The findings of the study are presented below in terms of the participants’ characteristics and the four embedded units of analysis: client factors, community factors, healthcare factors and policy and standards.
A total of 111 people participated in the study, of which 51 (45.9 %) were male and 60 (54.1 %) were female, while 58 (53.3 %) and 53 (47.7 %) were urban and rural residents, respectively. Overall, 23 (20.7 %), 53 (47.6 %), 13 (11.7 %) and 22 (19.8 %) of the participants were in the age group <30 years, 30-39 years, 40-49 years and >49 years, respectively. The mean age was 36.3 years, with 35.8 years for FGDs, 33.9 years for KIIs and 42.7 years for IDIs. In addition, 45 (40.5 %) of participants were HIV positive while 66 (59.5 %) had unknown HIV status. Marital status was available for FGD and II participants of whom 62 (74.8 %) were married, five (6.0 %) were single, eight (9.6 %) were divorced and eight (9.6 %) were widowed. All the participants were affiliated to different Christian denominations.
Awareness and experiences
Awareness of HIV/AIDS treatment increased among PLHIV over the years as a result of observing someone that benefitted from HIV treatment and/or witnessing the death of those who refused to start or failed to adhere to HIV treatment. In addition to knowing one had HIV, these experiences influenced the client’s outlook on life and decisions on when to start and adherence to HIV treatment. PLHIV associated late diagnosis and delayed HIV treatments with poor outcomes even if put on appropriate treatment. Drug side effects were misconceived by some PLHIV and caused them to stop treatment.
Many people died of HIV/AIDS because they did not use the treatment or follow prescriptions. … I have seen people using HIV drugs benefited. … In my case, the disease severed my health because it was diagnosed very late. (FGD 5, 35 year old woman, using ART)
Currently, the drug they are giving … I tell you! … It’s very strong and burns your stomach … It makes you lose all your energy. … That I stopped the drugs. (II 6, 31 year old woman, stopped ART)
New users of HIV treatment often feared the side effects of the drugs and were uncertain about the benefits. This tended to be resolved over time. They reported that the initial experiences with care providers were crucial to clear any confusion and misunderstanding and to respond to clients’ concerns in order to encourage them to adhere to treatment and start living positively.
There are many bad things said about starting HIV drugs … like it can kill the person quickly or worsen the health condition. So, they [PLHIV] come with many confusions, concerns and questions. Health care providers must understand these issues and address appropriately. Without good counseling and care in their first visit, it will affect adherence and positive living. Some people even might quit the drug shortly. (FGD 3, 35 year old woman using ART)
Some PLHIV believed that being HIV positive meant that the virus had depleted their blood to the extent that drawing even a small blood sample for laboratory investigations adversely affected their health. In addition, PLHIV frequently associated HIV drugs with “feeling hungry,” “stomach burning” (heartburn, gastritis or ulcers), “body weakness” and/ or “diarrhea”. Due to these beliefs, some demanded adequate food as a basic requirement to stay in HIV treatment.
I refused to give blood for testing [CD4 cell count] … because I did not want to lose my already depleted blood. (II 8, 35 year old man, stopped ART)
When I took the drugs in empty stomach, it burned me [gastritis, heart burn or ulcer] that followed with diarrhea and body weakness. So, I stopped it [HIV drugs]. (II 7, 38 year old woman stopped ART)
Resources (Food, income and employment)
Employment opportunities and the ability to buy food were associated with the acceptability of HIV care as participants believed that HIV care should be comprehensive and should include food. Both the community and PLHIV believed that HIV positive people should eat “good foods” such as meat, eggs, butter, milk, etc. Unemployment resulted in low income, hindering access to such foods and increasing worries about health and the future. The inability to provide food, clothing and school materials for their children and pay rent caused some PLHIV to abandon HIV treatment. Some PLHIV who stopped ART said that they were depressed and not sure if they would restart ART.
