Background
According to the latest report of the Joint United Nations Program on HIV/AIDS (UNAIDS), in 2019, 38.0 million people globally were living with HIV, and around 690,000 people died from AIDS-related illnesses [
1]. This threat is dominant for countries in East Mediterranean Region, such as Iran [
2]. In 2019, 59,000 [33,000–130,000] adults and children were living with HIV in Iran. The number of men aged 15 and over living with HIV was estimated at 43,000 [23,000– 91,000], while that of women stood at 16,000 [8800–32,000] [
3,
4]. Injection drug use is considered the main cause of HIV transmission in Iran [
5]. According to a previous study, there were about 230.000 people injecting drug in Iran in 2016 [
6].
Since finding the first case of HIV/AIDS in the country, Iran has established different national and provincial institutions and has implemented different programs aiming to put the disease under control. For example, in 2003, the Supreme Council for HIV/AIDS Prevention Planning (SCHAPP) was formed [
7‐
9]. Accordingly, at national and provincial level, the department for Controlling Communicable Diseases was created within Ministry of Health and Public Health Deputy of Medical Universities. Besides, at district level, the peripheral institutions to provide specialized health services for HIV/AIDS patients are called “Behavioral Diseases Counseling Centers” (BDCCs). These centers are governmental and operate as a part of District Health Network under supervision of Public Health Deputy. BDCCs provide educational, counseling, diagnostic, preventive, and curative services to those who live with or are at the high risk of contracting HIV/AIDS [
6,
10,
11]. Following groups can use the services of BDCCs: people who inject drugs; individuals with sexually transmitted diseases; people with risky sexual behaviors like homosexuals and vulnerable women with unsafe sexual behaviors; health workers and other professions who are in contact with high risk groups or are the risk of encountering sharp and infectious tools; and also individuals looking for counseling services. A group of health staff including infectious diseases specialist, psychologist, general physician, public health technician and midwifes work in these centers.
However, emerging evidence indicates that vulnerable women and female having uncontrolled and unsafe sex behaviors are becoming increasingly a leading source of HIV incidence [
12]. For this reason, female sex workers are considered the second most at risk population for HIV transmission [
13]. As prostitution and sex work are illegal and extremely stigmatized in Iran [
14], it has affected the process of diagnosis and treatment of HIV/AIDS adversely and consequently has posed major challenges to cope with it in Iran [
5,
15]. To encourage safe sexual behaviors and control spread of HIV/AIDS in this part of population, other centers so-called “Vulnerable Women’s Counseling Centers” were created separately to provide counseling services, and distribute preventive and protective services for female at the risk of getting HIV (women live with HIV/AIDS use their curative services from BDCCs).
Additionally, several other supportive institutions such as “Drop in Centers”, “Outreach Team”, “Methadone Maintenance Therapy”, “Hot Lines”, and “Positive Clubs” have been established which provide supportive and empowering services for addicted, unprivileged and marginalized groups [
9]. However, Iran is still struggling reaching national and international health indicators regarding HIV/AIDS control. For example, the reduction of HIV/AIDS cases in Iran is lower than the global rate. Since 2010, the worldwide reduction in new HIV infections was 18%, while it was 10% for Iran [
16,
17]. Other indicators such as the rate of adherence to antiretroviral therapy (ART) which are crucial for successful HIV treatment shows that the situation is not promising. For example, the rate of ART regimens among Iranian people living with HIV/AIDS (PLWHA) is so as low as 20% and only 17% are ART adherent and virally suppressed [
5].
