Lack of social support after diagnosis and inadequate counselling about HIV treatment and HIV disclosure were identified as key reasons for dropping out of HIV care after starting antiretroviral treatment during pregnancy, Malawian women living with HIV told researchers in a qualitative study published this month in PLOS One.

Malawi was the first country to recommend antiretroviral treatment for life for all pregnant women with HIV, regardless of CD4 count, in 2011, and named the strategy `Option B+` because it went beyond existing World Health Organization guidance. The World Health Organization subsequently adopted the Option B+ approach as its preferred strategy for preventing mother-to-child HIV transmission and ensuring antiretroviral treatment for women.

The Option B+ approach has been hugely successful in getting women onto treatment in Malawi and other African countries but there is now evidence from Malawi, Uganda and Mozambique that up to half of women who start treatment during pregnancy are either lost to follow-up within six months or do not return to the clinic to collect more medication after their first prescription runs out.

Although studies have shown stigma, fear of HIV disclosure, younger age, starting ART on the day of diagnosis and lower educational level to be associated with loss to follow-up, there is a lack of evidence from the patient’s perspective on barriers to taking ART and how those barriers might be overcome. In particular, programmes lack the perspectives of women who have discontinued HIV care.

The study consisted of in-depth interviews with 39 women who had started antiretroviral treatment during pregnancy or breastfeeding at Bwaila Hospital, Lilongwe. Fourteen of the women were in care but 25 had been out of care and had been traced through the existing clinic patient tracing system. Tracing takes place if women are more than 21 days late for a scheduled appointment.

All participants underwent a semi-structured interview about their experiences of pre- and post-test HIV counselling, ART initiation, follow-up care and reasons for discontinuing and resuming HIV treatment. The themes emerging from the interviews were analysed by the researchers.

Acceptance of treatment was facilitated by knowing that it was possible to live a long and healthy life by taking treatment, and by seeing others in the community who were doing well on medication, but many of the 31 women who started treatment on the day of diagnosis reported being overwhelmed by the situation and fearful of what lay ahead. Fear of side effects and fear of partner reactions to HIV disclosure were common.

Support from treatment supporters or `guardians` was identified as an important reason why women had remained in care and adherent to ART. Having a supportive husband or partner was especially important, but so too was support and encouragement from health care providers.

Almost all women who fell out of care said that they lacked strong support and half reported problems with their partner after HIV disclosure. Lack of relatives living nearby often exacerbated feelings of isolation and lack of support. Problems with partners or the need to visit relatives often meant a move to another location, disrupting care, or an inability to attend the clinic due to lack of support.

One woman explained the complex relationship between partner support, economic dependence, family support and clinic attendance, and the way in which a potential barrier might be mitigated by cash support:

“Sometimes I want to come to the hospital, but due to the lack of transport money I don’t. If money is available it may be easy for me to take the drugs. There are no relatives around [to provide transportation assistance], as they are all in the village and I stay with my husband. So if he finds the money, I can come and collect the drugs.”

Ten out of 31 women stopped treatment and re-started again. In all cases healthcare provider encouragement was cited as a reason for resuming treatment. Ability to disclose difficulties in taking medication was also an important factor in resuming treatment for some women.

The authors concluded that two factors seemed especially important in ensuring continuity of care and adherence to treatment.

Social support systems appear critical to adherence and retention in care. Partners, family, friends and healthcare providers all played a role in providing this support, and where this network was weaker, women tended to report more difficulties. Assisting disclosure, promoting male partner participation in testing and treatment and coaching of women in disclosure techniques and asking for support may strengthen social support, as can peer support. Health care providers also need to address mobility and plan for possible problems at the start of treatment, the researchers say. Allowing women to collect extra drugs or designing systems for community-based medication distribution might help overcome difficulties in attending clinic appointments.

Counselling is also identified as crucial in establishing the need for treatment initiation and adherence, but researchers found little evidence that counselling emphasised the lifelong nature of treatment, prepared women for side-effects or addressed difficulties regarding disclosure and social support. They found that most women who were out of care had received little counselling at treatment initiation, and if it was provided, counselling tended to focus on the need to take ART to protect the health of the infant.

The researchers conclude, ”strategies that recommend universal initiation of ART in asymptomatic individuals need also to promote improved counselling at initiation along with a case-based management plan that considers the individuals’ plans for disclosure and social support needs.”

“Initial and active follow-up counselling regarding side effects, women’s empowerment interventions, promotion of counselling schemes that use mentor or peer mothers, and meaningful engagement of male partners may promote sustained ART retention among Option B+ women.”