Demographic characteristics of study participants
Forty-six participants completed interviews between March 10 and April27/ 2019 against the 57 expected interviews due to data saturation. The sample consisted of mainly females (73.9%) with age ranging from 20-59 years and 30-39 age groups being the modal age group (31.1%). Mothers and health professionals constituted 73.91% and 26.09% respectively. More demographic characteristics are presented in Table3a and Table3b.
The results were categorized into two major groups; first addressing determinants of LFTU and child mortality, and secondly, recommendations to reduce LFTU and child mortality due to HIV in the Amhara region. Five (5) themes were identified as determinants of LTFU and child mortality, while four (4) themes were deduced as recommendations to minimize LTFU and child mortality (Table4).
Determinants of loss to follow-up and child mortality
Determinants of loss to follow-up and child mortality are categorized into five themes; 1) Apathy- addressing parents’ attitudes towards their child’s health and willingness to commit to option B+ program, 2) Stigma and discrimination- capturing the parents’ fear of isolation from family and the community, self-blame and lack of disclosure of the status. 3) Access - elucidating on physical barriers to access such as distance to ART centers and resource shortages in ART centers. 4) Health care providers behavior and attitudes- highlight the lack of commitment and negative attitudes exhibited to PMTCT users by healthcare providers in the region, and 5) social determinants of health- discussing how poverty in the region lead to loss to follow-up and child mortality.
Apathy “…Sometimes I missed the time of my follow up without any apparent reason, but when health care professionals contacted me through the phone, I came back again…”M2.
Both parents and health care providers indicated that mothers’ top following up with option B+ without any valid reasons despite being aware of the benefits it carries for the child. Lack of concern was also identified as a major factor in poor child nutrition and consequently leading to illnesses and death. Mothers did not care for their children health despite being aware of the probability of the risk of being exposed to HIV. Mothers also opted for mixed feeding rather than exclusive breastfeeding or complementary feeding because they believed the chances of their child contracting HIV was low.
“…mostly mothers did not care for their children. Seriously, even when their status is disclosed, they deny ART for their children and refuse them getting HIV test…they also practice mixed feeding…”HP7
Apathy was also apparent among health care professionals lack of drive for the program and patient-centeredness. Health care professionals often collected incomplete history, inconsistency in prescribing medicine and conducting required investigations. There was a lack of strict guidelines on medication administration, follow-up care on children and when to test them despite the WHO guidelines being available. Also, there was no clear hospital/center record on when the mothers should come for follow-up; therefore, when a mother misses her appointment; it takes time to know about it. Also when it is apparent that the mother is lost to follow-up, healthcare professionals did not usually call the mothers despite having access to their contact details, phones to call and even transport to check on the patients in their villages when necessary.
“….she has not prescribed medications like co-trimoxazole if the child looks healthy most of the time I was not sending the sample to the laboratory if the mothers did not complain that their children had gastrointestinal, genitor-urinary, and other sign of illness…” HP12
Stigma and discrimination
“…the emotion of my family is variable, and they discriminate and condemn me as a guilty. Thus, I am not interested and focused on the follow-up; rather I worried about the view and opinion of my family…” M10
Stigma and discrimination were identified as a major hurdle for parents to continue with the PMTCT and also to adhere to exclusive breastfeeding or formula feeding leading to the HIV infection of the children. It was also indicated as a direct cause of mortality due to the lack of testing of children by parents despite knowing the risk the child faces. In Amhara region, stigma and discrimination emanate from the lack of acceptance by the family and lack of understanding by the health professionals.