Various factors can hinder appropriate service delivery to people living with HIV/AIDS which in turn can impede implementing health program for HIV/AIDS, including diagnosis of new cases and adherence to treatment. Multiple structural, social, and psychological challenges contribute to non-adherence to treatment which stems from different causes [
18‐
20]. Among the most robust predictors of ART non-adherence is social stigmatization of HIV [
18]. HIV stigma affects working on HIV/AIDS objectives adversely and undermine all phases of health care provision from late diagnoses of HIV by discouraging high risk individuals from taking test [
21,
22], to suppressing antiretroviral treatment (ART) coverage and viral suppression rates as it impedes individuals from looking for the healthcare services they need and from attending medical appointments and taking their medication [
23,
24]. Other findings from various contexts suggest that different factors related to the health centers and health personnel may hinder HIV/AIDS individuals from accessing services. These include concerns about lack of privacy and confidentiality during HIV testing, distrust of healthcare workers’ ability to keep personal information confidential, stigma associated with being seen at health services, fear of punishment or criminalization, transportation costs, and financial barriers. These barriers and facilitators vary across different populations and settings, highlighting the need for more studies to identify other context based deterrents and facilitators [
25‐
30].
Previous studies in Iran have addressed other aspects of health status of people living with HIV/AIDS such as antiretroviral therapy adherence and determining factors in general [
5,
31], their quality of life [
32‐
34], factors affecting their survival [
35] and late diagnosis [
36], and etc. However, to the authors’ best knowledge, no study has still been carried out specifically on Behavioral Diseases Counseling Centers and Vulnerable Women’s Counseling Centers in Iran to reveal what may hinder or encourage people living with and at the risk of getting HIV/AIDS coming to these centers at the first step as they are the main peripheral centers that should attract people to take test, get their treatment, receive medications and other protective and preventive services, follow-up their health status, and adhere to treatment for the rest of their life. Conducting this study in Iran, as an Islamic country with strict laws and heavy social stigma against HIV/AIDS and sexual promiscuity, can provide new insights and reveal hidden angles on barriers to accessing services specialized for populations at the risk of HIV/AIDS that can be applicable to other countries with similar constrains.
Method
Study setting
This article presents the findings of qualitative section of a larger mix-method study done in 2023. The study population consisted of everyone visiting Behavioral Diseases Counseling (BDCCs) and Vulnerable Women’ Counseling Centers (VWCCs) in two western provinces in Iran, namely Ilam and Kermanshah, in 2023. These two regions were selected as they generally have similar cultural and social context and the members of research team are from these two provinces. Another reason to mention is that Ilam province (the initial place for the purpose of the study) is a small region and the number of patients to participate was not enough to cover both qualitative and quantitative phases of the main study, so it was decided to extend the study to the neighboring metropolis of Kermanshah aiming to have adequate number of participants to run the study (The distance between these two cities is about 170 km). Although this decision enriched findings of the study because the BDCCs and VWCCs of these cities are located in different geographical regions and there are potential differences among them in terms of physical and structural conditions of the centers, service provision processes, staff performance, and etc. These differences provided a better opportunity to extract the most factors affecting the clients’ trust as possible. Kermanshah has two BDCCs and two VWCCs and Ilam has only one BDCC. All of these five centers were selected to recruit interviewees. For better understanding of the health facilities as a part of the study context, the number and composition of health staff working in these centers in 2023 are shown in Table
1.
Table 1
The number and composition of health personnel working in facilities selected for the purpose of study
Ilam University of Medical Sciences | Behavioral Diseases Counseling Center | 8 | Midwife [1] Psychologist [1] General physician [1] Infectious disease specialist (1, part time) Clinical laboratory technician [1] Head of the center (public health expert) [1] Janitor (1, part time) Social worker [1] |
Kermanshah University of Medical Sciences | Behavioral Diseases Counseling Center, number 1 | 15 | Midwife [1] Psychologist [2] Pharmaceutical technician [1] Psychiatrist (1, part time) General physician [3] Infectious disease specialist [1] Pediatric specialist (1, part time) Clinical laboratory technician [2] Head of the center (Ph.D of health promotion) [1] Receptionist [1] Janitor [1] |
Behavioral Diseases Counseling Center, number 2 | 8 | Midwife [1] Psychologist [1] Pharmaceutical technician [1] General physician [2] Clinical laboratory technician [1] Head of the center (public health expert) ( [1] Receptionist and Janitor [1] |
Vulnerable Women’s Counseling Centers, number 1 | 2 | Midwife [1] Psychologist [1] |
Vulnerable Women’s Counseling Centers, number 2 | 3 | Midwife [2] Psychologist [1] |
-Number of active and inactive HIV/AIDS patients and female sex workers were not provided for confidentiality reasons.
