Results were split into interview results (Results 1) and focus group results (Results 2).
Results 1. Interviews
Twenty-two participants were interviewed (to reach data saturation). Two were excluded from data analysis as they were not able to fully answer the questions and terminated the interview early. Mean interview length was 54.40 minutes (range 23.14-114.35 minutes).
Participant characteristics
All 20 participants were native Spanish-speakers living in Loreto. Average age was 34 (range 19-55). Three participants could not read. Interestingly, four participants identified as ‘female’ gender; a point explored in the discussion. One participant identified as heterosexual despite prior same-sex sexual activity. Ethnicity was excluded; as a category this did not translate or have meaning for participants. Tables 1 and 2 summarise their characteristics.
[Please see the supplementary files section to view the tables.]
Findings
Five key overarching themes were identified from the interviews, listed below. Each theme comprised sub-themes. Participants are identified by ‘P’ and their assigned number after their quotation.
Theme 1: Understanding of HIV
Theme 2: Stigma sequela
Theme 3: Education strategies
Theme 4: Importance of accepting treatment responsibilities
Theme 5: Practical barriers to treatment adherence
Participant correspondence to sub-themes is summarised in Table 2.
(Theme 1) Understanding of HIV
This theme revealed the limited patient and public knowledge surrounding HIV, including common public misconceptions that result in active avoidance of HIV patients.
Incomplete patient knowledge of HIV
All participants understood the importance of condom use in preventing sexual HIV transmission. More advanced understanding of transmission was demonstrated by few participants.
[HIV can spread by] “having unprotected sex, blood transfusion, from one open wound to another, and the use of syringes.” P12
There were distinct gaps in participants’ knowledge. Some mentioned solely sexual transmission. Others mentioned modes that are incorrect, such as transmission “using sharp objects and even through mosquitoes (…)” P14
All participants understood the importance of following treatment, information that seemed to have been provided by the healthcare team.
“The doctor tells me that I can have a long life if I take my medication.” P18
Knowledge of specific complications of HIV was limited, with the main ‘complication’ being that the patients can die. Five participants mentioned immune compromise and feeling ill, but overall understanding of complications was vague. This is an area that could be incorporated into future patient education strategies for early detection of common complications (Theme 3).
“I think that when you do not take the medication, you can have complications like a strong flu that can kill you.” P12
All of the participants agreed with the case used in the topic guide that features a patient stopping ART when they start feeling better. Most either described a similar past experience or knew of friends that had done the same, believing that the virus had been treated. This was often despite being educated by the HCPs. Those that had left the care continuum usually returned after suffering complications.
“I had been taking my medication for a year and I felt very good so I thought I didn´t have the virus [so patient stopped taking ART] (…) six months ago I had serious complications.” P15
Three patients had experience of substituting ART with a traditional medicinal diet or plant-based alternatives, or knew of someone that had.
“A member of my family died from HIV one week ago, he didn´t stick to his treatment because someone else told him to take vegetables, he went to the jungle to drink oje, it is a plant that cleans the blood, then he came back in a very bad state of health and days later he died.” P16
Public misconceptions
All participants outlined common misunderstandings about HIV that they had experienced in their families, communities, or had themselves prior to their diagnosis. Eight participants outlined the misconception that HIV was always an acute, terminal diagnosis. Upon diagnosis many were not aware that there was a treatment for the disease leading to low mood and fear.
“I did not know there was a treatment for this disease and I felt very sad, now I know there is treatment and I feel good.” P9
In some cases, this affected treatment adherence; participants believed that medication was futile if they were going to die anyway and hence rejected their treatment responsibilities (Theme 4).
“A friend told me it does not matter if I take the medication, I’m going to die anyway, that was one of the reasons why I decided to stop the treatment.” P15
Four participants highlighted that many believe those with HIV look ill and malnourished. Some participants reported having unprotected sex if a partner looked ‘healthy’.
[Friends] “were quite surprised [about my diagnosis] because they thought that a person with HIV is a person who looks bad, skeletal and is bedridden, then when they found out they said “wow” because I did not look sick.” P5
Most participants were frustrated at the lack of public knowledge surrounding HIV transmission.
