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Women's experiences in services for preventing the mother-to-child transmission of HIV: a literature review

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WHO/HIV/2013.47

Women’s experiences in services for preventing the mother-to-child transmission of HIV: a literature review

December 2012

Prepared for the World Health Organization by: Laura Ferguson Institute for Global Health Program on Global Health and Human Rights Keck School of Medicine University of Southern California Los Angeles, California USA laurafer@usc.edu 1

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Contents Executive summary ........................................................................................................... 4 Introduction ....................................................................................................................... 5 Methods .............................................................................. Error! Bookmark not defined. Results ................................................................................................................................ 6 Results of the systematic search ............................................................................................... 6 Overview of the studies in the review ...................................................................................... 7 Women’s experiences in PMTCT services .............................................................................. 8 Counselling ........................................................................................................................... 10 Consent ................................................................................................................................. 11 Confidentiality ...................................................................................................................... 11 Health worker–client interactions ......................................................................................... 11 Health facility factors ........................................................................................................... 12 Stigma ................................................................................................................................... 13 Uptake of antiretroviral prophylaxis .................................................................................... 13 Uptake of long-term HIV care and treatment services for women’s own HIV infection . 13 Experiences within health services ....................................................................................... 13 Personal and community-related .......................................................................................... 15 Uptake of follow-up services for infants................................................................................ 15 Women’s attitudes towards immediate initiation of lifelong HAART (PMTCT option B+) ................................................................................................................................................... 16

Research needs going forward ....................................................................................... 16 Conclusion ....................................................................................................................... 17 Annexes .............................................................................. Error! Bookmark not defined. Annex 1: Results of systematic searches ............................................................................... 18 Annex 2: Criteria for considering a study “fatally flawed” ................................................ 19 Annex 3: Table A1: Overview of studies in the review ........................................................ 20 Annex 4: Table A2: Non-adherence to antiretroviral prophylaxis for PMTCT ............... 24

References ........................................................................................................................ 26

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Executive summary In the context of a rapidly evolving policy environment for the prevention of mother-to-child transmission of HIV (PMTCT) and the possible shift towards immediate initiation of lifelong highly active antiretroviral therapy (HAART) for all women diagnosed with HIV in the context of pregnancy, further insight is required into women’s experiences in PMTCT services and how these may affect their uptake of HIV-related services. This literature review aimed to synthesize existing peer-reviewed literature on this topic and to highlight areas where further research is required. A range of factors within the health care setting emerged that affected women’s experiences in PMTCT services. These related primarily to inadequate counselling at the time of diagnosis, perceptions of mandatory testing, real and perceived breaches of confidentiality and suboptimal health worker–client interactions. Additional health facility factors such as long waiting times and cost of transport to the health facility were also mentioned. Barriers to attending PMTCT services outside the health facility included: denial of the HIV diagnosis, financial barriers, lack of information, competing obligations, lack of perceived need, unsupportive partners and stigma. With specific regard to the use of antiretroviral prophylaxis for PMTCT, little evidence suggested that this was linked to women’s experiences in PMTCT services. However, irregular antenatal care attendance and low levels of trust in health workers, which may stem from experiences within PMTCT, were associated with non-use of antiretroviral prophylaxis for PMTCT. Linkage to follow-up care and treatment services for women and infants was affected by barriers similar to those for PMTCT services more generally, with additional barriers including low levels of knowledge of these services and low perception of need. Overall, the evidence regarding how women’s experiences in PMTCT services affect their subsequent care-seeking behaviour remains sparse, since few studies have specifically sought to assess this link. This appears to be particularly true with regard to the uptake of both long-term HIV care and treatment for the woman’s own HIV infection and infant HIV testing and related services. Some data hint at non-acceptability of using antiretroviral medicines during pregnancy, but there is a striking paucity of information regarding women’s attitudes towards initiating lifelong HAART during pregnancy. Despite this review’s focus on health services, factors within the broader community clearly also affect women’s care-seeking behaviour and thus will require attention in any efforts to improve the uptake of HIV-related services. Further, health workers’ discriminatory attitudes and behaviour probably reflect societal attitudes, highlighting the need for action both within and outside the health care setting. Women’s experiences of and perspectives on current and proposed interventions and how these influence subsequent care-seeking behaviour need to be better understood to ensure that an appropriate and acceptable package of services can be offered and that the virtual elimination of mother-to-child HIV transmission can become an attainable goal.

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Introduction Informing the forthcoming revision of the global guidelines for the prevention of mother-to-child transmission of HIV (PMTCT) requires evidence on the current state of knowledge in this field. Recent literature reviews have sought to bring together quantitative data on client attrition along the PMTCT cascade’in low- and middle-income countries, highlighting the scale of dropout at each stage along this pathway (1,2). Interventions to reduce attrition have been suggested, including providing integrated, family-centred services, introducing point-of-care CD4 count tests, using peer supporters within health facilities and improving health information systems. But few of these recommendations are based on women’s articulations of why they do not follow recommended PMTCT interventions. In low- and middle-income countries, home to 97% of people living with HIV globally (3), little is known about how women experience HIV diagnosis in the context of pregnancy and how this might affect their subsequent uptake of HIV-related services. Understanding these experiences is critical to ensuring that appropriate services and programmes that meet women’s needs and provide adequate support for facilitating care-seeking behaviour can be offered. This literature review aimed to synthesize existing evidence in peer-reviewed literature regarding women’s experiences in PMTCT services in low- and middle-income countries. In this context, PMTCT services include HIV counselling and testing within antenatal, delivery or postnatal care services, antiretroviral prophylaxis for PMTCT, linkage to long-term HIV care and treatment for the woman and linkage to early infant diagnosis and, if necessary, infant care and treatment services. In addition to seeking general information on women’s experiences in PMTCT services, two specific areas of interest guided this work: 1. how these experiences constituted barriers/facilitators to the uptake of: a. antiretroviral prophylaxis for PMTCT b. follow-up HIV care for the mother c. follow-up HIV care for the infant; and 2. women’s attitudes towards immediately initiating lifelong highly active antiretroviral therapy (HAART). The latter question is driven by the increasing interest in the potential of the immediate initiation of lifelong HAART for all women diagnosed with HIV infection during pregnancy (known as PMTCT option B+). The primary focus of the review is women’s experiences within the health care setting, but most studies also assessed other factors that might affect women’s overall experience of PMTCT, including disclosure, financial barriers and stigma. Given the impossibility of completely disentangling these experiences, they are also covered in the review, albeit in less detail.