Sample size, sampling method, and interview guide
The study population composed of two main groups: (1) HIV/AIDS patients and people visiting BDCCs, and vulnerable women coming to VWCCs, (2) the health staff members working in these centers. So purposive sampling was applied to select interviewees from the above groups.
Moreover, since the researchers were not familiar with all the knowledgeable people at the beginning of the study, further samples were identified using snowball sampling. To do so, at the end of each interview, the participants (mainly health workers) were asked to introduce other people with relevant knowledge and experience for interview, even if they worked in other organizations. Using snowball sampling, two experts from other organizations working with vulnerable groups such as the State Welfare Organization (Sazman-e Behzisti) and two experts with previous experience in DBCCs were identified. Furthermore, we tried to apply maximum variation sampling by selecting interviewees from 5 BDCCs and VWCCs located in different geographical regions; interviewing people from different groups including health staffs with different professions from different organizations, people living with HIV/AIDS and vulnerable women; and recruiting interviewees from both sexes. Apart from old patients, we tried to interview new cases if possible. The sample size is directly associated with data saturation and interviews continued until no new data or idea was revealed, and interviewees repeat the subjects already mentioned. A semi-structured qualitative interview guide was used to do the interviews. The questions were based on the study objectives. The initial version of the questions was approved through discussions among the research team members and feedback that we get from the key informants (health workers working BDCCs and VWCCs) during the first interviews. These were the main questions outlined in the interview guide: What were your initial concerns when considering a visit to the center? What about the next visits? Which attributes of the healthcare staff motivated or dissuaded you from continuing to visit the center? What aspects of the clinical and administrative procedures instilled confidence or apprehension in you regarding the utilization of healthcare services at the center? What is your assessment of the center’s location and infrastructure? What precautions do you take to address any concerns prior to visiting the center? While the main questions remained consistent, additional questions were introduced in subsequent interviews as new ideas and inquiries emerged throughout the research process. It is important to highlight that unlike quantitative studies, qualitative research allows for flexibility in the interview guide, enabling researchers to adapt and refine questions as they deepen their understanding of the topic over the course of the study.
Individual interviews and focus group discussions
The interviews were initiated after official correspondence with the Public Health Deputies of Ilam and Kermanshah Medical Universities. An interview guide was used to conduct the interviews. The interviews normally began with simple and general subjects and moved toward more specific questions. Also, probing questions were employed to obtain more accurate and in-depth information by encouraging the interviewees to give more explanations. At the beginning of each interview, after explaining the importance of recording the interview and assuring them of the confidentiality of the contents, the interview was recorded using two voice recorders. At the end of each interview, the interviewee was asked to introduce experts and people with knowledge in the field of this study to be interviewed to gain complementary information. The main researcher (MB), interviewed all health staff members from Kermanshah and Ilam. Whenever possible, these interviews were conducted face to face at the BDCCs and VWCCs. In 8 cases, personnel from Kermanshah were interviewed over the phone due to physical distance. The phone interviews were conducted at home in privacy, with the speakerphone on and the audio recorded using a recorder. In-depth individual interviews were utilized in, 14 cases, involving a range of health professionals such as general physicians, psychologists, midwives, laboratory technicians, and public health experts. Table
2 displays key characteristics of the health staff interviewed, including their position, gender, age, work experience, years in the field of HIV/AIDS and the duration of the interviews. There was no repeated long interviews but we asked the initial interviewees additional questions in-person or on the phone later on during the research as new questions arose. In two cases, despite multiple follow-ups and setting time to interview over phone, we were unable to conduct interviews due to the busy schedules of the interviewees. To foster deeper discussions and extract more nuanced insights about the subject, focus group discussions (FGDs) were employed whenever possible. Two FGDs were conducted, one with four health staff members at the Ilam BDCC and another with three employees at BDCC number 1 in Kermanshah. These FGDs took place in the psychologist’s room at midday to ensure a quiet and conducive environment for open dialogue without interruptions. The main investigator (MB) facilitated the discussions, each lasting for an hour. The use of group discussions created an interactive setting that encouraged participants to recall and share additional details regarding the factors influencing people’s trust in visiting the BDCCs and VWCCs. In total, 21 personnel were engaged in the study, with 14 individuals participating in in-depth individual interviews and 7 taking part in FGDs.