“HIV is the first stage of AIDS, and people do not know that, they think that they are going to get infected just by touching.” P10
Some had experienced beliefs that HIV was limited to certain ‘groups’, e.g.
“Many people believe that this disease is only acquired by promiscuous people, sex workers and homosexuals and that´s not true.” P5
Improvements in public education and public campaigns (Theme 3) could address these misconceptions in the wider population.
(Theme 2) Stigma sequela
A culture of stigma and discrimination was reported. This was split into four sub-themes describing the effect stigma and discrimination had on participants: active avoidance of HIV patients, patient depression, shame as a barrier to diagnosis and treatment, and discrimination at work.
Active avoidance of HIV patients
A culture of avoiding those with HIV was described by 14 participants, leaving them feeling socially rejected. This had an impact on the participant’s social, family and professional lives. Some felt confined to their house. One case featured past discriminatory behaviour from a HCP.
“I felt discriminated when I had an accident, the nurse didn´t want to clean my wound because he knew I had HIV.” P16
“My sister didn´t want to come close to me (…) and every time they [my sister’s children] approached me their mum used to tell them not to do it because I'm sick.” P5
Many participants felt isolated by the lack of understanding in the general population as highlighted in Theme 1, including the misconception that HIV is spread through saliva and touching, depriving patients of kissing or sharing drinks. This, again, could be addressed by improved educational efforts (Theme 3). Some reported family forcing them out of their house and friends moving away.
“One day a boy with HIV asked for a glass of water and my uncle gave him a glass of water and then he threw the glass in the trash and that is not correct because HIV is not spread by saliva.” P15
“I told my niece, then my uncles, and every time I went to ask for help, they would throw me out of their house and I used to leave crying, and my friends do not touch me or talk to me now.” P8
Fear of discrimination led to participants opting to withhold their HIV status; one had not disclosed his status to anyone.
“I lie to people when they ask me what I have because they will discriminate against me.” P8
When asked to think about the experiences of HIV-positive homosexual, bi-sexual and heterosexual men most participants felt these groups shared the same experiences, seeming to interpret the question in a purely physical sense. One participant added that:
“Our society will always prefer heterosexuals and single out homosexuals (…) I had to pretend for many years that I am heterosexual so that my family accepts me.” P5
Eleven participants attributed stigma and discrimination to ignorance and a lack of education, including instances where views had changed once people had received relevant education. This highlights the positive and direct impact education can have on patient’s daily lives and support networks (Theme 3).
“Some of them used to tell me not to get close to their children and they used to tell me ugly things, but when they, the doctors, explained more about HIV their attitudes changed.” P5
Two participants did not report experiencing discrimination. Notably, they had accepted their disease and had family support. Three other participants believed discrimination had reduced.
“Many people are aware now [of HIV] and they don´t look at you badly or point you out because of the disease that you have.” P13
Patient depression
A diagnosis of HIV had severe psychological implications for 14 participants. Experience of low mood was often stated as “depression”. Seven participants mentioned feeling suicidal; one had acted on this:
“When I was alone I used to think a lot about it [HIV diagnosis] and I tried to kill myself.” P3
Education, the help of the clinical psychologist and family support were important factors in overcoming low mood. Participants stated the importance of education upon diagnosis, as most participants’ poor mental health improved after realising there was effective treatment.
“The first few days I wanted to kill myself, but thanks to the psychologist, I'm fine now.” P8
Participants described feeling better emotionally once they were taking the medication.
“When I started taking the treatment I got up and I felt good and I had more desire to live.” P13
Shame as a barrier to diagnosis and treatment
Shame was identified as a barrier to care by 12 participants. This affected all aspects of the HIV care continuum: diagnosis, care seeking, clinic attendance and adherence to treatment. Participants stated that fear of disclosure impacted on HIV transmission in the community.
