and receiving HAART was an important predictor of continuing in HIV care. Addressing these determinants and potential barriers may be useful in increasing effective referral between PMTCT and HIV care and treatment programs.