HIV Positive Patients ' Experience of Receiving Health Care Services : A Phenomenology Study in Iran

RESEARCH ARTICLE HIV Positive Patients' Experience of Receiving Health Care Services: A Phenomenology Study in Iran Heshmatollah Asadi, Mohammad-Hasan Imani-Nasab, Ali Garavand, Mojtaba Hasoumi, Abdollah Almasian Kia, Behzad Haghi and Fatemeh Setoodehzadeh School of Health and Nutrition, Lorestan University of Medical Sciences, Khorramabad, Iran Social Determinants of Health Research Center, Lorestan University of Medical Sciences, Khorramabad, Iran Department of Health Information Management and Technology, Shahid Beheshti University of Medical Sciences, Tehran, Iran Health Management and Economics Research Center, Iran University of Medical Sciences, Tehran, Iran School of Health Management & Information Sciences, Shiraz University of Medical Sciences, Shiraz, Iran Health Promotion Research Center, Zahedan University of medical Sciences, Zahedan, Iran


INTRODUCTION
HIV/AIDS is still a major public health challenge worldwide, especially in low-and middle-income countries [1].Nearly 36.7 million people in the world are infected by HIV [2].
The World Health Organization (WHO) reports indicate that the rate of HIV infection is declining worldwide in line with the Millennium Development Goals.New HIV infection cases in 2015 (2.1 million cases) in the world were 35% lower than in 2000 (3.2 million) [3].
Unfortunately, WHO statistics not only did not show the downward trend of HIV infection in Iran, but the estimations by WHO indicate that during 2000 to 2015, the number of People living with HIV/AIDS (PLWHA) in Iran increased from 24,000 to 73,000 [4].According to WHO annual report in 2017, HIV prevalence rate in Iran among people aged 15-49 was about 0.1 (<0.1-0.2).An estimation of 0.09 (0.0 -0.322) incidence rate per 1000 persons aged 15-49 was also reported by WHO.These statistics show that the number of adults and children newly infected with HIV is about 4700 (4700 -11000) people [5].
HIV patients face numerous problems, including; Stigma [6] and discrimination [7], lack of access to services [8], and lack of observation of their rights [9].Stigma has devastating effects (such as depression, low self-esteem, low quality of life, and poor health outcomes) on the HIV patient [10].In countries where HIV-infected patients are stigmatized, they are physically and verbally humiliated.It has been reported that 12-88% of HIV patients do not have access to health services [11].Although knowledgeable, trained and motivated health care staff can play a critical role in meeting the health care needs of HIV patients, they may also play a major role in limiting the services provided to the patients [12].
The results of a study in Vietnam showed that discrimination against HIV-positive patients was common in the community and in the health sector, which hindered the use of health services by the patients.The results also showed that this attitude towards the patients would cause them to lose their jobs or get isolated [13].Another study conducted in Iran reported that 49% of nurses had a negative attitude toward HIV/AIDS patients [14].The findings of a study by Holtzman et al. (2015), in which Andersen's Behavioral Model (ABM) was used for identifying barriers to providing care for HIV patients, showed that external environment factors were among recognized affecting factors of providing care [15].
Most studies focus on the care of HIV/AIDS patients in big cities, while results from different studies show that these patients in small cities and rural areas face their own challenges [16], such as more stigma [17] and more barriers to access care services [18].It has also been proven that HIV patients living in far-away areas have less medication adherence [17].
Therefore, we decided to investigate the barriers and problems encountered by HIV-positive patients when receiving health care services in small cities and rural areas of Iran.