“People are afraid of rejection and that's why they don´t say anything and they have unprotected sex (…) my partner didn’t tell me he had the disease until I discovered it by myself.” P5
Testing was typically done when participants had symptoms, or had suspicions about their partner’s fidelity. Only one participant went for routine tests. This was avoided by others because of fear and shame.
“People are afraid or ashamed and they do it [a HIV test] when they feel poorly, or when they want to know if they have HIV.” P8
Once diagnosed, shame was described as a barrier to care access and remaining in treatment. Participants did not want to be seen at the HIV clinic or taking daily medication.
“I was afraid and embarrassed, I didn´t want people to see me in the HIV area when I started the treatment.” P15
“The majority of people feel ashamed and that´s why they die.” P16
Shame informed why some chose alternative treatment options, a path made more attractive by the widespread belief in alternative Amazonian medicine described in Theme 1.
[I had a] “friend who told me that he was ashamed to go to the clinic and that is why he was following a plant based treatment (…) it's been almost three years.” P5
Two participants did not report feeling ashamed of their diagnosis. They had a high level of disease acceptance, family support and disregard for those that might discriminate.
[Discrimination does not influence my disease control] “because I don´t give it too much importance (…) they laugh at me, but I don´t care.” P7
Discrimination at work
Four participants shared stories of being discriminated against at work; three reported discriminatory testing requirements in low transmission risk occupations. A negative result was needed to apply for/remain employed in these cases. Some reported experiencing verbal discrimination. These experiences had negative psychological effects:
“I am a supervisor and I called over an employee and she discriminated against me for having HIV in front of many people, it made me feel very bad.” P5
“When you apply to a company they ask you for a HIV test (…) [and if positive] they do not accept you at work (…) I felt depressed.” P10
Work had a detrimental effect on disease control. Participants feared revealing their HIV status at work so could not take the time off, and/or had to travel away for work, which impacted on clinic attendance and became a practical barrier to treatment adherence (Theme 5). Consequently, few participants had jobs.
“I had to travel for work and that's why I left [treatment for six months].” P20
Contrarily, HIV did not always interfere with professional life; one participant had been actively encouraged to seek treatment by his colleagues.
“My bosses know that I have HIV and they send me to the hospital to receive my medication. I am a cook assistant.” P17
(Theme 3) Education strategies
Most participants described the need for improved public understanding, particularly in areas of HIV transmission and treatment. Participants believed education could aid HIV prevention, disease control and reduce discrimination.
Need for more accessible education
Participants recommended improved public education strategies to reduce the HIV epidemic.
[Local men are at risk of HIV] “because they do not have enough information and they are not aware that they should use a condom.” P19
This was also considered important in improving access to care:
Researcher: “What can be helpful for men who have sex with men in accessing care pathways?”
“To take care of themselves and attend the small group educational meetings about this topic.” P2
Education provision when patients were diagnosed was mentioned as important by 10 participants, particularly for psychological health, early acceptance and disease control.
“I got depressed but after receiving the treatment and the visits to the doctor I started to feel much better.” P2
It was acknowledged by seven participants that public education improvements can reduce stigma and discrimination (Theme 2). Some stated that this was important in improving disease control for patients.
[To help HIV-positive men who have sex with men access freely provided care pathways there needs to be] “total awareness, but not only to the men who have sex with men community, but also to the whole society because discrimination and rejection affects many.” P5
Participants stated the need for more education through alternative routes in addition to school, including: small group educational meetings, local events and providing a specific place to acquire information. This is particularly important as some people do not attend school in Loreto.
[If I wasn’t diagnosed] “I wouldn´t have known anything about HIV (…) I never went to school.” P18
Participants described that those in communities and villages faraway from Iquitos are at higher risk of HIV due to reduced information access and provision, resulting in unsafe sexual practices. This group also faces difficulties in accessing treatment due to their remote location (as described in Theme 5).