Table 2
The main characteristics of health personnel interviewed
21 | General practitioner [2] Psychologist [8] Midwife [6] Laboratory technician [1] Public health technician [3] Social worker [1] | Male [6] Female [15] | 32, 46, 61 | 1, 19, 27 | 1, 6, 20 | 30, 45, 70 |
However in regard with the HIV/AIDS patients and women coming to the BDCCs and VWCCs, another approach was applied. In accordance to confidentiality principles, one of the staff members from each center, was selected to conduct the interviews on behalf of the research team. To do so, three health workers from three centers were selected, BDCC number 2 and VWCC number 2 from Kermanshah and the only BDCC from Ilam. All of these health staff who agreed to collaborate were female. In other centers, no health staff agreed to participate in doing the interviews. Having a close relationship with patients and being interested in research project were the criteria to select the interviewers. The selected health staff were interviewed as key informants which enabled them to gain a thorough understanding of the research objectives and qualitative interview techniques. Moreover, the selected members were trained about the main ethical principles and how to conduct interviews. Additionally, the recorded interviews conducted by the health staff were heard and analyzed several times by the main investigator (BM). Constructive feedback was provided to the interviewers to improve the quality of subsequent interviews. Notably two of these staff held Master of Science degrees in relevant health fields and possessed a solid understanding of fundamental health research methodologies. In total, health staff could interview 20 HIV/AIDS patients and female sex workers, including 6 individuals from Ilam BDCC, 12 and 6 individuals from Kermanshah BDCCs and VWCCs respectively. Patients were mainly male and the interviews lasted from 10 min to 35 min (20 min on average). The duration of interviews with patients was normal as they had specific and limited but different concerns for visiting or not visiting health centers. On the other hand, one of the limitations of the interviews was that some of participants wanted to finish the interview quickly and leave the center. Only three of cases in BDCCs were new visitors while the rest were regular and routine visitors of the BDCCs and VWCCs. In 8 cases, mainly female sex workers, they did not allowed recording their voice, so interviewers took notes of the main points. Furthermore, according to the interviewers, approximately 7 visitors refused to participate in the study due to inappropriate mental conditions, being in rush, and fear of their identity being revealed by recording their voices. Interviews were done within the time period between January 5th and May 21st, 2023. For the confidentiality purposes, no detailed demographic information of the patients was provided. In both groups (personnel and visitors), we reached saturation at about 17th interviewee, but we conducted 6 extra interviews, 3 for each group, to ensure not missing new data. Literature review was done from 10 July 2022 to 25 June 2023, no time limitation was applied for extracting the related articles.
Discussion
This study investigated the most important factors affecting HIV/AIDS patients and vulnerable women visiting BDCCs and VWCCs respectively. The factors were categorized into three categories including medical and operational processes, mutual interactions between the personnel and visitors (people living with and at the risk of getting HIV/AIDS), and the physical characteristics of the centers. This section provides a discussion of the findings.
Due to the significant social stigma associated with HIV/AIDS in Iran in general and in Ilam and Kermanshah in particular, it is crucial for BDCCs and VWCCs to carefully consider the clinical processes and the provision of medical and counseling services to these patients. The success of the treatment process relies on providing services that meet the clients’ needs and are based on their preferences. The findings of the study indicate that within the current context of Iran, it is important to avoid asking too many questions or focusing on the cause of the disease during the initial visits in order to increase the patient’s interest in continuing their visits to the centers and adhering to the medical instructions. Accordingly, the personnel should not insist on receiving identity information, at least in the first visits, and it can be postponed until trust is established. Using codes instead of personal information can help patients to feel secure, particularly in small towns where familiarity is more likely.
