Study approach
This qualitative study with the phenomenological design was conducted as part of the larger discrete choice experiment study. Data were collected between July and September 2021.
Study setting
The study was conducted in Bahir Dar special, Awi, West Gojjam, and East Gojjam Zones of Amhara National Regional State located in the northern part of Ethiopia. Currently, 343 health facilities are providing HIV treatment service to PLHIV in the region of which 41 of them implement four DSD models (appointment spacing, fast track ART refill, health extension, and peer-led community models). Similarly, there are 15 public health facilities (2 comprehensive specialized hospitals, 1 general hospital, 3 primary hospitals, and 9 health centers) implementing these models in the above-mentioned four Zones.
The study was conducted at the HIV clinics of four hospitals (Felegehiwot and Debre Markos comprehensive specialized hospitals, Finoteselam general hospital, and Dangila primary hospital) and two health centers (Debre Markos and Bichena). According to Ethiopia’s health service structure of a three-tier system, the tertiary level of health care specialized hospitals serve 3.5 to 5.0 million people; the secondary level of care general hospitals serve 1 to 1.5 million people; primary level of care hospitals serve 60,000-10,000 people and health centers serve 15,000-25000 for rural and up to 40,000 for urban people [15].
Sampling and recruitment
A purposive selection of stable and 18 years old and above HIV positive individuals using HIV treatment service in the public health facilities of East Gojjam, West Gojjam, Awi, and Bahir Dar special zones was done. We recruited participants from different facilities in the sample based on a load of patients taking ART and facility type (tertiary, general and primary hospitals, and health centers).
In-depth interviews with adults on ART who were virally suppressed and eligible for DSD [2] but not currently enrolled in one of the differentiated ART models were conducted. The facility staff members who were already aware of the study were requested to support the recruitment of patients from among those that were visiting for a regularly-scheduled ART appointment declared to be eligible to DSD models on the date of interview. The sample size was determined based on theoretical saturation, and 15 participants ( Felegehiwot hospital:5, Debre Markos hospital:3, Finoteselam hospital:2, Bichena hospital:1, Debre Markos health center:2, and Bichena health center:2) were involved.
Data collection
A semi-structured interview guide was developed and used for data collection. The guide consists of questions about the patients’ experiences with current ART service and preferences towards features of ART service provision (Additional file 1). Interviews were conducted by the principal investigator (YAB) in the Amharic language. The interview guide was pre-tested among purposively selected participants at Debre Markos hospital before actual data collection. Data were collected from participants in a private room in the health facilities. The interviews were audio-recorded and lasted between 30 minutes and 105 minutes. Transcription of audio files and initial analyses were carried out in parallel with the data collection allowing the study principal investigator to get an insight into theoretical saturation. The interviewer wrote field notes during and after the interviews.
Data analysis
Participants’ responses were transcribed verbatim. Then, the translated transcripts were imported into ATLAS. ti version 9 software for coding and were analyzed using a thematic analysis approach. Our analysis followed a hybrid approach of inductive and deductive coding. Initial deductive coding was based on the fixed topics from the literature review [14], study objectives, and interview guide followed by an inductive, data-driven generation of new codes. Familiarization with the data was done by reading and rereading the transcripts followed by developing the codebook. Memos were written during the coding process to capture impressions and to facilitate the identification of themes. Our study was reported according to the consolidated criteria for reporting qualitative studies[16] shown in Additional file 2.
Trustworthiness of the study
Trustworthiness in qualitative research is achieved by enhancing credibility, dependability, confirmability, and transferability[17]. The credibility of the study was enhanced by spending more time with participants in individual interviews until data saturation was reached. There was also iterative questioning (the use of probes to elicit detailed data and returning to matters previously rose by an informant and extracted related data through rephrased questions) to enhance credibility. Dependability was enhanced by maintaining an audit trail through keeping all copies of notes, transcribed and recorded data for future use, including supplying participants with researchers’ personal and academic information for contact or explanation at any time.