“People who are far away from the city are more at risk of HIV infection [than those in the city] because they don´t have information about the topic, some do not even know what HIV is.” P12
Five participants however stated that education had reached a sufficient level in Loreto
“There is enough education. In secondary schools there are courses about diseases (…) not only here but in the villages too, they carry posters and talks. I always participate in small group educational meetings.” P11
Engaging young people
Seven participants believed it was particularly important to educate young people. School education was identified as important, providing opportunity to challenge stigmatising beliefs and prevent future spread of HIV. Most were unsatisfied with the HIV education that they had received, wishing it had gone deeper than solely mentioning safer sexual practices.
“More information should be provided in schools, but not only in secondary school, but also in primary school, teaching children how can it be spread, prevention, and how to treat a person with HIV. I think that young people would learn to respect from an early age and there won´t be much discrimination.” P12
Educating young people that are involved in ‘party culture’ was acknowledged as important in prevention.
Some participants stated that parents give their children too much ‘freedom’, which can lead to risky behaviours and HIV transmission. Improvements in parenting were identified as key to changing young people’s behaviour.
“There is not enough education. I think education should start at home, if parents teach their children from an early age about HIV, children would grow up knowing how to take care of themselves.” P13
Two participants thought that there was sufficient information for young people at school and through social media. They believed that young people do not seek out available information and consider the consequences of unprotected sex.
“There is a lot of information on the internet, in social media. I think it is [the spread of HIV] because of parties and alcohol, young people don´t measure the consequences and they have unprotected sex with girls, and homosexuals.” P16
(Theme 4) Importance of accepting treatment responsibilities
The importance of personal acceptance in improving and maintaining disease control was a trend identified throughout the interview data. Adopting a new lifestyle and support from family, friends and the hospital aided patient acceptance.
Personal acceptance
The importance of personal disease acceptance was discussed in nine interviews, regarded to be central in: maintaining disease control;
[I attend clinic] “because it is my responsibility to come and stay in treatment.” P10
the participant’s psychological wellbeing;
“No [I am not worried about my disease], I got diagnosed 13 year ago and I have accepted the disease.” P16
and – as earlier – overcoming shame as a barrier to treatment (Theme 2).
Participants stated that the consequences of non-acceptance resulted in a lack of care-seeking behaviour and poor treatment adherence.
“I think that it´s one of the main problems, people do not accept their diagnosis and therefore make decisions that endanger their health.” P5
Adopting a new lifestyle
A culture of alcohol-use, parties, unprotected sex and commercial sex in Loreto was described by all participants. This was considered responsible for the spread of HIV in men who have sex with men, with one participant describing this as the “lifestyle” of men who have sex with men.
“In bars, men offer money to homosexuals in exchange for sex and they accept. They sell their bodies for [US] 50 cents.” P17
Once diagnosed, participants stated that people with HIV had to choose whether to adopt a new “responsible” lifestyle and adhere to treatment, or continue a “disorganised” lifestyle and lose disease control. This concept was expressed by 17 participants. A “responsible” lifestyle as advised by HCPs included: avoiding alcohol and drugs, going to sleep at a reasonable hour, taking medication on time and eating healthily.
[HCPs] “forbid us to consume alcohol, drugs, smoke, even a lot of sleeplessness - it´s bad for us because we do not have a strong immune system.” P5
“I used to forget my pills and I abandoned the treatment for one year, because I liked to go to the parties and drink with my friends.” P18
One participant believed that these lifestyle changes had had a positive influence and seemed thankful:
“Now I have an orderly and healthy life style, I don´t sleep late or drink as I did before, I am very careful and hygienic with food (…) HIV intervened in a positive way and now I have a better life style.” P12
This all-or-nothing health belief seemed to adversely affect adherence in some cases, with respondents considering leaving the treatment in order to resume their social life.
“Sometimes I want to leave the treatment because of my friends, to go to parties.” P7
Support structures
The importance of support systems in HIV control was highly regarded by 18. Family support was described as particularly important in achieving adherence.
“If it were not for them [family] I wouldn´t take my medication and I would already be dead (…) I came to Iquitos to receive the treatment because my family supports me here.” P6
Family support was important for psychological well-being and dealing with discrimination. Friendships were also described as a useful support system to a lesser extent. When not supported, patients were emotionally affected; one participant cried during the interview.