Confidentiality is of utmost importance in BDCCs and VWCCs and the building design should provide a safe environment for clients to feel secure about their privacy. Colleagues should also avoid interrupting the counseling process and create a comfortable atmosphere for all clients. Similarly, studies from Ghana and Sub-Saharan Africa showed that pregnant women and other groups stated doing HIV test in an open and not private space and not trusting health workers’ being confidential as the reasons for refuting taking HIV test [
25,
26]. Moreover, studies of the Global Fund to Fight AIDS, Tuberculosis and Malaria showed lack of confidentiality and gossiping as common behaviors among healthcare workers. These behaviors can make HIV patients and sex workers highly worried about no secrecy of their personal information, their HIV status, or sexual activities in the society [
27].
Moreover, to address concerns about answering questions regarding the cause and history of visitors’ disease, personnel should wear a uniform with a tag displaying their first and last name and position. Additionally, according to the interviews, some patients may prefer to avoid in-person visits, especially in small provinces, to minimize the chance of encountering familiar faces. Another factor contributing to creation of a positive view of BDCCs is the management of fear of death among HIV/AIDS patients and helping them hope the possibility of living a normal life through regular taking medication. Remote services, such as electronic services and phone calls, can be developed to minimize in-person visits. These services can allow patients to confirm that no familiar or new individuals are present at the centers while visiting the centers. Other relevant studies also indicate that deterioration of physical health and/or death of sexual partner or child are among the enabling factors for up-taking HIV test [
26].
Phone or virtual counseling can also ensure confidentiality is maintained. Such facilities can enable patients to make sure no familiar person or new person is in the centers before going there. During the time period that this study was conducted, there were not strong remote and friendly-used online or telephone services in the studied centers, for HIV/AIDS patients or female with risky sexual behaviors to rely on. It definitely make it difficult for visitors, especially new cases, to visit the centers. The stigma of being seen at health services has been stated by previous studies as a major barrier to utilizing health services by HIV patients [
28]. To improve health services utilization for HIV/AIDS patients in Iran, it may be useful to create a website with information about the responsibilities, exact address, contact information, and personnel working in the BDCCs. This may reduce patients’ concerns and contribute to more convenient visits, especially, during their first visits. In this regard, social media can also be utilized to promote the website and availability of such centers.
Another crucial factor improving the quality of health services in BDCCs and VWCCs is the employment of personnel who are flexible, patient, and accessible, with effective communicative skills and specialized counseling knowledge for individuals living with or at risk of HIV/AIDS. The personnel should treat clients with dignity and respect, convey medical instructions accurately and motivate and assure patients to continue their treatment. Continuous training courses should be provided to maintain their skills, and the personnel should be selected carefully and not transferred frequently. Additionally, according to our findings, it is advisable to avoid employing health forces with strict religious beliefs and religious appearance in BDCCs and especially in VWCCs as their religious beliefs may hinder effective communication, especially with female sex workers. Personnel should avoid making clients feel blamed or shamed behave normally when encountering the HIV/AIDS patients outside of the center. According to the findings from Ghana and San Francisco, women and drug users mentioned that not being treated well by the nurses and snobby attitude of the staff discouraged them from participating in the facilities for HIV testing and counseling [
25,
29,
30]. Other studies also referred to lack of training for medical staff on medical ethics as a reason exacerbating the problem [
28]. Feelings of blame and shame and confronting stereotypes of HIV are strong among HIV positive and sex workers and can prevent them from coming to health centers at the first step [
44]. Personnel should be aware of that and try to reduce these feelings in their patients.
Findings of our study revealed that patients and sex workers in particular are afraid of being prosecuted by security and legal agencies. Other studies shows similar findings, for example drug users were afraid of “punishment and being locked up” if their HIV test was positive [
29] and also in Denmark criminalization hinders women who use drugs from access to harm reduction services [
27]. An effective factor in gaining other patients’ trust is the satisfaction of the current and previous clients. Therefore, using this capacity can be effective in expanding the services, identifying other patients, and providing services to a larger population in severe need of these services.