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Methods A systematic search was conducted of literature published in English, French, Portuguese or Spanish between 1 January 2000 and 15 November 2012. PubMed, EMBASE and Web of Science were all searched. The following terms were searched for in various combinations in publication titles and abstracts: HIV, PMTCT, pregnancy, diagnosis, experience, decision, barrier, linkage, quality and qualitative. In PubMed, MeSH headings were also used for searching. See Annex 1 for a full list of search combinations used and their results. Articles were included in the review if they were carried out in a low- or middle-income country and contained information specific to the experiences of women diagnosed with HIV in the context of pregnancy. Studies assessing the acceptability of HIV testing within the context of pregnancy as well as those focused primarily on location of delivery or infant feeding practices were excluded. Studies could be observational or descriptive of an intervention. No publications were excluded based on study design; rather they were assessed for “fatal flaws” as defined in Annex 2. The titles and abstracts of all references retrieved were reviewed, and those that seemed potentially relevant were selected for full-text review to determine the final selection of articles for inclusion in the review. Reference lists for each of the articles included in the review were manually searched for additional relevant publications.

Results Results of the systematic search The search yielded 1740 unique articles. All abstracts were reviewed, and 75 were selected for full-text review, 31 of which met the inclusion criteria. Three additional publications were found from the manually searches of these articles’ reference lists. Thirty-four publications were included in the final review (Fig. 1).

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Fig. 1. Results of the systematic search

Identification

Records identified through database searching (n = 3198)

Records after duplicates removed (n = 1740)

Screening

Records screened (title and abstract) (n = 1740)

Records excluded (n = 1665)

Eligibility

Full-text articles assessed for eligibility (n = 75)

Studies for inclusion in review (n = 31)

Included

Full-text articles excluded (n = 44) Did not include women’s perspectives (n = 23) Not set in a low- or middle-income country (n = 15) Conference abstract only: insufficient detail to include (n = 3) About non-HIV-related decisions in pregnancy

Additional records identified from reference lists (n = 3)

Total studies included in the review (n = 34)

Overview of the studies in the review Table A1 in Annex 3 provides an overview of the studies in this review. It provides an overview of each of the studies, including information on the study objectives, design, setting and population. Additional comments are provided where this might help to understand the focus of the publication, methodological approaches or any potential biases. The table is summarized below.

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26/34 (76%) of the studies in this review were carried out in a single country in sub-Saharan Africa, including seven in South Africa and six in Malawi. Three studies were carried out in a single country in Asia, and one study was carried out in Latin America. Of the four multi-country studies, one was a global consultation,1 one encompassed Indonesia and Viet Nam, one included data from four countries in sub-Saharan Africa and one was about work in five sub-Saharan African countries and India. The review includes publications using a wide range of methods, from large-scale surveys to indepth interviews. All articles include some information on women’s perspectives on PMTCT; some also include other people’s perspectives such as health workers, family members and community members. Only 4/34 (12%) studies were published before 2007, none of which contained any information on long-term HIV-related services (beyond the provision of antiretroviral prophylaxis). The first specific reference to uptake of infant testing in the studies in this review was in 2008 (4). The first study to provide an overview of factors affecting the uptake of long-term HIV care and treatment services for women as a component of PMTCT services was published in 2010 (5). The findings are presented in a way that seeks to answer the research questions highlighted in the introduction. First, there is a general section on women’s experiences in PMTCT services. This is followed by sections linking these experiences to: uptake of antiretroviral prophylaxis, uptake of long-term care and treatment services for women’s own HIV infection and uptake of infant follow-up services. The final section addresses women’s attitudes towards the immediate initiation of lifelong HAART. Following presentation of these findings, areas are highlighted in which gaps in knowledge persist and further research is required.

Women’s experiences in PMTCT services The possibility of having a healthy child born free of HIV constitutes a strong motivator for attending PMTCT services. Nevertheless, substantial barriers persist that impede women following recommended PMTCT interventions. Table 1 provides an overview of women’s experiences in PMTCT services that might constitute barriers to the use of these services, divided into health services, personal and societal factors. Each of the health service barriers is further explored below the table. There is also a short subsection on stigma, since this emerged as a pervasive concern in many settings.

The consultation included an online consultation (moderated chat forum with participants from 16 countries), an anonymous online survey (601 responses from 58 countries) and focus group discussions with people living with HIV in Jamaica. The study presents the views and experiences of people living with HIV on barriers and opportunities in relation to PMTCT, focusing on primary HIV prevention and the prevention of unintended pregnancies.

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Table 1. Women’s experiences in PMTCT services articulated as barriers to attending these services Health services barriers 1. 2. 3. 4. 5. Counselling Insufficient time; gaps in information (6–13) Lack of follow-up (10) Lack of attention to social issues (9) Feeling unable to ask questions during PMTCT due to power imbalances (14) Feeling unprepared for the implications of testing (15) Consent Perception of mandatory testing (14,16) Confidentiality Breach of confidentiality of health information (68,10,16,17) Fear of breach of confidentiality of health information (4,12,18,19) Health worker and client interactions Poor health worker attitudes (4,8,20–22) Lack of trust in health services/provider (6,8) Fear of health workers (19) Poor communication between health workers and client (23) Judgmental and unresponsive providers (6,24) Discrimination at health facilities (8,17,22,24,25) Health facility factors Long travel time to facility (6,8,17,19,20,22,26) Long waiting times (9,10,15) Having to visit multiple clinics (9) Need for frequent visits to PMTCT services (25) No written information provided (13) Delayed laboratory results (23,25) Insufficient staff to provide services (17) Difficulty of finding staff during follow-up visits (12) Individual-level barriers 1. 2. 3. 4. 5. 6. Attitudes and beliefs Denial of diagnosis (12,19,24) Struggle to deal with diagnosis when pregnant (27) Depression (18) Inadequate time to process a recent diagnosis (6) Shame (12) Alternative health beliefs (such as traditional) (28) Fear of child being diagnosed with HIV (29) Fear of taking ARVs during pregnancy (27) Financial barriers Perceived costs of PMTCT services (8–10,12,17,20) Transport and food costs (6,8,9,15,22–24,26,29) Lack of information Low knowledge of PMTCT or available services (9,23) Misconceptions about HIV and PMTCT interventions (7,9,15) Forgot clinic instructions (19) Competing obligations Work (paid or housework) and childcare (23,28) Interrupted personal routine (such as away from home) (12,28) Maternal illness (10) Perception of need Lack of symptoms (23,29) Lack of perceived benefits of PMTCT (12) Partners or spouses Fear of not being able to disclose HIV status to partner, including fear of negative reactions such as blame, rejection, divorce or violence (6,10,15–17,19,20,22,23,25,27–30) Partner not willing to undergo HIV testing (15,19) Partner refused to engage in protective behaviour (19) Unsupportive partner (10,19–21,28) Influence of family members Family pressure for home delivery (20) Societal-level barriers 1. Stigma - General fear of stigma (4,8,10,16–18,21,22,31) - Fear of being seen at PMTCT services (19) - Fear of being obligated not to breastfeed (15,19,21,25,31) 2. Gender - Dependence on husband’s income (23) - Gendered division of labour (28) - Women’s lack of decisionmaking power within the family (23) 3. Legal and policy environment - Absence of a supportive legal and policy environment (6)

