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Abstract

Introduction: HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. Methods: We interviewed 40 YLWH, 20 caregivers, and 39 subject matter experts (SMEs); transcripts were analyzed by HK and EG, with emerging themes confirmed by JA and AC. Results: All categories of participants identified the impacts of stigma on YLWH research participation, suggesting implementing privacy protections, considering recruitment locations carefully, and developing supportive relationships with YLWH. SMEs suggested that YLWH experience uniquely high risks from stigma due to the compounding effects of developmental challenges and transitionary life period. Accidental HIV disclosure and subsequent stigma were identified as a risk of research participation; some viewed the creation of community through research as a benefit. Conclusion: Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.

Keywords

HIV adolescents youth stigma research bioethics Kenya

Introduction

Across 40 years of the HIV epidemic, research has shifted an HIV diagnosis from a death sentence to a manageable, chronic illness. Perinatally infected youth living with HIV (YLWH), who must maintain lifelong treatment, still experience excess HIV-related morbidity and mortality despite the advent of life-saving antiretroviral therapy.^1,2 YLWH have unique needs in both care and research settings, as they transition from childhood to adulthood, navigate the shifting involvement of caregivers in their care, and come to terms with their own HIV infection in contexts that may still include HIV-related stigma and discrimination.^3,4 Due to these unique experiences, research involving YLWH is still urgently needed to enhance youth-specific HIV care,^5,6 which has been demonstrated to improve care outcomes.^6,7

Studies conducted in Kenya demonstrate that HIV-related stigma is omnipresent in the lives of YLWH, demonstrated by reports of stigma in community and school settings, and at home.^2,8,9 Anticipated and enacted HIV-related stigma can lead to adverse mental health outcomes.^8–10 Experiences with and fear of HIV-related stigma negatively impact HIV care initiation, treatment retention, and medication adherence and introduce significant barriers to the successful treatment of YLWH.^11,12 Over time, HIV-related stigma can contribute to the excess morbidity and mortality experienced by this vulnerable group. YLWH employ multiple strategies to avoid HIV-related stigma, including choosing not to disclose their HIV status to family and friends, avoiding taking medications in front of others, and attending clinic appointments discretely or farther from home to avoid being associated with HIV care.^8,11,12

Although the impacts of HIV-related stigma on clinical engagement and outcomes are well studied,^13–15 it is not fully understood how it affects the ways in which YLWH chooses to participate and engage in research. YLWH must navigate the study's recruitment requirements, caregiver involvement in the process, and assess study-related risks and benefits, all of which may be influenced by experiences of HIV-related stigma and discrimination. Research on the perceived risks and benefits of research participation among YLWH in Kenya has illustrated that risks are not described as being of great concern to participants, despite pervasive fears of stigma and discrimination.^8,16–19 Similar stigma-related impacts may lead to barriers to YLWH participating in research or increase the associated risks, placing an even stronger emphasis on protecting the confidentiality of their HIV status.

In order to ethically and successfully involve YLWH in research, it is critical that we understand the ways in which HIV-related stigma impacts engagement in research from recruitment of YLWH, enrollment and consent, and engagement in research activities. This qualitative study aims to explore the impacts of stigma on identifying and recruiting YLWH for research, their needs throughout the research process, and the stigma-related risks and benefits of YLWH participation in research, by eliciting the perspectives of YLWH, their caregivers, and subject matter experts (SMEs).

Methods

Study Setting

This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH), an academic collaboration between Moi University School of Medicine, Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya, and a consortium of North American universities led by Indiana University.^20,21 AMPATH provides care for more than 7000 children and YLWH and includes the Rafiki Center for Excellence in Adolescent Health, one of the largest adolescent health centers in Africa.

This study is part of a broader, ongoing cohort study (“parent” study).²² A cohort of YLWH was originally assembled in 2010 to 2013, followed by 2 completed longitudinal studies, and is currently participating in a third study. This series of studies longitudinally follow youth perinatally infected with HIV as they grow into adolescence and young adulthood in western Kenya, examining the associations between ART adherence, treatment failure, and the development of HIV drug resistance (HDR). The studies collected blood samples for viral load and drug resistance testing, which informed some of the interview questions for the present qualitative study. Eligibility for the original parent study was: (1) perinatally infected with HIV, (2) ≤14 years of age at enrollment, (3) on or initiating first-line NNRTI-based ART regimens, and (4) receiving HIV care at an AMPATH clinic. Participants were initially recruited during routine clinic visits, and none refused participation.