METHODS
The present study was conducted in Iran where the Ministry of Health and Medical Education is the head of the health system and is responsible for policy making and supervising service provision in different levels of the health system.Executive tasks of the Ministry of Health have been delegated to Medical Sciences Universities of each province.In each city, there is a district health network which constitutes the smallest independent health service organization in Iran's health system.All hospitals and health care centers (in cities and rural areas) provide health services under the supervision of districts health networks [19].In cities, there is a Behavioral Disorders Counseling Center [20] which is responsible for providing services for patients suffering from HIV, HBV, HCV and addiction.In rural areas, health care centers are responsible for these tasks.This study was conducted in Lorestan and cities with less than 100,000 populations were chosen for the study.
The present study is a qualitative one which was carried out using the hermeneutic phenomenology method in 2016.Hermeneutic phenomenology examines the meanings and the relationship between knowledge and its context, and is basically the interpretation of written phenomena.The value of knowledge in health-related fields largely depends on its relevance and importance in understanding human experiences, and hermeneutics provides a way for a deeper understanding of humans and human experiences such as health and disease [21].
The inclusion criteria were: being infected with HIV, ≥ 10 years old, knowing their HIV positive status for at least 3 months and providing informed consent for participation in the study.For those under 18 years old, consent form is signed by their parents/guardians.To select the participants, purposeful sampling was applied.
In purposeful sampling, samples are chosen based on aims [22] of the study and required information.So participants that have been interviewed together with their information will affect the next samples that will be chosen [21].In the present study, Semi-structured interview and interview guide were used for collecting required data.
Before conducting the interviews, the research objectives and the characteristics of the research team were explained to the interviewees and their informed consent was obtained.The interviews were in-depth and semistructured (face to face).All interviews were conducted from April to August, 2016.
To conduct the interviews, coordination with the participants was done and they were interviewed at the particular time they had offered.Interviews were conducted by two of the researchers (H.A. and A.G.).An interview guide had already been prepared using the views of the experts and the research team and based on the study objective.
Interview questions were semi-open.In semi-structured interviews with semi-open questions, the interviewer and interviewee are free to discuss more on the subject.This method allows the interviewer to ask further, differentiated questions, in addition to the questions identified in the interview guide, in order to obtain more detailed information on a specific subject.The interviewer can also ask questions in relation to the topic under discussion, about the issues raised during the interview [23].
The duration of each interview was 25 to 75 minutes.Each interview was conducted by one of the researchers in the absence of any other participant apart from the desired participant.The participants' words were recorded using a Sony icd-px33 sound recorder.During the interviews, note taking was also used to record the information.
Upon completion of an interview, it was listened to several times and then typed word-by-word so that the access to saturation level would be reached through the similarity and appropriateness of the individuals' responses.In the present study, data saturation was observed doing 15 interviews but due to the discussions between the research team members and for more certainty, 17 interviews were conducted.A total of three people who did not meet the inclusion criteria were excluded from the study.To comply with the principle of data immersion, interviews were repeatedly listened to and then typed by three members of the researchers (H.A., A.G. and M.H).
The data analysis was performed using MAXQDA10 software, and the data were analyzed using Colaizzi's method.The research team conducted peer check to agree on the codes and review the interview texts, and also reviewed the findings with the interviewees through member check.This study was reviewed and approved by the Ethics Committee of Lorestan University of Medical Sciences, Iran (No. IR.LUMS.REC.1394.131)before commencement.

RESULTS
In this study, a total of 17 people were interviewed, of whom 14 were male and three were female.Other specifications are presented in Table 1.Analyzing the participants' experiences revealed that the problems encountered by the patients, in terms of receiving health care services, included 10 categories, 32 themes and 67 subthemes (Tables 2, 3 and 4).

Patients' Experiences Before Referral
The patients who participated in the study had experienced some problems before referring to health care centers.Their experiences had led to the lack of referral, low referral, and decreased motivation to refer to the health care centers.