[I have experienced] “bad comments of people, my neighbours and discrimination in general, but I do not care because my family love me” P6
[On diagnosis] “I told my dad, he lives with his partner and when she found out they told me to leave the house (…) they reacted bad.” [Participant starts crying] P20
The psychological support, motivation and education from the medical team was viewed as important throughout the interviews. The psychologist was cited as particularly helpful in providing facilitators to care.
“I feel bad, I want to cry because of the rejection, but I have the help of the psychologist.” P8
Participants benefitted from taking their family to be educated at the clinic (Theme 3). This commonly dispelled misconceptions that family and friends had, and enabled them to support the patient (Theme 1).
“I decided to bring her [my sister] to the hospital, so the doctor would inform her about HIV and then she changed, now I have a normal life, in my family, work and with friends.” P5
Religious belief and support from a social worker were central for two participants remaining in care.
(Theme 5) Practical barriers to treatment adherence
Individual barriers to treatment adherence included travelling to clinic and initial side-effects of ART.
Travelling to clinic
Six participants outlined the difficulties of travelling long distances from Amazonian communities to reach Iquitos in order to receive monthly treatment, impacting on treatment adherence. Some found it difficult to afford travel costs.
“Yes [I am concerned about my health], because I´m not going to have money to go to the clinic and have my appointments with the doctor.” P18
Some participants mentioned difficulties taking time off from work to travel long distances to clinic, resulting in people leaving the treatment.
[Leaving ART treatment] “is common in some people, because they live far away from the clinic, they don´t live in Iquitos and it is very difficult to leave our work to come to pick up the medicine.” P6
One participant suggested decentralisation of treatment services to reduce travel difficulties.
[Some people’s treatment is delayed] “because of the distance, that is why the treatment must be available in all hospitals.” P11
Side-effects of ART
A quarter of participants described the severe initial side-effects of ART as a common factor behind patients leaving the treatment.
“Many times, I wanted to leave the treatment because of the side-effects it caused to me, but I had to get used to it.” P12
Understanding that initial side-effects would subside facilitated treatment continuation. This information had been received from the doctor in all cases.
“The first two days the treatment hit me very hard (…) but the doctor told me that they are positive reactions for us, that’s how our body should react.” P5
Results 2. Focus Group
Participants
All five HCPs that were approached agreed to participate in a focus group. Two could not participate as their clinical work that overran leaving a final focus group of three.
Participant Characteristics
Participants were current employees at the RHOL HIV department. Due to identification risk in a small sample their specific roles are not published. Staff all had experience (ranging from 1-6 years) of working with men who have sex with men HIV-positive patients. The mean average age was 45. All were native Spanish-speakers (characteristics Table 3).
Findings
Two themes were identified from salient features of the group discussion. Participants were coded ‘FG’ + an assigned number for quotation. The theme ‘ART treatment avoidance’ was separated into sub-themes. Focus group duration was 30 minutes 29 seconds.
(Theme 1) ART treatment avoidance
Participants had observed multiple barriers affecting patient access and adherence to treatment, including: stigma and discrimination, difficulties in accessing treatment, taking plant-based medicine and social barriers to care.
Stigma and discrimination
The clinician explained that discrimination is so common and wide-spread that it has become part of Loreto culture, perpetuated by a lack of information.
[Discrimination is] “basically cultural, for example, when I see the patients, the family comes and they ask me doctor, can we talk to him? Or will he be able to eat with us? You see? it is the lack of information about the disease.” FG3
Participants explained that discrimination in Loreto stems from poor education. They described that the public are unsure of HIV transmission, with beliefs that the virus can be transmitted through touching or talking, leading to patient isolation and emotional stress.
“If your neighbour knows [you have HIV], they do not want to talk to you anymore (...) I had a patient who came devastated because he could not even hug his children, because some people told his wife that he can infect them.” FG3
They stated that patients become discouraged in controlling their disease after experiencing discrimination.