We can’t take the drugs without food. … HIV treatment should be complemented with food … good foods like meat, egg, milk and so on. Without this, HIV care is unacceptable for me. (FGD 2, 40 year old man, stopped ART)
I’m unemployed. I have children to take care of. I have to provide them with food and cloth, and pay my house rental. If I don’t pay on time, they [house owners] will expel me. I have too much to bear at the moment, it is very depressive. I just feel my days are over. So, I stopped ART. (II 6, 31 year old woman, stopped ART)
HIV status disclosure
PLHIV who did not disclose their HIV status to anybody faced challenges in adhering to HIV treatment. For instance, efforts to hide their HIV status from family members (for example, their mother) led to treatment being stopped. The participants also noted that some PLHIV had not disclosed their status to their spouses and that many women and children were thus not accessing HIV care. Care providers and PLHIV reported that many women and children died without knowing they had HIV and only the lucky ones discovered it years after their husbands’ death. Stigma and discrimination and the desire to preserve relationships were the reported causes of failure or unwillingness to disclose one’s HIV status and/or non-use of HIV care.
I stopped HIV drugs due to the inconvenience I am facing, my mother is sick and I am staying with her to take care of her. I haven’t disclosed my HIV status. I have stopped taking HIV drugs because I don’t want her [my mother] to discover my HIV status. (II 12, 27 year old woman, stopped ART)
There are some men who keep their status hidden from their wives although they are using HIV drugs. … As a result, many women and children died without knowing they had HIV. They had no chance of using HIV treatment. Some lucky women got tested years after their husbands’ death and started HIV treatment. (FGD 9, 25 year old woman, general community member
Community acceptance and responses
Both community members and PLHIV believed that increased awareness of HIV/AIDS and the availability of treatment contributed to reduced stigma and discrimination. In effect, PLHIV were integrated in all social activities and were also provided with care and support when they needed it. However, some stigma still remained such as refusing to let houses to those that are HIV positive, stigmatizing the children of PLHIV and insults and name calling that caused people to stop treatment.
Now, everybody knows about HIV … We have seen the benefits of HIV drugs and their impacts. … We are supporting them whenever they needed financial or food assistance. (FGD10, 31 year old man, general community member)
Stigma and discrimination are not over yet. There are some people who say ‘You are HIV,’ ‘an HIV man or woman,’ ‘your days are numbered,’ ‘you are dying,’ ‘you will die soon,’ ‘you are spoiled’ and many other things. Some people stigmatize our children. Due to this, some people stopped HIV treatment. (KII15, head of woreda health office)
It was reported that the care and support (financial, food or material) available to PLHIV were feeble, inadequate and unorganized. Some churches only provided food and/or money during some national holidays. In some woredas, the health offices supported PLHIV in the form of seed money to establish small enterprises although such support was said to be insufficient with limited reach. PLHIV associations provided food, money and emotional support to their members during times of illness and a shortage of food. The associations made home visits and offered counseling services, and also assisted health facilities to identify and trace those lost to follow up.
We are not getting support from the government as well as from the community. The churches give us some money and food during national holidays. We need … seed money for small enterprises and food support to survive. (FGD3, 31 year old woman, using ART)
In the community, there were traditional healing services in the form of prayers, holy water and herbal medicine. Many PLHIV were using these services with varying beliefs and trust put in them, and the impact on HIV treatment and care varied accordingly. Some PLHIV used traditional healing simultaneously with ART. Others used traditional healing with inconsistent use of ART.
For instance, I pray and fast and also simultaneously use ART. I take it correctly. (FGD3, 28 year old woman, using ART)
As a religious practice, I use holy water every day. … Sometimes I forgot to take the drugs after the holy water. … I didn’t take the drugs as prescribed but I used arbitrarily when it was convenient to me. Later on, I stopped HIV treatment due to lack of hope in life. (II11, 29 year old man, stopped ART)
Finally, some PLHIV fully relied on traditional healing services and stopped ART. In the IDIs with herbalists, they said they did not provide any treatment for HIV or they did not have a cure. However, PLHIV said they were asked by herbalists to pay money for a cure for HIV. Some said that they knew of people who had stopped HIV treatment and/ or died due to herbal medicine. Claims of being healed were associated with traditional healing and were the cause of stopping ART.