Fear of disclosure of the Disease and Scandal
According to the participants in this study, one of their most important fears was the fear of disease disclosure.The fear of being known as HIV-infected patients by neighbors and other people, being seen by relatives, and being recognized as HIV patients by the health care personnel, were some of the experiences pointed out.Some of the quotes are as follows: -"I'm trying not to go to a dentist at all, because I'm afraid somebody will notice my disease" (P.11).
-"Some of our neighbors have told my dad why I go to the consulting center.So, now I have a problem with coming to this behavioral disease consulting center and I sometimes stay around for 4 hours to make sure that nobody sees me, and then I come in" (P. 6).
-"My mother had suspected why I came to the consulting center; so I told them I was taking methadone from here to quit my drug addiction.Otherwise, I promise they'll abandon me.I told them I only came here to get methadone, and if they know I am HIV-infected, I'm sure they'll stay away from me and won't approach me anymore" (P.16).
-"Particularly if any acquaintance accompanies me, I won't say I have the disease because I don't want them to know about my diseases" (P. 7).

Fear of Confronting Providers
One of the experiences of the participants was the fear of the inappropriate manner exhibited by the health care personnel.(This fear leads to the lack of referral of patients, self-medication, or referral of the patients to traditional therapists or concealing their disease at the time of referral).Some related experiences of the patients were the fear of patient refusal, the fear that the personnel might change their behavior, and the fear of being rejected by the health care staff.In this regard, some of the experiences of the patients were as follows: -... "there is also the fear of changing their behavior.Believe me, I had a bad toothache but I took pills and didn't go to the dentist" (P.11).
-"When I'm about leaving home I just think within myself: Oh, God! How can I go?Should I go there or not?I'm always afraid I might be maltreated" (P.9).

Expectations for Support
The patients emphasized their need to be supported by the community, government, and health care systems before referring to receive services.The participants in this study had some expectations before referring for services, among which were the expectations for appropriate attitude by health care personnel, receiving high-quality health care services, receiving the services in a reasonable and proper time, observation of safety principles by the health care staff, not being rejected by the health care staff, being accepted by the health care providers, mental support, secrecy, more equipped counseling centers for behavioral diseases, correcting people's views about HIV-positive patients, observing the rights of HIV-positive patients, and introducing service centers to HIV patients.Some of the patients' quotations regarding "expectations for support" are as follows: -"A doctor or nurse can be very influential in my life.Even if a doctor or nurse tells me falsely: "God may heal you ", I'll get energy and strength from his/her words...There must be a center where we could report that sometimes we go and no one helps us.Or there must be a phone number for reporting these cases" (P.4).
-"We have that disease for sure.At least our rights should be observed in the few years we're going to live.I shouldn't be excluded.Instead of taking my hand, they catch me red-handed.At least somewhere should be introduced to us by the Behavioral Disease Consulting Center so that we can go there for dentistry services" (P. 6).
-"Should I not have a place in this community?I was stupid, I didn't understand, and for whatever reason I got this disease.I have now been excluded from society, I need support now, I demand that the health care personnel help me when I need them" (P. 7).

Patients' Experiences when Receiving Services
The participants in the study had experienced some problems when they referred to the health care centers.What follows is the secondary themes and quotations from the participants in the study.

Inappropriate Attitude of Health Care Staff
The inappropriate attitude of health care staff included the following secondary themes: discrimination, humiliation, rejection by the staff, and patient refusal.Some patient quotations were as follows: -"For example, when I want to give them my health insurance book, they wear gloves and take a corner of the book.It gives me a bad feeling and is really annoying.Sometimes I'm choked with tears and say to myself that I should quit taking these drugs" (P.11).
-"One day, I went there and after they understood I was an HIV patient, they said they didn't have empty beds" (P. 1).
-"I told him I was an HIV patient.He first said they didn't have sterile gas, and then said they were out of ampoules" (P.3).
-"As soon as I said HIV she completely changed as if her head was hit with a hammer" (P. 7).
-"I caught a cold when I was in prison.There was a doctor there whom I referred to and said that I was an HIV patient.He started to swear and told me very bad things such as "You are a parasite of this community.You are a misfortune for the community.You made yourself miserable and want to infect other people in the society" (P. 6).