Confirmability was enhanced by conducting a pilot study, which served as a pre-test to the interview schedule, and interviewing skills from 3 participants at Debre Markos hospital helped to refine the study methods. The results of the pilot were not a part of the report presented in the final study. Transferability was enhanced using a non-probability purposive sampling method to collect data from participants. We also supported transferability via rich descriptions and verbatim quotations from the transcripts.
Ethical approval
This study received ethical approval from the Institutional Review Board of the University of Gondar (approval number V/P/RCS/05/762/2021). A formal letter obtained from Amhara Public Health Institute was given to each health facility to get permission and cooperation. After briefing the purpose of the study, written informed consent was taken from each participant before the data collection.
Findings
Participant characteristics
A total of 15 PLHIV who use ART were interviewed. The mean age of participants was 38.8 years (SD=3.59). The mean duration of ART intake was 10.1 years (SD=1.43). About two-thirds were female, nearly a quarter were married, 46.7% had not attended education and 40% attended secondary and higher education. Moreover, about two-thirds were employed (Table 1).
Key qualitative findings are described below and organized according to the two major themes associated with the patients’ experiences with ART service and preferences for ART service delivery characteristics expressed across all participants. An overview of patients’ experiences with ART service and their preferences for ART service provision characteristics identified from the interview are presented in Tables 2 and 3 respectively. Illustrative comments from interviewed participants are included as appropriate.
Participant experiences with antiretroviral therapy service
Participants in this study had reported both positive and negative experiences when they received care or treatment from the ART clinics.Stigma, time (waiting, facility opening, travel, frequency of health facility visit and time convenience with school and work), drug and provider availability, costs per clinic visit, and provider-patient interaction were the themes that emerged regarding the participants’ experiences with ART and are highlighted in the following section as follows:
Stigma
Perceived/anticipated stigma following HIV status disclosure was quite prevalent among all PLHIV in the study. Maintaining secrecy or limiting disclosure of HIV status appeared to be a protective strategy among many participants.
“I take my drug in a hiding place when my child sleeps since she didn’t know about my status. I always come from a remote area which takes 1 hour by bus since there is still a stigma in our community. My social life and work could be affected if I get service in my locality”. (33 years old female)
“No one knows about my HIV status except my wife hence I didn’t experience stigma from others”. (56 years old male)
Some participants reported experiences of stigma from family, community, and healthcare settings.
“My husband’s family members were treating me negatively since they considered me as doing some evil activity on him. They advised him to stop the HIV drug and rather go to a traditional healer”. (57 years old female)
“I have an experience of discrimination by a woman with a rental dorm. She refused to accept me to rent in her house as a result of knowing my HIV status”. (27 years old female)
“I have found a discriminatory action by the gatekeepers. They [gatekeepers] openly asked me the reason for the entry to the hospital in front of many people requesting to enter the hospital during COVID-19 movement restriction”. (40 years old male)
However, no participant mentioned an experience of stigma by their healthcare providers.
Time
The participants in this study have mentioned their positive and negative experiences about waiting time, facility opening, travel time, frequency of health facility visits, and time convenience with school and work.
Waiting time: Many participants reported large crowds of clients at the ART clinics in the past. The large crowds in their opinion resulted in long waiting hours before consultations or drug refills.
‘‘I wait 5-6 hours in this hospital to get the ART service. The providers may even postpone our turn to the afternoon time’’. (40 years old female)
“It takes me 5 minutes of travel on foot. The main problem is the long waiting time in the health center. It takes 1- 2 hours to wait here depending on the number of clients being served. We are getting our cards from the main card room with other HIV-negative individuals creating a big concern for us”. (38 years old female)
Some participants however reported waiting less time at a health facility.
“We do not wait for more here. There is a special service room in this hospital for ART service. There are many providers in each room of ART service”. (57 years old female)
Facility operation time: Clinic opening and closing hours were frequently mentioned as frustrating patients’ access to care.
‘‘It could be okay to return to work if we get the service before 2:30 in the morning. But the providers are losing our time here by starting the service at 3:00 instead of the legal 2:30’’. (40 years old male)
‘‘I have faced a challenge to get my drugs when I came here after 10:00 in the afternoon despite the work time being until 11:30 from Monday to Friday’’. (40 years old male)
One participant, however, said that the providers start working early in the hospital.