There was a woman who died after stopping HIV treatment. She was told healed by a prayer in a church service and she stopped ART. There are also other people who stop HIV treatment due to herbal medicine. (FGD5, 35 year old woman, using ART)
I don’t provide treatment for HIV. When I provide care, I don’t know who is HIV positive or not, or they don’t disclose their HIV status to me. … When I suspect they have HIV, I tell them to get tested for it. (II3, 35 year old woman, herbalist)
There was an herbalist who asked me to pay 3000ETB [~US$150] to get HIV cure. I didn’t trust him because I knew there was no cure for HIV. (FGD3, 35 year old woman, using ART)
Interaction with care providers
Clients’ experiences of their interactions with care providers affected their perceptions of the quality of care that in turn had implications for acceptability of care. The reported acceptable interactions were a welcoming reception, follow up on how they were doing, answering questions, attending and responding to their concerns and empathy. The reported “unacceptable” or “disappointing” interactions were when care providers disrespected patients, did not answer questions and had an unwelcoming look on their faces.
The health center as well as care providers are very good. They ask us how we are doing and if we have any concerns. They answer our questions. … We are happy with the care and access to care. Usually, our expectations are met. (FGD1, 30 year old woman, using ART)
Unfortunately, the care provider was so disrespectful. She didn’t answer my questions appropriately and she shouted at me. Very frustrating! …That is unacceptable! So, I went back home to come again when the main care provider returned. (FGD2, 40 year old man, using ART)
Some PLHIV had unpleasant experiences with “new care providers” assigned to HIV care units or “filling in” when the normal care provider was absent. Explaining their medical history and their concerns to somebody who would not be there the following month was a “disappointing experience.” In addition, PLHIV were concerned about new workers changing treatment plans without ‘good’ reason. Some PLHIV who had “unpleasant interaction” with care providers stopped ART. In addition, a “lack of empathy” from care providers impacted on satisfaction with services and adherence to treatment.
Every time we visit the unit, we find a new care providers. …Every time we have to explain everything from the beginning to a new care provider which is not acceptable. …. Besides, they quickly change the drugs that affects our health. (FGD6, 50 year old man using ART)
The health care at the health center used to be good before those good care providers had left. The ones providing care [ART] at the health center are disrespectful, very arrogant and not caring. I was so disappointed with their behavior and stopped HIV treatment. (II10, 55 year old woman, stopped ART)
When PLHIV felt that the care providers stigmatized and/ or discriminated against them, for instance skipped physical examinations or made unnecessary referrals to other health facilities, they became “disturbed” and “hopeless”.
They [care providers] do not want to touch us or perform physical examinations. We think they are stigmatizing us. …They order lab examination and prescribe based on the lab findings. It’s like a machine operating on us. (FGD5, 55 year old woman, using ART)
Quality of care
Some PLHIV who were accessing HIV care believed that the health care providers followed standard procedures and that the care was “good” and “acceptable.” They believed that they were obtaining appropriate treatment for their health conditions. However, others perceived “poor quality of care” due to a lack of access to a dedicated physician and/ or specialist medical attendant.
We don’t have physicians working in the unit [HIV unit]. Staffs are assigned on rotational basis which is not a good practice for PLHIV. We also don’t have specialists to consult when we have severe medical problems. (FGD6, 42 year old man, using ART)
On the other hand, health care providers believed they provided good or quality care because they followed the national and WHO HIV/AIDS service delivery standards. However, they experienced malpractices such as wrong medicine dispensed by new staff. PLHIV also reported that in some cases, HIV care was provided by staff without on-the-job training on HIV treatment. Poor management of the side-effects of HIV drugs and the lack of free treatment for opportunistic infections (OIs) also cased disappointment and unacceptability of HIV care. In addition, a shortage of resources such as laboratories and examination tools and drugs challenged the provision of standard services.