Concealment of Disease
This theme includes the following secondary themes: concealment of disease due to the fear of patient refusal, concealment of disease due to the fear of inappropriate behaviors of others, concealment of disease due to the fear of changing behaviors, concealment of disease due to the fear of being imposed with more costs, concealment of disease due to the fear of being judged, concealment of disease due to the fear of disease enclosure from patient companions, concealment of disease due to the fear of being rejected and not receiving service.These problems cause the patients to conceal their disease when they refer to health care services and not inform their nurses, physicians, or other health care personnel about their disease.Here are some of the patients' quotations: -"When I go there, I don't say I'm an HIV patient, because they may reject me and don't provide me with services" (P.5).
-"For example, when I went to the dentist, I was careful not to let them know I was an HIV patient; otherwise, they might change their behavior" (P.11).
-"When I went there, I didn't say that I was an HIV patient because I knew their behavior would change completely" (P.8).

Hardship Endurance
Hardship endurance means enduring the difficulties that HIV-positive patients face when receiving health care services, including long waiting times in receiving services, prevention of people from providing services to HIVpositive patients, imposing additional costs to the patients, taking test samples without the patients' permission, and curiosity about the disease.These factors cause the patients to suffer from hardship when referring to health care centers to receive services.Some experiences of patients are as follows: -"I had to go to one of the neighboring towns for my Caesarean section ...We waited until night, and following further coordination, we finally got admitted.I even had gone there before, but to get rid of me, they falsely said: " Go home and come back in a few weeks" (P.5).
-"I had liver problem and my belly was swollen.I was sent to be admitted but they didn't admit me and I was in the corridors for some days.They said they didn't have an empty bed and asked me to go home and come back the next day; but I stayed there overnight, and again the next day they didn't admit me" (P.15).
-"For example, dentistry; I swear I didn't have my teeth pulled in this city ... I had to go to a neighboring town to have my tooth pulled" (P.4).

Financial Concerns
Financial concerns are the patients' experiences with regard to high drug costs, costs of medical tests, and financial inability of the patients with HIV.In this regard, the patients expressed their own experiences as follows: -"I used to go to 13 Aban Pharmacy in Tehran to get my liver medicines.Every month, I paid 260,000 tomans (74.2 $) just for my ampoules, apart from transportation costs and fares.It goes back to years ago, but due to lack of finance I didn't continue my treatment course" (P.9).
-"Sometimes I get sick and the cost of some medical tests is very high.For example, some tests cost 1700000 tomans (485.7 $).Sometimes they introduce charity centers, but these are mostly in Tehran.Well, it is two years since I've been unemployed, and I really can't afford even the transportation costs, let alone paying for my medical tests" (P.11).

Patient Experiences after Receiving Services
These experiences relate to after receiving services by HIV-positive patients.As the patients pointed out, the problems encountered before and at the time of referral have caused some complications and unpleasant experiences after the referral.These experiences are dealt with in the following.

Psychosocial Stress
How to deal with the patients and the problems arisen will cause psychological stress in the HIV-positive patients after their referral.Some of these stresses are called despair, anger, regret, suicidal thoughts, depression, and feeling of guilt.For instance, the patients participating in this study stated that: -"In some places I go for injections, they refuse to administer the injections, leaving me disappointed; I ask myself: "what do I want this life for?"Why should I be alive?"I swear to God, I was about to commit suicide once the dentist didn't give me any services" (P.4).
-"Then, outside the hospital, I was so angry and I felt so sorry for myself that I injected all the ampoules for myself as I noticed there was no camera there" (P.13).
-"Honestly, once I referred for an injection, but I didn't say that I was sick.Then I feared there was a 1% possibility that they wouldn't notice the blood-contaminated syringe and wouldn't observe safety precautions, so that one of the staff who mopped the floor in the hospital might touch the syringe and the disease might be transmitted to him/her.I felt guilty, and that feeling tormented me for hours and days.Even after a long time I didn't calm down and still felt guilty" (P.4).