‘‘The providers enter the hospital early and they serve us at a speed’’. (32 years old female)
Travel time: Clients reported varied experience in the duration of travel time from home to a facility. Many participants highlighted less travel time from home to a health facility.
“It takes me about 30 minutes to travel from home to this facility on foot”. (22 years old male)
Some participants reported more travel time from home to a facility.
“I come from a remote area which takes 1 hour by bus due to continued stigma in our community”. (33 years old female)
Frequency of facility visit: Clients mentioned their experience of more frequency of health facility visit schedules in the past.
“I was visiting the facility every month for 7 years”. (22 years old male)
Other participants however reported less frequent visits.
“It is not difficult to come to this hospital since I return here every 3 months schedule”. (33 years old female)
Time convenience: Some participants reported time inconvenience with school and work.
“The laboratory test clashes with my education schedule since the provider always tell me to come in the morning where there may be a class in the school”. (22 years old female)
‘‘I am still frustrated with disclosing my status to others. I have tried to request one of the providers here and she sent me my drugs via postal service since I was not able to come on the appointment date due to a clash with my work’’. (33 years old female)
Drug and provider availability
No respondents in this study reported experiencing a complete ARV drug stock-out at the health facilities.
‘‘I am satisfied with the drug supply in this hospital’’. (40 years old female)
Most participants reported a shortage of health care providers in the ART clinics.
‘‘There should be additional providers employed in the ART room since the number of clients is many hence to avoid waiting for a long time here’’. (22 years old female)
On the other hand, one participant mentioned the availability of adequate providers in the ART rooms of the hospital.
‘‘There are many providers in each room of ART service in the hospital’’. (57 years old female)
Costs per clinic visit
The participants in this study mentioned that only ARV medication and a few laboratory investigations were free. The participants highlighted that they cover the costs of transportation, drugs for opportunistic infections, and additional costs including food.
‘‘Since I am near the hospital, I do not pay much money to come here. The HIV drug is free. If there are no drugs in the hospital other than HIV drugs, we pay for that’’. (25 years old female)
Some participants expressed concern about the expensive cost of transportation and accommodation when coming from remote areas due to fear of stigma and discrimination in the community.
‘‘I come from a remote area which takes 1 hour by bus with 60 Birr ($ 1.5) cost. Since there is still stigma in our community, I am forced to come here for getting ART service. I may take paying fewer costs for a taxi if I attended in my locality’’. (33 years old female)
‘‘I pay for the transport and food costs when I come here. But, I did not pay for drugs at this hospital since I have no opportunistic infections’’. (40 years old male)
Participants reported that they miss work when seeking care.
‘‘I have discussed with my providers to give me drugs with additional stock at least for 10 days in addition to the usual prescription to avoid work inconvenience’’. (33 years old female)
Provider–patient interaction
Encouragement: Most participants mentioned the good attitudes and behaviors of healthcare workers towards them, which they said have encouraged them to continue accessing HIV care and treatment.
“The providers have patience and provide service in a good manner. They counsel us when we miss care. They do not anger on us. They serve us in love”. (22 years old male)
“The providers are kind enough to treat us. Some providers have HIV and help us properly. They [providers with HIV] counsel us in a good manner. It is like knowing about the hungry status of someone by remembering their own hungry experience. I always want to contact them [providers with HIV]”. (33 years old female)
Discouragement: Some patients reported encountering HCWs who were disrespectful, non-caring, and providing inadequate counseling.
‘‘The previous workers in the ART room were very good to follow us closely and get us treated if we become sick. But now, the providers are not careful enough to treat us properly. They [current providers] did not care while I slept on the bench in the waiting room here in the past’’. (27 years old female)
In terms of counseling, the providers at this hospital are relatively less attentive to us compared to the health center although they (providers) ask about our progress and proper drug-taking’’. (40 years old female)
Participant preferences for antiretroviral therapy service characteristics
Fifteen attributes (themes) with respective attribute levels were identified in the thematic analysis. Attributes and attribute levels were identified from the transcripts and prominent participants’ quotes were directly extracted to illustrate each attribute and attribute level (Table 3). The identified attributes are highlighted in the following section.