7. -

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Counselling Only seven studies provided any details on the study sites’ counselling protocols (such as how many sessions should be provided and by whom) or what processes were recommended for preparing women for taking antiretroviral drugs, whether for prophylaxis or as treatment for their own HIV infection (7,12,14,19,20,27,32). The overall impression from this review is that an assumption exists in most places that the post-test counselling provided at the time of diagnosis should be sufficient for facilitating women’s uptake of antiretroviral prophylaxis and/or long-term care and treatment services. However, in Kenya, a study found that 68% of clients reported post-test counselling to have lasted less than five minutes and they could not recall its content (10). The lack of follow-up counselling was described as a programme shortcoming. In Jamaica, knowledge gaps were attributed to the limited counselling provided by health workers and to conflicting information from health workers, the internet and other media (6). One multicountry study found that quantitative measures of satisfaction with counselling among women who were tested for HIV in PMTCT services were very high: for example, 83% had the meaning of positive and negative results explained to them and 87% reported that post-test information was sufficient (16). Significantly more women who tested HIV positive reported being given time to ask questions than women who tested negative (P = 0.001). The quality of counselling was deemed lowest in an area in which clients had very low levels of education, suggesting that health workers might have limited counselling for fear that clients would not understand it. Further deficiencies in the content and quality of pre- and post-test counselling were highlighted across a range of contexts. A study in Benin reported that only half the study participants had been told how to protect their infant from HIV during pregnancy, delivery or postpartum, and less than one third knew about HIV transmission through breastfeeding (11). Women in Uganda also reported low levels of PMTCT knowledge, explaining that they had not felt sufficiently empowered to ask questions during the session (14). In Malawi, knowledge about PMTCT and available services was low, and women reported that counselling was overly biomedical with inadequate attention given to psychosocial issues, poverty, education, transport and food insecurity (9). A study in South Africa (24) also highlighted the need for psychosocial support, including comfort and support. In Viet Nam, no information was provided on HAART or the treatment of opportunistic infections (8). In addition, women felt that some of the counselling was inappropriate, such as advising them not to eat at local food stalls or have their hair washed at the salon. A study in South Africa revealed important gaps in knowledge regarding women’s own health as well as infant-feeding practices, with 31/60 (52%) women planning suboptimal feeding methods post-counselling (7). Many of the studies drew attention to the importance of counselling being a positive and useful experience for clients to promote their return to services. In one study, 8/19 (42%) women spontaneously mentioned advice or encouragement from clinic staff as a reason to continue attending (32).

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A study in Botswana found that 82% of women felt more inclined to have the HIV test following counselling, but 24% of the women who refused HIV testing reported that counselling convinced them not to test (33). Clients who had received counselling from a lay counsellor rather than a nurse or midwife had higher PMTCT-related knowledge (P < 0.05).

Consent In the MATCH study in Burkina Faso, Kenya, Malawi and Uganda, 92% of women reported being asked whether they consented to HIV testing, and 84% reported they had the right to refuse testing (16). However, the qualitative data from this study paint a more mixed picture, with many women reporting that HIV testing was mandatory (16). We were told that HIV testing and counselling is a must for pregnant women: no HTC (HIV testing and counselling), no assistance from the doctor.

In Uganda, many women also reported perceiving HIV testing as mandatory and a prerequisite for accessing antenatal care services (14). In a study in Malawi, women described feeling unprepared for HIV testing in the context of pregnancy, which could have had a detrimental impact on their ability to cope with an HIV diagnosis (15). When you arrive at PMTCT you are given some information on the importance of PMTCT and then you are suddenly tested for HIV. We are not prepared for this. [defaulter]

How these perceptions affect women’s future uptake of services is unclear.

Confidentiality While some women voiced confidence in health workers maintaining their HIV status confidential, a substantial number of women reported breaches of confidentiality, and the fear of lack of confidentiality was mentioned in many studies. Some of these fears related to health workers disclosing sensitive information to third parties, while other concerns related to the visibility of HIV-related services within health facilities (12). Even the location bothers me, because everyone who comes to the clinic knows what goes on [at the programme]. As soon as a pregnant woman is seen coming here, it’s known right away that she is seropositive. [interviewee 180, aged 24 years]

The global survey of people living with HIV found that more than half of respondents had experienced a breach of confidentiality within the health care setting (6). In Kenya, clients seemed to know other women’s test results, while in Viet Nam, women reported being given their HIV test results in front of many people, including in-laws and complete strangers (8,10). Home visits were seen as attracting unwelcome attention. In India, lack of confidentiality by health workers was cited in two studies as a reason for not using available PMTCT interventions (17,25). In the context of persistently high levels of HIV-related stigma, any action that risks unwanted disclosure of HIV status could constitute a severe barrier to future uptake of health and other HIV-related services.

Health worker–client interactions Many studies described suboptimal interactions between health workers and their clients, ranging from uncaring attitudes to outright discrimination. 11

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One study in Viet Nam recorded complaints about health workers’ unkind and discriminatory behaviour by 49/51 (96%) women (8). Female respondents of the global survey of people living with HIV described loss of trust in health workers due to discriminatory attitudes and behaviour, which led to fear to access services again (6). Women in Karnataka, India also reported avoiding the use of PMTCT interventions due to experiences and/or fears of discrimination such as refusal of treatment, abusive behaviour and moral judgement (17). Similarly, women in Maharastra, India described experiences of forced isolation in the ward during delivery and isolation of their newborns (25). One woman in South Africa thought that her HIV status was the reason underlying health workers’ refusal to provide her with services (24). Women in Malawi highlighted their feelings of vulnerability and sensitivity during pregnancy and following HIV diagnosis, drawing attention to the importance of polite and kind treatment from health workers at this time (20). Health workers in another study in Malawi were described as harsh, threatening and lacking respect for patients (22). … it can be when the mother delivered at home, she can have fear to go to the hospital [for nevirapine syrup], because most of us fear being shouted at by doctors because of delivering at home. [antenatal woman, interview]

Teen mothers in South Africa reported hiding their HIV status during delivery due to what they perceived health workers’ “gruff and uncaring” attitudes even though they knew that foregoing nevirapine put their infant at risk (4). In a study in Botswana, all groups of respondents including women living with HIV and health workers, described negative attitudes of some health workers as a barrier to accessing services (21). Another study, also in Botswana, constitutes an anomaly in this regard since no women reported being treated poorly in the health care system, and 91% said that people in the clinic seemed comfortable taking care of women living with HIV (33).