“…When I was going to the hospital for follow-up, the reactions of health professionals are not welcoming. Sometimes, health professionals closed the PMTCT clinic, and sometimes they show uncomfortable facial expression while I ask them to provide the necessary care…”.M6
Therefore, mothers do everything in their powers not to disclose their status or allow their children to be tested for HIV. To ensure that their status is not disclosed, mothers also practised mixed feeding or breastfeeding beyond the recommended time. The stigma and discrimination are also exacerbated by the lack of privacy when breastfeeding and father’s uncooperativeness and negligence about their own HIV status. Also, the lack of understanding of mothers and children needs and challenges by the health professionals leads to stigma and discrimination tendencies despite ethical conducts guidelines being in place
“…when I oppose breastfeeding for the child, all the families pointed towards me as are you HIV positive or. Thus, I forced to continuing breastfeeding till 2 years old of my child unless I was risky for discrimination…” M14
Health providers also identified stigma and discrimination as a major risk for LFTU and HIV child mortality in the region. Health workers stated that due to fear of stigma and discrimination many mothers do not opt for the PMTCT program and those that do, some do not complete the program due to fear and as such exposing children through mixed feeding and eventual not showing up for testing while the virus is affecting the baby if he/she is HIV positive.
“…if mothers disclosed their status, the communities, including families, discriminate them in different events like delivery of first aid measures if mothers faced accident that cause bleeding, and annual cultural celebrations...”HP3
Access to services was identified as one major factor in LTFU and child mortality due to HIV. Access to service theme includes the physical structure of the health facilities, resource availability, and distance to ART services for patients. The physical structure of health facilities was identified as a major hurdle to the privacy of patients and as such lead to patients not willing to participate in the PMTCT program. For instance, the lack of counseling room in majority of PMTCT facilities was cited as a major reason for LTFU and parents’ unwillingness to bring their babies for testing.
“…when I visit the clinic for ANC service, they transferred me to another room that is labeled as PMTCT room…thus, it might be good if all the services provided for women handled in a secret room without label if we want to keep women’s status a secret…”M18
“…The structure of the clinic might not respect the privacy and confidentiality of the mother who visits the clinic. Mostly the room is arranged in nearby to ANC rooms. Thus, if mothers are positive, they are referred to PMTCT room which might be considered as discrimination for mothers…”HP16
Also, resource availability was identified as a major barrier towards access to the PMTCT program and often led to parents losing trust in the program and abandoning it. Both parents and health care professionals cited the chronic shortage of PMTCT service providers. The shortage of healthcare providers often leads to long waiting periods, long queues for services which often exacerbate suspicion from families and friends hence leading to stigma and discrimination. This shortage also affects the women’s contribution to their homestead and further putting them into poverty.
“…when we visit the clinic, the professionals are not available in the clinic, and we forced to turn back home without receiving the care and booking the next appointment…”M21
“…currently the attention towards PMTCT service is not good as previous. Some managers think the unit as an extra duty not as a routine duty. They did not assign sufficient staff in the PMTCT room, even when the hospital has many professionals. Furthermore, the staffs assigned in the PMTCT room did not receive any training…”HP22
Shortage and interrupted supplies of medicines were also identified as a major reason for LTFU and child mortality due to HIV. Shortage of medicines used in Option B+ program was identified as a major issue as some centers can go for some months without essential drugs such as Nevirapine leading to patients being referred to other centers. When patients are referred to other centers’, sometimes they get confused about where to continue with the services, and some do not go but rather go home leading to LFTU and eventually child infection and possible deaths. As one ART officer stated, the absence of medications like Nevirapine cause referring patients to other ART centers, but some patients were not going to other ART centers and consequently went back home
“…Most of the time the health care professionals tell us that medicine is not available, and instructs us to visit other centers…”M9
“…medicines particularly syrup preparations are frequently out of stock in ART centers’, and patients get tired on checking or being referred to other centers’, and they usually do not come for follow up...”HP19
Lastly, participants, particularly mothers, indicate that distances to ART centers are a huge problem for many of them. Also, ART centers were reported to be isolated from other services so patients cannot get comprehensive health services and had to go to other services for those services.