Disclosure of Patient Information
One of the important problems the patients reported was the disclosure of patient information and the fear of disclosing patient information by health care providers, physicians, nurses and other staff.Some patients said they had such an experience.Some patients' quotations are as follows: -"Once the healthcare provider who worked in our village knew that I was an HIV patient, he revealed it to some of the villagers.Since then, the people in the village stayed away from me and said that my entire family was infected with HIV.So, I had all my children and my wife checked to prove the villagers that my children weren't sick (P.17).
-"In this very behavioral disease counseling center, about five years ago the employees had informed the family of an HIV patient about his disease, and he told us the story.Since then, I didn't trust the employees for a long time and I was afraid that the health care staff might not be confident" (P.9).

DISCUSSION
Iran is among the countries where the trend of getting AIDS has not only failed to decline during the past 15 years, but it has been rising continuously [4].Various studies have been done on the problems of HIV-positive patients in Iran, but they have been mainly conducted in large cities with a high urban population, including Tehran (urban population of 7.8 million), Isfahan (urban population of 2.1 million), Kerman (urban population of 632 thousand people), and Shiraz (urban population of 1.7 million) [24 -30].However, small cities (urban population less than 100,000 people) and rural areas have their own problems, and the patients living in these areas should also be taken into consideration [16].

Patients' Experiences Before Referral
The findings of this study showed that one of the problems of HIV-positive patients before referring to receive health care services is their unpleasant experiences, including the fear of disease disclosure (to health care staff, neighbors, relatives and acquaintances).Results of the study by Cook et al., in 2015 showed that in rural and small communities in northern Florida, HIV patients have fears of issues such as confidentiality and privacy; and the fear of being recognized by friends and acquaintances working in health care centers and the fear of disease disclosure were the major causes of not patronizing health care services.Furthermore, the limited number of service providing centers was another problem for HIV patients [16].The results of Cook et al., study are consistent with those of the present study.But the results of the studies conducted in large cities are not consistent with our study results and they did not report the fear of disease disclosure among HIV patients [13,27,28,30,31].
It is recommended that health system authorities and policy makers design and implement public education programs for the general public, introduce health mobile services to provide Tele-counseling to HIV patients, and provide online appointment reservation and scheduling mechanisms for health care services through telephone and Internet.
The findings of this study showed that another problem of HIV-positive patients before the referral for health services was the fear of inappropriate attitude of health care personnel.Cook's findings also showed that the fear of inappropriate behaviors in the community prevented the patients from engaging in their care process [16].But in 2011, Kagashe et al., conducted a study on patient satisfaction with health care services provided in HIV clinics.The results of their study showed that 97.3% of the doctors in Amana Clinic and 93.2% of the doctors in the Muhimbili Clinic had a friendly behavior with the patients [32].It is recommended that the authorities in Iran take into consideration the measures taken in other countries regarding the appropriate behaviors towards HIV patients and use their effective experiences.
In the process of learning from other countries' experience, the focus should be on health care providers.For this, it is suggested that training courses for health care personnel should be planned, implemented and assessed.Appropriate legislation and legal support of HIV patients against inappropriate treatment and discrimination can help to reassure them on the health system.Another problem of the patients before referral was inadequate patient support.The patients are confronted with a limited number of service-providing centers and inadequate facilities.The participating patients expected HIV service providers to be introduced to them.They also expected to be provided with more facilities such as dentistry services at the Behavioral Disease Consulting Center.The patients expected more support from the community and the health system.The UNAIDS report on MENA countries emphasized that in areas where governmental and nongovernmental support was low, working with high-risk populations and groups was really difficult.The report also emphasized that the participation and capacity of social organizations in the countries of the region were limited and needed to be redesigned in accordance with the needs of HIV patients [33].It is recommended that more legal supports be provided for HIV patients and the number of service providers, especially in less populated areas should be increased.Providing sufficient equipment and trained personnel is also recommended for behavioral disorders counseling centers.