Health facility factors Inaccessibility of health services has been well documented as a barrier to uptake of health services across a wide range of contexts. Reflective of this, inaccessibility of PMTCT services was described, especially in rural areas and in Asia. In almost every study in this review, women mentioned the time and cost of frequent travel to the health facility as a barrier to accessing PMTCT services. The long waiting times within the health facility were another ubiquitously cited barrier, with some women also complaining about the need to visit multiple clinics within the same health facility and difficulties finding health workers (19). When I went for follow-up, the nurse said the clinic was busy, so she gave me another appointment date. When I went again, it was the same, and when this happened for the third time, I just gave up. [They] do not know that I have to walk 5–8 km and often depart from home around 04:00. [Taona, interview, dropped out two months postpartum]

Where services were not free, their costs were sometimes described as prohibitive (6,8–10). Free drugs, infant formula and other incentives were described as facilitators (21,34). However, where infant formula tins were distinct from those available in shops (such as South Africa), women were concerned that taking the free formula would identify them as HIV-positive (24,31).

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Stigma Stigma was perhaps the most frequently cited barrier to attending PMTCT services and often described as the most important barrier amongst a range of others. Stigma and discrimination were feared and/or experienced both within the health care setting and in the community more broadly. Importantly, many women struggled to disclose their HIV diagnosis to their partner for fear of negative repercussions that reflect pervasive societal stigma (6,10,15– 17,19,20,22,23,25,27–30). Where emphasis was placed on women bringing their partners for HIV testing, this engendered anxiety among women (14). Since male partners’ level of support positively or negatively affects women’s uptake of services, additional support is needed for informed decision-making with regard to disclosure and assistance with how and when to disclose a diagnosis of HIV.

Uptake of antiretroviral prophylaxis for PMTCT Few studies drew an explicit link between women’s experiences in PMTCT services and their use of antiretroviral prophylaxis for PMTCT. However, nine studies specifically sought to explain why women did not adhere to antiretroviral prophylaxis for PMTCT (as opposed to PMTCT services more generally): one each in Kenya, Rwanda and Thailand and two each in Botswana, Malawi and South Africa. Table A2 in Annex 4 provides an overview of these studies. Little evidence in current literature indicates that actual ingestion of antiretroviral prophylaxis for PMTCT is linked to women’s experiences within PMTCT services. The most relevant factors seem to be that irregular antenatal care attendance, which might be linked to experiences within antenatal care or PMTCT, and low levels of trust in health workers were linked to non-use of antiretroviral prophylaxis for PMTCT in some settings (30,35). Better counselling might help mitigate some of the other barriers identified, but this link was only made in the study in Thailand in which participants noted that information on antiretroviral drugs and their advantages facilitated their uptake (30). The earliest studies in this review all focused on monotherapy prophylaxis, with the first dual therapy study appearing in 2007 from Botswana (21). The first data on triple therapy were published in 2010 (13). More recent studies cover this whole range of prophylactic regimens, albeit with monotherapy becoming less frequently used. Some studies provide no information on the PMTCT regimen that was used. No evidence from the studies reviewed indicates that the increasing complexity of PMTCT regimens over time has exacerbated the barriers to the uptake of PMTCT services. However, since no study included women who had experienced multiple pregnancies while HIV-positive who might therefore have been exposed to different PMTCT regimens, this evidence may not exist.

Uptake of long-term HIV care and treatment services for women’s own HIV infection Experiences within health services Across a wide range of geographical settings, health facility factors were reported as barriers to the uptake of long-term HIV care and treatment services. These were similar to the factors affecting the uptake of PMTCT services and included: distance and cost of attending the clinic; long waiting times; general dislike of the facility; systematic gaps in referral processes; lack of faith in the health services and/or providers; being informed that services were not available when sought; and poor provider–patient interactions (see earlier). The reasons underlying women’s

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“general dislike” of health facilities or lack of faith in health services were often not elucidated in studies. A study in India found that, although 41% of study participants knew about HAART, only 1 in 5 reported that their PMTCT provider had informed them of these services (13). Similarly, a study in the United Republic of Tanzania reported that 17/38 (45%) women did not understand why attending an HIV clinic soon after diagnosis is important (36). In Malawi, women did not perceive HAART as part of the package for women attending PMTCT services, suggesting that health workers failed to provide this information to PMTCT clients and that parallel systems of service delivery persisted (15). This echoes findings from a different study in Malawi that also highlighted a disconnect between PMTCT and long-term care and treatment services, with health workers not referring women to HIV care because they were asymptomatic and thus perceived as healthy (9). In contrast, women felt that their health was neglected, with PMTCT focusing almost exclusively on the infant’s health and that they were abandoned by the health system after PMTCT. In the United Republic of Tanzania, infrequent attendance at antenatal care was strongly associated with lack of attendance at ongoing care, suggesting either that regular attendance at antenatal care reflects good health-seeking practices more generally or that antenatal care appointments constitute a valuable opportunity for encouraging women to access HIV-related care (36). In a study in Uganda, women reported being given written information on HAART, which they did not like either because they could not read it or because they feared that other people would find it (5). In contrast, in a study in Malawi, women lamented the lack of written reminders that they thought would help them better keep appointments (29). These women also suggested that home visits might improve uptake of services, which contrasts with information from women in other settings, who found home visits intrusive (19). In a study in Botswana, 64% of women had been told the procedures to follow to be evaluated for treatment yet 43% reported being “very worried” that getting care for their disease would be difficult (33).2 The authors suggest that women might benefit from additional counselling a few days after their diagnosis due to clients’ limited ability to absorb counselling messages immediately following diagnosis with HIV. Across different settings, women living with HIV noted the need for time to accept their diagnosis, which they saw as a precursor to attending services (6). This was echoed by health workers in South Africa, who highlighted women’s need for time to accept their diagnosis and need for lifelong HAART (27). Two studies found that women who had enrolled for HAART had better knowledge about HAART than women who had not enrolled, but the direction of causality in this association is unclear (5,34). Facilitators for entry into and retention in HIV care in Kenya included health education and counselling, free services, compassion, free food or other incentives and assurances of confidentiality (34). Conversely, the primary reasons for discontinued attendance at an HIV clinic among women who initially attended were: ineligibility for HAART, migration, long distance to the health facility, side effects of medications, pregnancy, dislike of the health facility, issues regarding confidentiality, stigma, poor services and lack of money (34). 2

This study is based on data from a survey carried out in 2003, when it may indeed have been more difficult to access long-term HIV care and treatment services.