Buddy system
The majority of participants preferred having physical contact with the health facility over having someone assisting in collecting their pills. The reasons cited were the need for health status check, weight check, counseling, checking the effectiveness of taking the drug, and lack of trust in someone collecting drugs.
‘‘It is beneficial if I come here myself, asked about my health status and get weight check and counseling from the providers about drug-taking, feeding and avoiding drinking alcohol’’. (57 years old female)
‘‘I prefer to come physically here to be checked about my health status and whether the drug is working or not. It should not be thought of simply taking drugs from here’’. (25 years old female)
‘‘I prefer to take drugs myself since I will not be happy if another person brings drugs for me that may not be trusted like me’’. (40 years old male)
There were however some participants who preferred someone to take drugs for them from the facilityon their behalf in case of time inconvenience on date of appointment, bedridden condition, and engage in their own work activities on the facility visit days.
‘‘I prefer having the other person to assist me in drug-taking since there may be some time inconvenience for me to come here’’. (33 years old female)
‘‘It would be better to have other persons who assist in case of bedridden or paralyzed cases’’. (72 years old male)
Individualized or group ART refill service
Themajority of the participants have preferred individualized ART refill service to group-based service due to a need for maintaining privacy and confidentiality, avoiding clashing with other group members, weight check-ups, and fear of drug change and getting appropriate service.
‘‘I prefer the individualized service to avoid clashing with other group members regarding the scheduled time to meet’’. (72 years old male)
‘‘Wow! I prefer individualized service since there may be a change of drugs or no opportunity to have weight measured’’. (27 years old female)
‘‘I prefer the individual-based service since there may not be appropriate service in a group-based approach’’. (40 years old female)
‘‘I prefer the individual-based service to avoid disclosing my status when I form groups and take drugs together with the other clients’’. (40 years old male)
Some participants on the other hand chose the group form of ART service for reasons of experience sharing, strengthening social relationships, and using the time for work.
‘‘I prefer the group-based service since we have an opportunity of sharing ideas’’. (22 years old male)
‘‘I prefer the group-based service since it helps us to support one another by strengthening our social interactions. It also saves our time to come here individually and use our time for our works by taking drugs in the village’’. (40 years old female)
ART packaging and labeling of drug package
Nearly all participants indicated that they would prefer a change of drug package because the box and bottle are large and easily identifiable by others.
‘‘I also expect that the drug package should be changed since the current bottle-based package created discrimination by others as they could easily identify it. The bottle should be changed so that the container can handle many drugs and even we can put it in our pocket to avoid direct advertising act of the current package. (33 years old female)
Regarding the labeling of drug packages, the majority of participants preferred the medicine labels must not be clear to avoid disclosure of HIV status.
‘‘I think there should not be the labeling of the drug package to avoid being readable by other people than me like my child. She may search via Google and know about her status’’. (33 years old female)
Some preferred however the medicine labels must be clear for easy identification by clients.
‘‘I don’t care about the labeling of drug package. There may be some others who may discriminate us [clients with HIV on ART] when they [others] see the package and read the labeling of ARV drugs on the boxes’’. (38 years old female)
Drug formulation and administration
There was heterogeneity of participants’ preferences for the aspects of drug formulation and administration. Some participants preferred the ARV drug formulation with additives and/protein.
‘‘I would be happy if there is a curable drug for us or drugs with fewer side effects or some additives in the drug that boosts the client’s immunity like vitamins’’. (33 years old female)
‘‘I expect there is a drug that builds our body like proteins in the drug so that you will be fat and similar to other HIV naïve people’’. (40 years old male)
Some participants preferred the effective or curable drug formulation.
‘‘If possible I prefer if there is a permanent cure for HIV. I would stop visiting this hospital if there is a cure for HIV’’. (38 years old male)
Some participants preferred an injectable form of ARV drugs.
‘‘It could be better if there is a vaccination like for the other diseases or an injection that could be used at least for one year’’. (25 years old female)
ART room labeling
The majority of participants preferred the clear labeling of the ART room to help them in easy identifying of service delivery room.