In the health center, I witnessed a wrong drug [not prescribed] mistakenly dispensed by a new pharmacy technician which resulted in undesired side effects on clients. (KII7, 25 year old, care provider)
There is a care provider who is not trained on ART/HIV treatment providing care. He sometimes messes up the treatment regimens. … So, the quality of care is not good. (KII17, 30 year old, adherence supporter)
I had itching and eruptions on my skin and I consulted the care provider [at the hospital] and he replied ‘Except for the ART drugs, you must pay for all other medications.’ … They don’t care when we have side effects. … The service is incomplete and is not acceptable by any means. I stopped ART. (II7, 38 year old female, stopped ART)
HIV care providers, adherence support workers and case managers said that they followed up on clients via telephone and home visits and during health facility visits. For PLHIV, follow up was another area associated with the acceptability of HIV care in health facilities. Follow up was perceived as “good” when PLHIV were asked how they were doing and adherence to treatment. A lack of follow up resulted in “disappointing” experiences with services. Home visits by adherence supporters were welcomed by PLHIV although this was often not available and was not practiced as promised. PLHIV appreciated the efforts of PLHIV associations to trace lost to follow up and to assist them in dealing with their life problems.
So far, the health services have been good. … If we don’t appear on the appointment dates, they make calls and follow up. They are doing a good job. (FGD3, 30 year woman, using ART)
Previously, they used to ask how we were taking the drugs or if we had encountered problems with the drugs. Now, they prescribe drugs and that’s all! They don’t make follow ups. (FGD5, 36 year old woman, using ART)
Laboratory services and logistics
In addition to concerns about providing “large” blood sample for CD4 cell counts, PLHIV expressed their disappointment with delays in laboratory results because they were eager to know how they were doing. Logistics and supplies challenges were reported by PLHIV, care providers and health administrators. For instance, some health facilities had run short of HIV drugs at least once in the 12 months prior to the time of the study. Drug shortages were managed differently by care providers and health facilities; some health centers borrowed one or more drug items from other facilities to cover the deficit while others did not do so.
They take blood sample for CD4 count … But, they are not telling us the results, they take ages to do so. That is not acceptable. … For us, knowing our CD4 count is very important. (FGD2, 25 year old man, using ART)
Sometimes, we fall short of ART drugs. … When it happens, we borrow from other health facilities in order that our clients do not interrupt the drugs. (KII6, 26 year old female, care provider)
In the latter health facilities, PLHIV were forced to interrupt treatment for a couple of weeks. Pediatric ART drugs were still not available or were insufficient, challenging parents and health facilities. While resources to treat OIs were usually available in health centers, hospitals faced challenges due to insufficient supplies and large volumes of clients; this was the main cause of dissatisfaction with HATCS in hospitals. In both health centers and hospitals, laboratory services were affected by a shortage of reagents and chemicals that caused delays in results.
I visited the health center for drug refill [ART] but they said they didn’t have the drugs. After two three attempts, I was disappointed and stopped looking for it. (II11, 28 year old man, heal of health office)
We experience delays in logistics supply for HIV treatment such as for the treatment of opportunistic infections. The problem is huge in hospitals because they serve many clients. This is not a case in health centers. (KII19, 37 year old man, HIV/AIDS program coordinator)
Amenities of care
Some health facilities had space problems and poor room arrangements which failed to maintain privacy and confidentiality. For instance in one health center, services providers with different capacities such as receptionist, counselors and HIV care provider all sat in the same narrow room.
When you visit the health center, you have many things you want to consult with the care provider. In the presence of three or four people in a room, it’s difficult to tell our concerns and secrets to the care provider. (FGD6, 46 years old man, using ART)
Three health centers lacked space to store logistics for HATCS. One health center had poor infrastructure (blocks) which were difficult to keep clean. Some health facilities also lacked running water in HIV care units as well as an adequate number of toilets. In almost all health facilities, toilets lacked cleanliness and running water and were sometimes out of order or closed. A shortage of chairs was observed in the hospital waiting area and PLHIV queued for long time, especially in the morning sessions. Except for the hospital, all the health facilities lacked access for people with disabilities.
Operational hours, staffing and administration
Operational hours were cited as an important component that affected the acceptability of care and satisfaction with services. During normal working hours, i.e., 8:30 am – 5:30 pm on weekdays, PLHIV faced few challenges in obtaining care except when care providers were absent. However, many of the health centers did not provide ART or free treatment of OIs at night and on weekends, limiting access to care. Health care providers at some health centers acknowledged the unavailability of after hours’ care that challenged PLHIV’s access to emergency care and clients described this as “disappointing” and “unacceptable”.