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In a study in Uganda looking at uptake of long-term HIV care and treatment services, 33% of participants reported rude comments, shouting or neglect by health workers as reasons not to return to the health facility (5). In South Africa, women participating in the mothers2mothers programme were significantly more likely to reveal their HIV status to at least one person, receive CD4 count testing during pregnancy, receive NVP for themselves and their infants and practice an exclusive method of infant feeding (usually formula feeding) (13). In a study in Malawi, women also noted that positive interactions with staff, including emotional support and comfort, facilitated uptake of long-term HIV care and treatment services (32). I also came to this clinic because the counselling was reassuring. [pregnant woman]

Personal and community-related factors Fear of disclosure and, more specifically, fear of potential repercussions of disclosure to male partners, was frequently mentioned as a barrier to accessing care and treatment services. Across Kenya, Uganda and the United Republic of Tanzania, women feared that blame, abandonment, divorce, domestic violence and loss of financial support might result from disclosure of their HIV status to their partner (5,34,36). The reason why I did not tell my husband is that I thought that when he sees me taking the drugs he will say that I am the one who has brought the disease and he will beat me. I was taking the drugs secretly and thereafter said to myself, how long will I keep hiding the drugs, and I decided to leave the drugs. [defaulted on HAART] (5)

In Kenya, women not having informed their partner of their referral to HIV care and treatment services was associated with non-attendance at the HIV clinic (P = 0.001) (34). Economic burdens associated with frequent visits to the health facility also emerged as an impediment to access to services, especially in the context of financial dependence on a partner. Stigma more broadly was also mentioned in Kenya and Uganda, with women reporting reluctance to engage in any behaviour (including clinic attendance) that might allow others to infer their HIV status (5,34). One study found an association between depression and reduced adherence to treatment (18). A study in Uganda identified some facilitators to accessing care and treatment services, including staying alive to support children and free drugs (18).

Uptake of follow-up services for infants In South Africa, a study found that women were unaware of early infant HIV diagnosis services and were not guided there by health workers, which impeded uptake (24). In a separate South African study, barriers to infant testing cited by young women included: fear of the stigma of having a child “publicly tested”, fear of rejection by her family, fears regarding confidentiality and fears regarding the potential that their own status might be revealed (4). Fear surrounding how to disclose to the child their HIV status was cited as a barrier to accessing follow-up services for the child in Uganda, but seeing improvements in child health and packaging that separated medications into daily doses were seen to facilitate adherence (18).

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In Swaziland, introducing a postpartum hospital visit within one week of delivery led to significant increases in mothers and infants starting co-trimoxazole prophylaxis (P < 0.01 for each) (13).

Women’s attitudes towards immediate initiation of lifelong HAART (PMTCT option B+) Data on this topic were explicitly searched for in all articles in the review, but none of the articles included any insight into this area. However, denial and women “not feeling ready” to attend the HIV clinic, which emerged as barriers to accessing long-term HIV care and treatment services, might also be understood as a potential barrier to the immediate initiation of lifelong HAART. In addition, a study in the United Republic of Tanzania found that 4/38 (11%) women had not attended an HIV clinic by delivery because they wanted to wait until after they had had their child, while a study in South Africa highlighted some women’s fear to take antiretroviral medicines during pregnancy for fear of harming their baby (27,36). Research in Kenya found that 11% of women did not believe that HAART was effective, limiting their willingness to attend the HIV clinic (34). Further, this same study found that women who did not access long-term HIV care and treatment services were less likely to report correct information and beliefs on HIV and its treatment. Among other measures of knowledge, researchers found that women who had not attended the HIV clinic were more likely to believe that HAART was started at diagnosis (27% versus 7%; P < 0.001). The study included no further information how this misperception might affect women’s decisions relating to accessing HIV services.

Research needs going forward In the context of a rapidly evolving policy environment based on advances in biomedical science, some critical questions remain unanswered. Further attention is needed to how to make PMTCT interventions acceptable, even desirable, to women diagnosed with HIV in the context of pregnancy – if demand is lacking, even in the context of available services, mother-to-child HIV transmission will remain high. Research questions in this area might include the following. 1. How can PMTCT programmes optimally balance the biomedical imperative for immediate initiation of antiretroviral drugs with the human dimension of requiring time to process an HIV diagnosis? 2. To promote uptake of and adherence to antiretroviral drugs (whether prophylactic or lifelong), how much counselling is required (before and after initiation of treatment)? Who is most effective at providing this counselling? How should they be optimally trained and supported? 3. What type of counselling messages might best promote the uptake of follow-on HIVrelated services for women and their infants? 4. How acceptable is the immediate initiation of lifelong HAART during pregnancy to women diagnosed with HIV in this context? What processes might increase its acceptability? 5. What interventions with health workers might promote better support for and more positive interactions with clients?

WHO/HIV/2013.47

The heterogeneity of populations and epidemics should be taken into account in any of this research, since different approaches to service delivery may be required in different contexts.

Conclusion The evidence regarding how women’s experiences in PMTCT services affect their subsequent care-seeking behaviour remains sparse, since few studies have specifically sought to assess this link. This appears to be particularly true with regard to the uptake of both long-term HIV care and treatment for the woman’s own HIV infection and infant HIV testing and related services. There is also a striking paucity of information regarding women’s attitudes towards initiating HAART during pregnancy. This is particularly true outside the context of sub-Saharan Africa, where most of the studies reviewed were carried out. As the point of contact with the health system, health workers play the most critical role in shaping women’s experiences of PMTCT services. Many studies underscored the importance to women of the quality of health worker–client interactions and how this affected care-seeking behaviour. Supporting health workers and ensuring that they have sufficient knowledge, time and resources to fulfil their responsibilities might improve clients’ experiences of attending services and encourage better uptake of HIV-related services. Addressing additional barriers within the health system, such as costs, geographical accessibility and lack of coordination between services may also be required. Despite this review’s focus on health services, it is clear that factors within the broader community also affect women’s care-seeking behaviour and thus will require attention in any efforts to improve the uptake of HIV-related services. Further, health workers’ discriminatory attitudes and behaviour likely reflect societal attitudes, highlighting the need for action both within and outside the health care setting. A better understanding of women’s experiences of and perspectives on current and proposed interventions and how these influence subsequent care-seeking behaviour is required to ensure that an appropriate and acceptable package of services can be offered and that the virtual elimination of mother-to child HIV transmission can become an attainable goal.

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Annex 1. Results of systematic searches PubMed 1 2 3 4 5 6 7 8 9 HIV AND pregnancy AND qualitative HIV AND pregnancy AND experience HIV AND pregnancy AND quality HIV AND pregnancy AND linkage HIV AND pregnancy AND decision HIV AND pregnancy AND diagnosis HIV AND PMTCT AND qualitative HIV AND PMTCT AND barrier ("hiv seropositivity/ diagnosis"(MeSH Terms)) AND "pregnancy"(MeSH Terms)) AND (qualitative research(MeSH Terms) OR interviews as topic(MeSH Terms)) Total 116 172 152 20 104 260 34 10 6 WOS 144 411 184 34 231 363 34 55 EMBASE 180 354 66 36 61 161 6 4 Total 440 937 402 90 396 784 74 69 6

874

1,456

868

3,198

WHO/HIV/2013.47

Annex 2. Criteria for considering a study “fatally flawed” Following well-established criteria, a study was considered to be fatally flawed if, having read it, we answered no to any of the following questions. - Are the aims and objectives of the research clearly stated? Is the research design clearly specified and appropriate for the aims and objectives of the research? Do the researchers provide a clear account of the process by which their findings were produced? Do the researchers display enough data to support their interpretations and conclusions? Is the method of analysis appropriate and adequately explicated?