“Patients do not access the healthcare system, they know their diagnoses, but they are afraid, and ashamed.” FG2
[Patients] “do not accept to come and risk being seen by someone that knows them (…) there are people who become discouraged, they do not care if they die.” FG3
It was stated that some patients were severely affected by discrimination, resulting in cases of depression and suicide.
“This kind of discrimination affects the patient psychologically, they think that the treatment is not worthy, they get depressed and they commit suicide.” FG2
The participants seemed frustrated that there is information available online if patients or the public wished to find it, but they do not engage. This results in the continuation of widely held discriminatory beliefs and patient isolation.
“There is a lot of information on the television and the internet, but people do not read, they do not educate themselves. That is why they have these wrong ideas and they are isolated.” FG3
Access to treatment difficulties
The hospital staff stated that patients receive high quality care from their team at RHOL, however care at community health centres was of low quality with long waiting times.
[A major barrier to men who have sex with men accessing care is] “the quality of services (…) there are some situations of abuse to the patient in health centres, for example: making them wait a long time, the type of treatment they receive.” FG3
The distance needed to travel and transport costs to get to hospital was reported as a barrier to care.
“Sometimes they do not have two PEN [equivalent to 60 US cents] for their transportation and that's why they do not come.” FG3
This problem appeared worsened by the limited number of regional ART providers.
“There are many health posts here, but few are authorised to provide the medication.” FG3
Alternative medication
The focus group stated that alternative traditional plant-based medicines from the Amazon rainforest was often chosen in place of, or in conjunction with ART. This information was not always voluntarily communicated by patients and was seen by HCPs as part of Loreto culture.
“There are some patients who give up on treatment for two or three months and always have illogical justifications (…) and many times they do not return (…) it's a cultural aspect, many people take natural medicine, but they don´t say it.” FG3
Researcher: “What kind of natural treatment have you seen people use?”
“Garlic sacha [Mansoa alliacea, garlic of the jungle], cat´s claw [Uncaria tomentosa, tropical vine bark], catahua [Hura crepitans, possumwood], mururé [Brosimum acutifolium, tamamuri bark] (…) there are many other plants (…) then they return in poor conditions.” FG1
Social barriers
Poverty, lack of work, alcoholism and drug addiction were considered barriers to treatment adherence. It was mentioned that some employers required a negative HIV test for acceptance, despite this being illegal.
“Some employers do not accept them if they are HIV positive. For example, two days ago a professional patient came, he was already removed from two jobs, even though he is a good professional, I told him [he could take legal action].” FG3
(Theme 2) Community education improvements
Staff described education as important in reducing stigmatising views and misconceptions. Educating families to gain their support was deemed particularly important for patients’ psychological wellbeing and treatment adherence.
Participants believed lack of education was behind risky behaviours common in Iquitos, particularly in the younger population.
[In Iquitos] “there is a lot of debauchery, many parties, you see that very young men and women, are in states of alcoholism and drug addiction and that happens because of lack of education.” FG3
The allied health professional highlighted that some rural communities cannot access HIV information, perpetuating misconception and discrimination.
“There are many places, communities where people do not know what HIV is because there is no education, television, and that is why discrimination occurs and they decide to separate family members.” FG2
Participants conveyed the need for improvement in educational programmes, which community agents are responsible for. Particularly, community health workers were highlighted as providing incorrect information and misleading communities, leading to confusion surrounding HIV.
[Community health workers] “don´t go to the communities, they do not give informative talks like before.” FG2
An annual plan to improve prevention of common infectious diseases was proposed, focussing on community care workers. These information providers should be proficient in teaching and providing correct information. Political action could make an education campaign more impactful.
“The establishments or community care workers should have an annual plan of projects for the communities, they should provide information about diseases such as HIV, tuberculosis, etc. Community care workers are responsible for educating, they must be people who know about the subject and they must teach with pedagogical methodology.” FG3
Parental education was deemed important to ensure families could support HIV-positive children/relatives and educate their children themselves.
“The family support is very important, people who receive support from their families overcome it [HIV-related depression] easily.” FG3