The services are good except that we can’t access care in the weekends and at night times. During these times, we have to pay for drugs and other services. (FGD6, 37 year old man, using ART)
Woreda health offices and some health centers noted that they lacked sufficient staff to efficiently and effectively perform routine administrative and clinical functions. High staff turnover was noted as a major challenge that is aggravated by inadequate incentives and staff retention strategies. Adding to the problem, support staff such as data clerks, case managers and adherence support workers was not paid their salaries on time. Woreda health offices staff said that they faced difficulties due to a lack of financial resources to mobilize the community to test for HIV and to provide care and support for needy PLHIV. They added that some woreda leaders have little regard for HIV prevention and control programs.
I am the only person trained on ART and working in the unit. When I had to take time-off … there is no one who can work in this unit. Besides, trained staffs are frequently leaving the health facility. (KII2, 26 year old man, HIV/AIDS program coordinator)
We do not have budget even for routine tasks. … We don’t have budget for community mobilization and care and support for needy people. … There is an attitude problem with the leaders. (KII14, 38 year old man, HIV/AIDS program coordinator)
Policies and standards
Free access to care/Financing
Noting their impoverished living conditions and lack of food, PLHIV demanded free access to all medical care, not just ART drugs. Some said that when there are shortages of drugs to treat OIs, they struggled to pay for these drugs at ‘budget’ dispensaries (pay per dispensed drug) in the health facilities and at private drug stores. PLHIV were also asked to pay for laboratory services and inpatient care in hospitals regardless of their HIV status. However, these services were provided free of charge in the health centers. Hospital clients questioned why the procedures and financing policies were different at the two levels of public health care. Based on the national health policy, payment can be waived on condition the clients present a certificate from their respective woreda administration offices. Nevertheless, the shortage of drugs in public health facilities meant that they had no choice but to buy from private drug stores. When more than one family member was infected with HIV, medical expenses rose.
Health centers are providing all health care free of charge. However, the care in the hospital is mostly payable. … We cannot afford buying them. Should we be punished for being poor? (FGD2, 65 year old man, using ART)
Now, we have to pay for everything at the hospital including inpatient care. … Families with many people with HIV are severely affected by this. (FGD3, 30 year old woman, using ART)
Based on the experiences and expressed inability to afford to pay for medical care, PLHIV believed that “good services” such as good interaction with care providers and service setups were not sufficient for the health care to be acceptable.
Focus, implementation guidelines and service standards
According to health care providers and administrators, many health facilities had been constructed in the past five years in line with the country’s development plans and emphasis on expanding access to health care. Although the number of health facilities providing HATCS had increased, ART care was not available in many health centers. PLHIVs from remote areas that travelled 90 km or more, some of it on foot due to transport shortages and financial difficulties had limited access to HIV treatment.
The country’s health policy is one of the best and delivering well. Accordingly, poor people are exempted. Due to expanding of health infrastructure, access to HIV care has increased. HIV treatment is provided free of charge although we had shortages of OIs drugs. Service delivery manuals and standards are very helpful and assist in quality service delivery. (KII1, 32 year old man, care provider)
Access to HATCS is very limited in our context. There are people coming from villages located four hours from here, often on foot, yet they [PLHIV] have to travel 90 km from here to get ART drugs. (KII11, 28 year old man, head of health office)
PLHIV with financial difficulties were stressed due to fears of stopping HIV treatment. According to care providers and woreda officials, it was high time that ART centers were opened in those hard to reach areas. However, their efforts were not successful because of the large number of HIV positive people required and little regard for the remoteness of the woredas. PLHIV were thankful and happy about the national HIV/AIDS policy, acknowledging access to free ART and treatment of OIs.
I come from very far place. I spend a lot from my limited income. …I have been struggling to survive. I become stressed when I fail to afford travel and food expenses. I don’t know if I can continue using HIV treatment unless the situations improve. (FGD4, 32 year old man, using ART)
Regarding opening new ART sites, priority has been given to woredas with larger number of HIV positive people. Due to this policy [directive], it has not been possible to open ART sites in distant places. (KII19, 37 year old man, HIV/AIDS program coordinator)
The HIV policy of our country is very good. It saved our lives. We thank the government for providing free ART and other services. (FGD2, 45 year old man, using ART)