“…Some of the women are coming out of the town, which is far more than 10 km. This is a challenge in particular when medications are not there, and appointments moved to other days…”M11
“…According to the minister of health current PMTCT structure, the service is provided for the community in the cluster that exposes some mothers for long journey…”HP15
Healthcare providers’ attitudes
“…professionals assigned in the PMTCT department are not involved in other services, and therefore not benefiting from some of the incentives others have. Also, the professionals are part of the community in which cultural practices are ingrained, and HIV and sexuality topics are a taboo; therefore, they might display negative attitude to these women based on myths or cultural perspectives. Consequently, the quality of health service provided for these women is usually compromised…”HP9
Participants also indicated that healthcare providers often display negative attitudes toward PMTCT service consumers and also lack the commitment to the program. The negative attitudes and lack of commitment to the program have led some users to develop distrust in the program hence dropping or stopping to use the services altogether. Health care providers’ lack of interest in the program and welfare of the participants also lead some users who have lost-to follow-up does not seek services when the child gets ill or getting the child tested leading to complications and sometimes death.
“…The facial expression and gestures of health professionals while you visit OPD or other health care service and PMTCT service are different. The PMTCT staffs deny our interests; they do not want to listen about the side effects of the drugs, and cannot accept other laboratory investigations requests…” M2
“…The PMTCT service provision culture needs to be modified. The mothers’ expectations when they visit PMTCT service, are ideal. In opposite, the hospitals did not fulfill the requirement for the services as they advertise them to the mothers. Thus, the burden is for the PMTCT professionals, and would have a negative attitude as a reaction for the mothers’ expectations and hospitals preparation…” HP1
Social determinants of health
“…the social determinants like poverty, lack of husband support, and other familial responsibilities placed a burden on women, which are repeatedly reported from mothers as a cause to LTFU in the program and latter cause to child mortality.” HP19
Social determinants theme emanated from reports of poverty and socio-cultural challenges facing women in the PMTCT program such as poverty and lack of involvement of spouses. Poverty was identified as a major factor in both women loss-to follow-up and child mortality related to HIV. Poor women often did not have access to services due to distance, competing priorities of feeding their families and attending PMTCT programs. Poverty was also highlighted as a major contributor to poor nutrition and lack of care that exposes the child to many illnesses, including death.
“…Mothers from a poor household might face multiple problems. The woman might become malnourished and fasten the progress of the [HIV] infection, which might also increase the risk of the transmission to the child, or the woman might busy on finding jobs to feed their family. The child might become undernourished and develop other infections. All such scenarios might cause mothers to lose hope on life and might discontinue the PMTCT service…” HP4
Also, socio-cultural issues relating to lack of spousal involvement in maternal and child health issues were evident as contributors to LTFU and child mortality and mothers decried the lack of spousal involvement as one reason. Most women and health professionals stated the long-held cultural practices in the country aid husbands to neglect children and mothers. Usually, husbands spent the working days from Monday to Friday away from home at work, and appointments of mothers for PMTCT are also during these working hours. Therefore, if there are responsibilities that require the presence of a family member in the home during the working days, the woman is forced to discontinue the follow-up, unless there is a provision where the husband can miss work to supports them.
“…The cause for the infection is my husband, but he always claims it is me. He has not agreed on the follow-up and is not willing to visit the clinic together with me. He forced me to discontinue the care; I refused and took precautions for my child…”M3
“…I am not sure about the source of infection, but my husband always blamed me, and he thought as I am the source of infection. Thus, he is thinking that neglecting me means just punishing me for my faults. He frequently insults me and also uses physical force on the days of my follow up to prevent from visiting the clinic…”M20
Recommendations for reduction of loss-to follow-up and child mortality
Recommendations for reduction follow-up and child mortality is divided into four themes; 1) Access - addressing improvement of physical barriers, resource availability and mechanisms for follow-up, 2) Psychosocial support- capturing avenues to avail psychosocial support and building community networks for resilience, 3) Education and awareness- addressing parental and healthcare providers awareness on issues of loss-to follow-up, child mortality and making PMTCT facilities clients focused, 4) Empowerment- elucidating on areas that could be tapped into to reduce disparities and address social determinants of health.
Access theme under improvement of PMTCT aimed at eliminating both physical barriers, resource shortages, improving quality of services and devising mechanisms for follow-up. While participants acknowledged the limitation of the physical barriers, they understood that building more structures comes at a cost; therefore, they advocated re-designation of spaces to improve patient flow.