The physical properties and location of the centers are also important considerations. Counseling rooms should be soundproofed to ensure patient conversation cannot be overheard. Similar to standards for building rural and urban comprehensive health centers in Iran, a building plan with defined standards should be developed for BDCCs and VWCCs to address all the concerns raised in this study. Furthermore, financial support should be provided at the national and provincial levels to establish an adequate number of these centers across the country. Insufficient space in some centers for providing a safe waiting area, maintaining confidentiality, reducing unnecessary encounters between the clients, and archiving their files was a major concern among interviewees. Establishing larger centers, especially in small cities, can help alleviate these concerns.
Another important factor rooted in the context of research site which affects health care utilization by people is the location of the of the BDCCs and VWCCs and their operation as independent centers or centers integrated into other medical facilities. According to the findings, it is better to establish BDCCs and VWCCs in crowded areas and near other medical centers. This allows HIV/AIDS patients and vulnerable women to visit the BDCCs and VWCCs more conveniently without drawing attention. Also, most of the interviewees expressed a preference for the centers to be integrated into larger facilities or separate buildings within a larger environment with a common entrance, rather than operating as independent centers. This allows patients to blend in with other clients and conceal the reason for their visit. Although this has been considered in the BDCC booklet, the centers in this study operate as a separate buildings, which creates a barrier to patient visits. Although this may adversely affects health services utilization by other groups. In many countries, such as the US, Sweden, New Zealand, India, Lebanon, Mozambique and Zimbabwe, health centers for HIV/AIDS are located in rural and urban areas, and the public and private sectors work together in this field [
45,
46]. However, in Iran, situation is different and these centers are located only in cities and are only run by the governmental sector. Cities are preferred as people are less likely to know each other. Even a part of patients prefer not use health services available in their cities and go to other cities due to social stigma and fear of seeing acquaintances. Due to the substantial stigma associated with this disease in Iran, establishing these centers in rural areas is neither recommended nor possible. In order to preserve the confidentiality of HIV/AIDS patients in Iran, and to properly manage the distribution of specialized medications and diagnostic tests for these patient, all diagnostic and treatment measures for HIV/AIDS patients are centralized and provided free of charge in the public sector through the Behavioral Diseases Counseling Centers. The private sector currently only has the responsibility of referring suspected HIV cases to the BDCCs.
Another notable issue to consider is the establishment of BDCCs and VWCCs in easily accessible locations with the aim of reducing transportation expenses for patients, especially those from poor and vulnerable groups. Increasing the number of these centers in various urban regions not only facilitates patients’ visits and reduces their transportation costs, but also provides them with more options to choose from, thereby addressing concerns about encountering acquaintances during visits. Financial difficulties were identified as a barrier to regular visits to BDCCs and VWCCs. To encourage clients to visit these centers more frequently, interviewees mentioned the importance of proposing financial and food support. Additionally, one positive aspect of these centers in Iran is that there are no geographical restrictions, allowing patients to visit any center they feel comfortable with, regardless of their place of residence. According to the findings of the study and considering the current limitations which exist in Ilam and Kermanshah, it is recommended to avoid using HIV and AIDS signs within the facilities. Furthermore, it was also proposed that diversifying services and offering services for a variety of patients such as tuberculosis, diabetes, thalassemia, hypertension, etc., can provide a better environment for HIV/AIDS people to continue their treatment conveniently. Installing educational banners about other diseases outside the centers and on websites, while highlighting the availability of these facilities, may also increase patients’ visits. Similarly, the study by Downing in San Francisco showed that convenience, increasing the number of HIV test sites, free transportation and monetary incentives were among the main structural motivating factors for drug’ users to take HIV test [
29]. Removing financial barriers and convenient access to HIV test were among the facilitators helping people take HIV test in Sub-Saharan Africa [
26].
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