Source: Dixon-Woods et al. (37).

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Annex 3. Table A1: overview of studies in the review First author and year of publication

Title

Country

Study objectives

Study design

Setting

Population

Anderson; 2012

Community voices: barriers and opportunities for programmes to successfully prevent vertical transmission of HIV identified through consultations among people living with HIV

Baek; 2010

Bwirire; 2008

ByakikaTusiime; 2009

Looking back, moving forward: implementing PMTCT programs in resourceconstrained settings Reasons for loss to follow-up among mothers registered in a PMTCT program in rural Malawi Longitudinal antiretroviral adherence in HIV+ Ugandan parents and their children initiating HAART in the MTCT-Plus family treatment model: role of depression in declining adherence over time HIV positive pregnant women who do not follow prenatal prophylaxis

Global Botswana, India, Kenya, South Africa, Swaziland , Zambia

To collect perspectives of people living with HIV on PMTCT to inform WHO strategy To document feasibility and challenges of PMTCT programmes as well as quality of services and effectiveness of strategies to promote utilization and adherence to recommended practices To identify reasons for a high and progressive loss to follow-up among HIV+ mothers within a PMTCT program

Online consultation

People living with HIV

Comments Focus is PMTCT prongs 1 and 2 but some relevant information about PMTCT more broadly. Study population is people living with HIV, not necessarily women who have been diagnosed with HIV in the context of pregnancy.

Operations research: mix of surveys, evaluations, interviews, observations, record reviews

Multiple Thyolo district (rural), southern Malawi

Multiple different populations

Programme documentation of Horizons projects

Malawi

Focus group discussions (n=3)

10 pre- and post-natal women, 9 nurse midwives

Uganda

To assess the effect of family-based treatment on adherence among parents living with HIV and their children living with HIV

Prospective cohort (n = 177), focus group discussions (n = 3).

Cechim; 2007

Brazil

To investigate non-adherence to prenatal PMTCT.

Qualitative interviews (n = 7)

Mulago hospital, Kampala University hospital, Porto Alegre, Rio Grande do Sul

Chinkonde; 2009

The prevention of mother-tochild HIV transmission programme in Lilongwe, Malawi: why do so many women drop out? Preventing HIV transmission to children: quality of counselling of mothers in South Africa

Malawi

To clarify why some women who enrolled in a PMTCT programme did not fully participate in followup visits in the first 6 months after diagnosis.

In-depth interviews (n = 28); focus group discussions (n = 6) Structured observation of counselling sessions; structured exit interviews (n = 60)

Chopra; 2005

South Africa

To examine the quality of VCT in three PMTCT sites

2 UNC-supported PMTCT clinics Lilongwe Peri-urban township; periurban/rural site; rural site

Participants in the MTCTPlus programme: women living with HIV, HIVpositive male partners, HIVnegative male partners Seven postpartum women living with HIV who did not take antiretroviral prophylaxis for PMTCT Interviews: 14 women who fully participated in the PMTCT programme and 14 who dropped out. focus group discussions: 28 women attending PMTCT; 12 participants’ husbands. PMTCT; women attending (some HIV-positive, some HIV-negative)

Nothing about experiences of health services. All other reasons for non-adherence

Focused on feeding practices rather than PMTCT interventions more broadly.

WHO/HIV/2013.47 First author and year of publication Title Country Study objectives Study design Setting 10 antenatal care clinics in Francistown, 2 clinics in an adjacent rural area and the maternity unit of the public hospital in Francistown 12 public sector health facilities providing PMTCT services

Creek; 2007

Factors associated with low early uptake of a national PMTCT program: results of a survey of mothers and providers, Botswana, 2003 Determinants of non-adherence to a single-dose NVP regimen for PMTCT in Rwanda Barriers to accessing HAART by HIV-positive women attending an antenatal clinic in a regional hospital in western Uganda

Botswana

Delvaux; 2009

Rwanda

To explore reasons for poor uptake of PMTCT services To describe experiences and identify factors associated with non-adherence to sdNVP in the PMTCT programme in Rwanda

Survey and review of medical records (n = 504)

Case-control study (n = 236) Qualitative descriptive exploratory study. In-depth interviews (n = 45). Focus group discussion (n = 1).

Pregnant and postpartum women (mixed or unknown status); 82 health workers 236 adult women living with HIV (125 sdNVP adherent; 111 non-adherent) attending PMTCT clinics

Duff; 2010

Uganda

To describe barriers to accessing and accepting HAART by mothers living with HIV

Kabarole District’s referral hospital

Gilles; 2011

Factors influencing utilization of postpartum CD4 count testing by HIV-positive women not yet eligible for ART

Hardon; 2012

Women’s views on consent, counseling and confidentiality in PMTCT: a mixed-methods study in four African countries

Malawi Burkina Faso, Kenya, Malawi and Uganda

To examine factors influencing women’s utilization of extended CD4 count testing To assess the quality of information provision and counselling and disclosure patterns to identify how services can be improved to enable better PMTCT outcomes

Interviews (n = 53)

UNC clinics, Lilongwe

women living with HIV who attended the PMTCT-Plus Programme 19 pregnant women living with HIV returning for the results of their first CD4 count; 9 women living with HIV getting a follow-up CD4 count; 20 nurses; 5 key informants

About uptake of CD4 count testing

Policy review; MATCH survey (n = 408); semi-structured interviews (n = 63); in-depth interviews (n = 35)

In each country: the capital region and one rural province or district

Hardon; 2009 Kasenga; 2010

Kebaabetswe; 2011

Kinuthia; 2011

Preventing mother-to-child transmission of HIV in Viet Nam and Indonesia: Diverging care dynamics HIV-positive women’s experiences of a PMTCT programme in rural Malawi Barriers to participation in the PMTCT program in Gabarone, Botswana: a qualitative approach Uptake of PMTCT interventions in Kenya; health systems are more influential than stigma

Indonesia, Viet Nam

Malawi

Botswana

Kenya

To explore local dynamics of PMTCT care To explore women’s experiences of a PMTCT programme in rural Malawi To understand factors that motivated and hindered pregnant women from participating in the PMTCT programme To determine the relative roles of stigma versus health systems in non-uptake of PMTCT interventions

Multi-site anthropological study: observation, group discussions, interviews (n = 272; semistructured interviews and exit interviews)

In-depth interviews (n = 24)

4 cities: Jakarta and Karawang; Hanoi and Thai Nguyen Mission teaching hospital, southern Malawi

PMTCT clients (some HIVpositive, some HIV-negative); health workers; key informants Indonesia: 20 pregnant women in a PMTCT programme, 37 women living with HIV and 13 health workers. Viet Nam: 51 PMTCT clients, 94 health workers, 52 support group members Postnatal women living with HIV participating in a PMTCT programme 20 pregnant women living with HIV, 9 health workers, 10 key informants. Mothers accompanying infants for 6-week immunizations