‘‘I prefer the clear labeling of the ART room to help me in identifying the service delivery room’’. (72 years old male)
Some of the participants preferred the non- labeling of the ART room to avoid notifying them of HIV status.
‘‘I prefer the non-posting of the room to avoid discrimination by others while I get into this service room’’. (22 years old male)
Distance from residence to a clinic
Most of the participants preferred a near distance from their homes to the health facilities.
‘‘I prefer the clients get the service in a near place. It reduces time, costs for transportation and could help to engage in other work activities’’. (38 years old male)
Some however preferred a far distance from home to health facility due to the concerns of privacy and confidentiality.
‘‘It is my interest to come from a remote place since there is still a stigma in our community while getting service in my locality’’. (33 years old female)
Frequency of receiving ART refills
The participants of this study have varied preferences for the frequency of receiving ART refills. The majority of them preferred having a facility visit every 6 months for ART refills.
‘‘I prefer to come every 6 months per year. But we can come here if we become sick in between the appointment dates’’. (38 years old female)
Some participants chose to attend the health facilities every 3 months.
‘‘I prefer to come every three months here. It could help me to be checked about my health status regularly. If I take the drugs every 6 months or yearly, I may be sick with an opportunistic infection and my viral load could be increased due to the long time to check my status by the providers’’. (57 years old female)
Some of the participants preferred yearly visit for ART refills.
‘‘I prefer to come once per year if I am healthy. It avoids transport costs and losing our daily works there at our locality. I may come at any time here if I have illness in between’’. (32 years old female)
Location of ART service
The majority of the participants preferred a facility-based ART service over the community-based service including home delivery. The common reasons mentioned were concern on confidentiality, getting health investigation, getting timely and appropriate service.
‘‘I prefer the facility-based service since there may be a problem that will occur to give service at the community level by the current level of understanding. Providers may break confidentiality to let know others know about my status. ’’. (33 years old female)
‘‘I prefer to get the service by coming to the hospital since I could get investigations done if I feel sick’’. (22 years old female)
‘‘I prefer the facility-based ART service since we could get our providers in time and get appropriate service here. I have a concern there in the community that the providers may not deliver service like the providers in the facility. I may not be at home on the appointment date or I may be not aware of the exact appointment date there and I may create a problem for my providers in this case’’. (72 years old male)
Some participants chose the community-based ART service due to reasons of time-saving, clients knowing each other, and avoiding long queues at a health facility.
‘‘I prefer the community-based service since it [community-based service] saves time and lets clients know each other’’. (57 years old female)
‘‘I would be happy if the service is given at the community level since it avoids a long queue at this hospital and waiting time’’. (40 years old female)
Preferences on involvement in treatment decision-making
Some participants preferred the provider's entire treatment decision on their behalf.
‘‘I prefer to select the model of my choice since I have a reason to choose from alternatives depending on my context. The provider should not decide for me’’. (72 years old male)
Some participants preferred the provider’s entire treatment decision on behalf of them.
‘‘I couldn’t decide my model of choice. The provider should select the appropriate option since he knows the benefits and harms of this approach. The clients shouldn’t select the options for them rather the providers should select them’’. (40 years old male)
Some other participants attached more importance to reaching a consensus and having a shared responsibility in decision-making.
‘‘I prefer a joint decision to select the model. There could be sharing of each idea by the clients and the providers. There should be an agreement between the two entities. There may be damage if one of the two simply selects the model’’. (25 years old female)
The person providing ART refills
Most of the study participants preferred receiving the ART refills by the healthcare workers at the health facility due to their knowledge, training, and concern on confidentiality.
‘‘I prefer the healthcare workers since they have their training. They [health care workers] can give the drugs by knowing the benefits and the harms. But in the case of the HEWs or peer leaders, they [HEWs or peer leaders] lacked the appropriate knowledge and even they may give the drugs by exchanging our drugs. I never trust them in this regard’’. (27 years old female)
‘‘I prefer the healthcare workers since they are trained to identify and manage the problems that I may have by critically evaluating my health status. However, the peer leaders are similar to me in terms of knowledge and couldn’t provide drugs for me properly’’. (38 years old male)
‘‘I prefer the healthcare workers to deliver the ART service. I don’t accept the peer leaders distributing our drugs since there is discrimination by the local community perceiving us having a meeting of HIV-positive people in the community’’. (40 years old female)
One participant chose to get the ART refill by the peers for sake of being understood well.