Patient Experiences During Referral
The results of this study showed that one of the problems of the participating patients was the inappropriate attitude of the personnel when they referred to the health care centers.The inappropriate attitude included discrimination, humiliation of the patients, rejection of the patients by the personnel, and patient refusal.In 2012, a study was conducted by Thanh et al., in Vietnam.The findings of the study showed that discrimination against HIV-positive patients in the community and in the health sector was common and prevented the search for and use of HIV-related services by the patients [13].Karamouzian et al., also showed in their study that HIV patients had experienced verbal and non-verbal blames by service providers [28].The results of that study are consistent with those of the present study.Zeighami Mohammadi's study of nurses showed that there was a significant relationship between the fear of the risk of HIV/AIDS and discrimination against the care and treatment of AIDS patients [26].Hence, one strategy was to educate health and medical personnel.Besides, providing appropriate facilities for the care of HIV patients might help correct the inappropriate behaviors exhibited by the health care personnel.
The UNAIDS report emphasized that stigma and discrimination were among the threats faced by MENA countries.Stigma and discrimination were some of the main reasons why HIV-infected people or at-risk populations did not have access to essential HIV services.Discrimination and stigma also limited the effectiveness of the response to HIV in this region [33].
The findings of this study showed that one of the patients' experiences when visiting the hospitals and health centers was their disease concealment.Disease concealment might occur for various reasons such as the fear of being rejected, the fear of not being admitted, and the fear of a change in the attitude of health care personnel.In their study, Fallahi et al., examined 330 patients who referred to three behavioral disease clinics in Tehran.The results of their study showed that 40% of HIV-positive patients had not informed their treatment team about their disease when using dentistry services, and the most common reason for this was their fear of not being admitted by the health staff [34].Concealment of the disease by the patients can cause the disease to be transmitted to other people.Therefore, disease concealment has to be reduced by providing the patients with the necessary services and gaining their trust.One measure that can be taken in this area is to use HIV patients to provide services to other HIV patients.
The results of this study showed that the patients were having numerous difficulties in terms of receiving health care services.Some of these difficulties included a long waiting period for receiving the services, prevention of people from providing services to HIV-positive patients, and imposing unnecessary travels.Therefore, in some cases, HIV patients had to travel to neighboring cities to receive appropriate services.The patients' experiences of having problems in the community in terms of not being provided with services and traveling to other cities are among the issues not mentioned in other studies conducted in Iran [25,27,30] and other countries [16,31].
Another problem of the patients was the financial constraints when receiving health care services.This category of experiences included high drug costs, costs of medical testing, and the patients' inability to afford the costs.In the study by Nasirian and Haghdoust [30], it was found that the high cost of medical tests was one of the reasons for not referring for treatment.In their study, Shakuri et al., showed that HIV had a devastating effect on the patients' financial status [25].Limited financial resources had been one of the causes of the HIV patients' reluctance to use health services in Vietnam [35].Therefore, in order to prevent the creation of a ring of poverty and disease, necessary measures should be taken to cover HIV patients with insurance, or increase their financial access by providing free services to them.

Patient Experiences After Receiving Services
Psychological stress has been one of the experiences of HIV patients after receiving health care services.Some of the stresses experienced by the patients participating in the study included despair, anger, regret, suicidal thoughts, depression, and feeling of guilt.The stresses experienced by the patients were due to the inappropriate attitudes and the problems encountered when receiving health care services.In the study by Rahmati the HIV patients had experienced

Table 2 . Patients' experiences before receiving services
Expecting proper treatment of health care workersExpect to receive high quality of care Expect to receive the service in a reasonable time Expecting observance of the safety principles by health care workers Expecting spiritual support Expect health care providers to be good confidant.