In-depth interviews (n = 39)

Cross-sectional questionnaire

4 clinics, Gabarone 6 maternal and child clinics Nairobi and Nyanza provinces

WHO/HIV/2013.47 First author and year of publication Title Country Study objectives Study design Setting

La Ruche; 2008

Laher; 2012

Larsson; 2011

PMTCT: reviewing a programme in Benin Conversations with mothers: exploring reasons for PMTCT failures in the era of programmatic scale-up in Soweto, South Africa Opt-out HIV testing during antenatal care: experiences of pregnant women in rural Uganda

Benin

To review the PMTCT programme

Survey; observation; interviews (n = 397) Structured questionnaires (n = 45); focus group discussions (n = 2); individual structured interviews (n = 35)

56 PMTCT sites across Benin

South Africa

To investigate reasons for incident cases of vertical HIV transmission in the era of free access to PMTCT To explore how pregnant women experience the new opt-out HIV testing policy To examine women’s decisions about HIV testing and their experience of PMTCT and HIVrelated care in one clinic in Lilongwe, Malawi To describe the experiences and the short-term, current and long-term concerns of women living with HIV participating in a short-term AZT intervention feasibility study To investigate the challenges faced by Zulu women living with HIV in taking short-course and longerduration triple ART for PMTCT

Chris Hani Barangwanath Hospital, Soweto Rural districts of Iganga and Mayuge

Mothers of infants living with HIV who had accessed early infant diagnosis services Women attending PMTCT services (8 HIV-positive; 10 unknown) 34 women attending a PMTCT programme; 21 women in a postnatal PMTCT support group; 21 key informants from the PMTCT programme/health system 31 pregnant or post-natal women living with HIV attending outpatient gynaecology or obstetrics departments at local hospitals; 19 health workers Pregnant Zulu women living with HIV enrolled in Kesho Bora who attended the PMTCT clinic

Uganda

Observation; semistructured interviews (n = 18)

Levy; 2009

Women’s expectations of treatment and care after an antenatal HIV diagnosis in Lilongwe, Malawi

Malawi

Interviews (n = 55), focus group discussions (n = 4)

Lilongwe

Mawar; 2007

Mepham; 2011

Concerns and experiences of women participating in a shortterm AZT intervention feasibility study for PMTCT Challenges in PMTCT antiretroviral adherence in northern KwaZulu Natal, South Africa

India

In-depth interviews (n = 50)

Maharastra, two urban sites, one rural

Barriers cited are to participation in this AZT study: this precedes the rollout of the intervention Could be biased because all participants also enrolled in a clinical trial

South Africa

Moth; 2005

Nassali; 2009

Nkonki; 2007

Assessment of utilisation of PMTCT services at Nyanza Provincial Hospital, Kenya Access to HIV/AIDS care for mothers and children in subSaharan Africa: adherence to the postnatal PMTCT program Missed opportunities for participation in PMTCT programmes: Simplicity of nevirapine does not necessarily lead to optimal uptake, a qualitative study

Kenya

To assess the utilization of PMTCT services among mothers registered for services To determine adherence to the postnatal PMTCT programme and the associated factors To gain an understanding of women’s experiences of antenatal care and to identify missed opportunities for participation in PMTCT (NVP uptake)

Pill count, record review, unstructured interviews (n = 43) Cross-sectional review of logbooks, exit interviews (n = 103), in-depth interviews (n = 30), observation, testimonies on experiences. Cross-sectional questionnaire (n = 289); focus group discussions (n = 2)

Rural Kwa-Zulu Natal

Uganda

Kisumu – urban Mulago hospital – national referral and teaching hospital, Kampala

Women participating in the PMTCT programme; health workers Postnatal mothers living with HIV on discharge from delivery

Totally focused on postnatal PMTCT

South Africa

Semistructured interviews (n = 58)

2 peri-urban areas; poor rural area.

O’Gorman; 2010

PMTCT: Views and perceptions about swallowing Nevirapine in rural Lilongwe, Malawi

Malawi

To explore views about and perceptions of PMTCT ARVs

Interviews (n = 26); focus group discussions (n = 5)

Rural Lilongwe

Women living with HIV who had attended antenatal care and were part of a larger cohort study 39 antenatal and postnatal women, 12 fathers, 5 grandmothers, 5 traditional birth attendants, 5 community leaders and 4 PMTCT health workers

WHO/HIV/2013.47 First author and year of publication Title Determinants of failure to access care in mothers referred to HIV treatment programs in Nairobi, Kenya Country Study objectives To determine rates and co-factors of accessing HIV care by women living with HIV exiting maternal care To find out why pregnant women who receive HIV-positive test results and are offered short-course ARV prophylaxis for PMTCT do not participate in necessary followup visits before starting prophylaxis To explore the role of HIVassociated stigma as a barrier to access services for preventing parent-to-child transmission Study design Setting

Otieno; 2010

Kenya

Survey (n = 116)

Painter; 2004

Women’s reasons for not participating in follow-up visits before starting short course ARV prophylaxis for PMTCT: qualitative interview study

Côte d’Ivoire

Qualitative interviews (n = 27)

Nairobi Public antenatal care in Abidjan (public health partnership between Ministry of Health and US CDC)

Rahangdale; 2010

Stigma as experienced by women accessing PPTCT services in Karnataka, India Health system weaknesses constrain access to PMTCT and maternal HIV services in South Africa: a qualitative enquiry An evaluation of approaches to the initiation of antiretroviral therapy during pregnancy among HIV-infected women in Cape Town Evaluating programs to PMTCT in 2 large Bangkok hospitals, 1999–2001

India

In-depth interviews (n = 14); focus group discussions (n = 3)

Rural northern Karnataka district

Women diagnosed with HIV but who did not take ARV prophylaxis 14 women living with HIV who had participated in the programme; 6 male and 5 female family members; 8 HIV service providers

Sprague; 2011

South Africa

To investigate barriers facing pregnant women seeking access to PMTCT services To evaluate existing models of care for women living with HIV who are eligible for HAART initiation during pregnancy To determine programme uptake and understand better the reasons why some women did not use programme interventions

In-depth interviews (n = 153); record review

4 public health facilities, Gauteng, Eastern Cape

83 women living with HIV, 32 female caregivers of children living with HIV, 38 key informants

Participant bias of high knowledge on PMTCT due to education via the NGO that recruited for this study PMTCT barriers also include chronic care Notes that this behaviour is firmly rooted within sociocultural norms, such as stigma and breastfeeding

Stinson; 2008

South Africa

Programme review; interviews (n = 50)

Cape Town

29 pregnant or postpartum women living with HIV; 21 health workers

Teeraratkul; 2005

Thailand

Varga; 2008

Factors influencing teen mothers’ enrolment and participation in PMTCT services in Limpopo Province, South Africa