‘‘I prefer the peer leaders to bring us our drugs since they know everything and they have experience of drug-taking. They [peer leaders] give more empathy to us compared to health extension and health care workers. Others [health extension and health care workers] couldn’t appreciate the context despite they have been trained on the disease and the drug and give the service by reading on drug’’. (40 years old female)
One participant preferred the HEWs for concern of maintaining privacy.
‘‘I prefer the health extension worker to give me drugs since I can go to her [health extension worker] without notifying my status’’. (40 years old male)
Provider’s attitude
All participants in this study put a strong preference for having nice over rude providers.They valued more on the empathy and positive attitude of their providers.
‘‘My choice depends on the provider you get every visit. I had one female provider who treats me with a bright face and want others [providers] to treat me like her’’. (38 years old male)
The spatial arrangement of the ART room
Most participants preferred a separated ART clinic from main health facility buildings for sake of privacy.
‘‘I prefer the separate building of the ART room to avoid the associated stigma if the ART room is available with other service rooms of the health facility’’. (72 years old male)
Some participants however prefer the shared space of services in the main health facility buildings for reasons of hiding HIV status and considering HIV service similar to other services.
‘‘I prefer the service should be given with another service in the same room to avoid HIV status. The providers should treat them accordingly based on the clients’ situation instead of a separate service for ART’’. (33 years old female)
‘‘I would be okay if the service is connected with other services. It is similar to other services in the hospital. I have raised a question for myself why the service room is isolated from other service delivery rooms in the same facility’’. (22 years old female)
Time of the health facility operation
The majority of participants in this study preferred getting ART service in the workweek (Monday to Friday) in the usual hours (2:30-6:30 morning and 7:30-11:30 afternoon).
‘‘I prefer the usual working days and hours since it is enough to get the service at that time’’. (38 years old female)
Some preferred to get the service in the work week with weekend days.
‘‘I prefer the extra facility opening time especially Saturday and Sunday in addition to the usual working days and hours. I am not comfortable with the facility openings before 2:30 in the morning and after 11:30 in the afternoon since we do not come to this hospital at such time’’. (40 years old female)
Others chose to obtain the service 24 hours of the day at any time of the week.
‘‘I choose a 24 hour ART service in this hospital since we may be sick at any time. We get the service in case of difficulty if the facility is opened all days including night’’. (25 years old female)
One participant preferred weekend service only.
‘‘I prefer the weekend-based service since I come here freely to take drugs on these days’’. (22 years old female)
Time spent at clinics in ART pick-ups
Most study participants preferred less waiting time at the ART room in ART pick-ups including registration, consultation, and pharmacy dispensing, cited saving time for work or school as the main factor.
‘‘I would prefer to get service in the shortest time since I am busy either going to work or school. But, if the service demands to wait for more, I would wait here instead’’. (22 years old male)
Few participants however chose to wait more time in the facility due to a need for adequate time to discuss with providers and talk with peers in the facility.
‘‘I prefer to wait a long time to learn from my providers about the drug and the related things. I also want to talk with other similar clients in this hospital. I would be happy when I come here and see other clients taking drugs like me. I become frustrated when I am alone in my home’’. (40 years old female)
The total cost of the visit
Nearly all participants preferred either a free or subsidized cost of the visit including transportation and medications other than ARV drugs.
‘‘I prefer the service free of charge. There should be a special arrangement from the facility to cover the cost of transportation for those clients who do not generate income like old persons’’. (25 years old female)
‘‘I believe that the free service that is currently being done is a good one. I recommend a balanced payment or a free service for those clients unable to pay for it [service]’’. (33 years old female)
One participant however was willing to pay for additional cost of transportation.
‘‘I will pay whatever transport cost I have been requested to come here. I have health insurance and do not pay other payments in this hospital’’. (40 years old female)