“…the ART pharmacy, and follow up OPD is a separate building, which is a challenge for a woman who has not disclosed their HIV status. Thus, if the pharmacy and follow up of HIV positive mothers are hidden, it respects their privacy and confidentiality, particularly who are not disclosed their status…”M7
Participants also indicated that ethical issues need to be addressed in counseling and health care providers be trained in sensitivity of HIV issues and how they can best support the mothers during these difficult times. HIV officers also stated the unethical conduct of professionals was one of the reasons for mothers’ loss to follow up and other consequence of LTFU.
“…One health professional insulted me using a strong term that related to HIV. Most health professionals are also thought that all the woman who acquire HIV because of their sexual misconducts and consider them as whores…”M23
For shortage of drugs and interruption of supplies, participants suggested that health care providers form a network so that they know where clients can get the services or even have the drugs shipped to areas where they are rather than referring the patients to other centers.
“…When mothers come to take medicine, and we fail to give them, we feel sorrowful, because we understand the challenges they face, particularly if they have not disclosed their status. Thus, I recommend the centre should borrow medicine from nearby centers or call the centers to notify them on the mothers expected to visit and facilitate an appointment for them or make an appointment for other days if the medicine is not available around the communities...”HP21
Participants also advocated for the centers to be proactive and develop a mechanism to trace patients to improve children’s outcomes rather than just labeling them lost to follow-up. Some of the suggested mechanisms include phone-based communication, group-based communication or reaching out to the patient contact person.
“…Most of the health professionals who are working in the PMTCT department are not checked who lost the follow up regularly. If the PMTCT staffs call before a couple of days of appointment to show respect and degree of care, the mothers might visit timely. Also, the professionals or health facilities should consider different tracking mechanism starting phone communication to group communication and then contact person, who may be closed person…” HP7
Psychosocial support was identified as a solution to fight against stigma and discrimination and carelessness of the mothers. Avenues identified include building social networks for support and resilience as well as involving other family members in sexual and reproductive health of the mothers. Social networks identified include support groups such as mother –to- mother association and volunteers visiting mothers in homes to provide both emotional support and assistance to mothers.
“…The mother-to-mother association is significantly important in breaking the negative community perceptions about HIV positive people in different methods. For example, when mothers visit HIV positive mothers frequently, care for the children born to HIV positive mothers, and teach the people who hold negative thought about HIV positive mothers…”M24
“…The social networks and civic associations like mother-to-mother association, and other charity associations have a significant role in returning HIV positive mothers to the community, improving their economy, family and social life….”HP16
Improving the quality of counseling to broader aspects of the woman’s life was also identified as possible interventions for loss to follow-up and prevention of child mortality. Also training health workers to be sensitive to the needs of the women was identified as a form of support that could encourage more women to join the program and keep the ones that have joined the program until the end.
“…the quality of counselling, including eye contact, facial expression, and other body gestures are very important to retain mothers to the end of the program. Such quality among PMCT professionals would have occurred through frequent training…” HP17
“…Most PMTCT professionals who work in health facilities are not trained; the training was given for former staff; Thus, we are working with our basic education; therefore, training should be given periodically…”HP20
Education and awareness
The health and awareness theme focuses on improving the healthcare-seeking behavior of parents to improve treatment adherence and also continued screening of children in the postnatal period to reduce deaths and LTFU. Education and awareness will also open avenues for other family members, particularly spouses, to be involved in maternal and child health.
“…if mothers disclosed their status to their husbands or other family members, it would be good to ensure that education is also provided for the family and husbands because they will remind the mothers about follow-up care when they do not go…” HP2
Empowerment theme came as a response to social determinants such as poverty as a major contributor to LFTU and death. Participants suggested that women should be empowered through civic societies to mitigate the effects of poverty. Most health professionals who work in hospitals and HIV officers stated that Mothers association and other civic societies are essential to prevent mothers and child LTFU.
“…mothers association is very important in which mothers can visit HIV-positive mothers in their homes, arrange financial support and motivate them to complete their follow up and may also provide care for their children during their visit, which encourages mothers to accomplish the follow-up and prevent death...”HP3