South Africa

Watson-Jones; 2012

Missed opportunities: Poor linkage into ongoing care for HIV-positive pregnant women in Mwanza, Tanzania

United Republic of Tanzania

To examine barriers to HIV testing uptake and participation in PMTCT services To measure whether women living with HIV identified through PMTCT received appropriate referral and care for their own health concerning HIV and to explore individual and provider barriers that could explain why they did not attend

Cross-sectional survey (n = 488); record review Narrative research method: key informants constructing representative narrative case studies; community survey comprising vignettes from the narrative (n = 100); focus group discussions

Bangkok, 2 largest maternity hospitals

Postpartum women living with HIV

Limpopo province: rural and urban

Adolescent mothers 15–19 years old

Not first-hand experiences

Prospective cohort (n = 403); observation of PMTCT services; structured interviews

Two large government hospitals in Mwanza city

Women attending maternity wards; health workers

WHO/HIV/2013.47

Annex 4. Table A2: non-adherence to antiretroviral prophylaxis for PMTCT First author; year of publication Baek; 2010

Country Botswana

Regimen Triple therapy

Quantitative adherence findings 30–40% reported missing at least some doses during pregnancy. Two women did not want to take ARV prophylaxis. A further 5/29 postpartum women did not received antiretroviral prophylaxis for PMTCT

Reasons for non-adherence to ARV prophylaxis Primary reason: they had run out of medications. Of those who did not want to take prophylaxis, one gave no reason for this and one did not believe her diagnosis. Reasons for non-receipt of prophylaxis among postpartum women were: early delivery, late receipt of test results or testing after delivery. More than one third of non-adherent women never received sdNVP despite all attending antenatal care at a health facility providing PMTCT services. Non-adherence was even high among women who delivered at a health facility. Experiences with antenatal care and testing: non-adherent women: made fewer antenatal care visits (P < 0.001), were more likely to present at later gestational ages (P = 0.05), disclosed less to partners (P = 0.07) and family friends or others (P < 0.001), were more likely to have an HIV-negative partner (P = 0.004) and were less likely to trust the antenatal care staff very much (P = 0.01). Non-adherent women: discussed antiretroviral prophylaxis for PMTCT less (P = 0.01), had unsupportive partners (P = 0.05), were more likely to deliver at home (P = 0.001). Reasons for noningestion: forgot (30%), were afraid (30%), labour progressed too fast (20%), husband or someone else was present (and presumably they hadn’t disclosed; 20%). Ingestion at the wrong time: instructed to do so by health worker (40%), labour occurred too quickly or did not realize in labour (25%), had not received specific instructions about when to take it (17%), forgot (14%). Non-adherence to infant NVP: not aware child was supposed to go to health facility (34%), too ill or weak or did not have assistance to bring child (30%), did not think child could get HIV (27%), health facility was far from home (15%). Unmarried women and women with little or no education were less likely to ingest NVP at all or at the recommended time (themselves and their infant). Maternal non-adherence strongly predicted infant non-adherence. Home deliveries assisted by traditional birth attendants, grandmothers or other family members. If NVP is taken, this is usually done in private. Difficult to get infant to the hospital for NVP syrup.

Creek; 2009

Botswana

AZT and sdNVP

Delvaux; 2009 Kasenga; 2010

Rwanda Malawi

sdNVP sdNVP

111/236 (47%) mother and/or infant did not ingest NVP at all or at the recommended time. Of these, in 47 cases neither mother nor child ingested sdNVP, in 52 cases only the mother ingested sdNVP as recommended, in 6 cases only the child ingested sdNVP as recommended and in 6 cases the mother or child ingested sdNVP but not as recommended

Kinuthia; 2011

Kenya

AZT and/or sdNVP

Maternal ARVs were not dispensed to 11% of women; of those given drugs, 11% failed to take them. Among infants, 16% were not dispensed ARVs; of those given drugs, 2% did not ingest them.

In multivariable regression, non-facility delivery and thinking that people living with HIV should be ashamed were independently associated with failure to use ARVs (p=0.001 and p=0.004 respectively).

WHO/HIV/2013.47 First author; year of publication

Country

Regimen

Quantitative adherence findings Adherence ranged from 67% to 100% with a mean of 92%. 57/94 (61%) achieved >95% adherence. No significant difference in adherence between short course and triple therapy (94.3% versus 94.2%; P = 0.41) or between duration of prophylaxis between poor and good adherers (102 days versus 88 days; P = 0.72). 7 women tested, knew their HIV positive status but did not receive NVP at the correct time or at all.

Reasons for non-adherence to ARV prophylaxis

Mepham; 2011 Nkonki; 2007

South Africa South Africa

Short-course AZT monotherapy and triple therapy

Intrapersonal reasons: misunderstandings or misconceptions about the drugs; inability to understand English instructions on the drugs; interrupted personal routines (such as moving home); forgetting; miscellaneous (such as dropping tablets on the floor). Interpersonal reasons: HIV-infected relatives stealing tablets; actual or threatened domestic violence; challenges of rural life (such as water collection); miscellaneous (such as lent tablets to a friend). Social reasons: fear of disclosing; hiding ARVs The main reasons for not taking NVP were: lost it, forgot because of intense labour, did not believe test results, given wrong instructions about when to take it, not being given NVP during delivery. Fear of divorce and community stigma more generally were often mentioned as reasons for nondisclosure of status and uptake of prophylaxis. Delivering at the traditional birth attendant’s clinic was seen as a way to avoid hospital delivery where ill-treatment was reported but also meant no access to NVP. Infant receipt of NVP was often jeopardized by the ill health of the mother after delivery such as inability to walk because of pain or bleeding. No antenatal AZT: Did not know about AZT (47%), inconsistent antenatal care (20%), delivered before AZT started (15%). Missing doses of antenatal AZT: failure to keep antenatal care appointment (34%), forgot dose (32%), did not have pills near when dose due (12%), illness (10%). No intrapartum AZT: delivery occurred before drug could be given (57%), nurse forgot or misunderstood procedures (21%), unknown (21%). Missing doses of newborn AZT: forgot (57%), parent was sleeping (23%), child was out of the house (9%), child was sleeping (8%), mother concerned about disclosing HIV status (3%).

sdNVP

O’Gorman; 2010

Malawi

sdNVP

Teeraratkul; 2005

Thailand

Antenatal and intrapartum AZT

347/488 (71%) took antenatal AZT. 372/488 (76%) took intrapartum AZT. All 495 newborns started prophylactic AZT, 99% within 12 hours.

WHO/HIV/2013.47

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Основные сведения

Организация Всемирная организация здравоохранения (ВОЗ / WHO)

Тип документа Technical Documents

Дата принятия 14 октября 2013 г.

Источник Всемирная организация здравоохранения