Study Design

This study enrolled 4 categories of participants: (1) YLWH who are currently enrolled in the parent study, (2) caregivers of YLWH enrolled in the parent study, (3) YLWH who have not participated in the parent study, and (4) SMEs.

The interviews covered 2 domains: (1) identifying, enrolling, and protecting YLWH in longitudinal clinical research, and (2) collecting, testing, biobanking, and sharing/future use of biological specimens. Domain 1 probed issues related to the age of consent and assent; how research involvement changes from childhood through adolescence and into adulthood; involvement of caregivers in research; protections against accidental disclosure of HIV status; and considerations related to research with a population with low socioeconomic status, high orphanhood, and living with HIV. Domain 2 probed perspectives on consenting for biological sampling; biospecimen storage practices; identifiable information linked to samples; the use of samples for future research studies or for public health surveillance related to HDR testing; responsibilities for providing testing results; and sharing of any potential profits emanating from future work. This paper discusses the stigma-related considerations arising from both domains 1 and 2.

Sampling and Recruitment

Youth participants involved in the parent study were recruited through random sampling from scheduled study and clinic visits for the parent study and were included only if they were (1) between 10 and 24 years of age, (2) aware of their HIV status, and (3) enrolled in the parent study. Caregivers were similarly recruited through random sampling from scheduled visits. Caregiver participants were eligible if they were (1) a caregiver of a YLWH enrolled in the parent study, (2) 18 years of age or older, (3) aware of the youth participants’ HIV status, and (4) knowledgeable about the care and research participation of the YLWH. Youth who were not enrolled in the parent study were randomly sampled from the Rafiki Center of Excellence in Adolescent Health, a local clinic providing HIV care to adolescents. Youth were eligible if they (1) were between 10 and 24 years of age, (2) were aware of their HIV status, (3) receive HIV care at the AMPATH/MTRH Rafiki Center of Excellence for Adolescent Health, and (4) were not enrolled in the parent study. Youth participants were selected purposively for equal gender groups. Subject matter experts were identified by the research team as experts in community leadership, healthcare provision, research, ethics, and policy. SME participants were eligible if they were: (1) 18 years of age or over and (2) determined by the study team to be an SME in one of the following groups: community leaders (village elders and chiefs), members of adolescent or community advisory boards, healthcare providers, members of local or national IRBs, researchers from the AMPATH Research Network and other institutions conducting research with YLWH in Kenya, research laboratory leadership, and government or policy representatives.

Data Collection and Analysis

Two trained Kenyan facilitators (1 male and 1 female) conducted interviews in either Kiswahili or English, depending on the participant's language preference. Facilitators were experienced in qualitative interviewing, trained in study protocols, and had no prior relationships with the participants. Interviews with adolescents, caregivers, and the majority of SMEs were conducted in private rooms in the clinical setting; some SMEs were interviewed in their private offices, and IRB members were interviewed virtually via Zoom. No field notes were collected during interviews and no external observers were present. Interview guides were tailored to probe topics relevant to each participant group. Interviews were audio-recorded, transcribed, and interviews conducted in Kiswahili were translated into English for analysis. Deductive thematic analysis was led by 2 researchers (HK and EG) based on an initial coding framework derived from the interview questions and reviewed by JA and AC. The researchers independently extracted data using the qualitative software program NVivo, version 12.²³ The same investigators (HK and EG) led the inductive analysis and extracted emerging themes independently before comparing results and reaching a consensus on relevant themes.

Definitions

HIV-related stigma is commonly defined as negative attitudes and beliefs about people living with HIV, which reduce an individual from a “whole and usual person to a tainted, discounted one.”²⁴ Although stigma is associated with attitudes and beliefs, discrimination refers to the behaviors resulting from these beliefs and is often described as an end result of stigmatization, or “enacted stigma.”²⁵ Stigma is often internalized by people living with HIV, leading to “self-stigma” in which one shares negative beliefs about their own HIV status.²⁶ Direct impacts of stigma or the anticipation of stigma often include fear of disclosing one's HIV status to others and of taking HIV medications in front of others, often leading to physical and clinical effects.²⁷ Impacts of stigma may also be indirect, such as increased mental health symptomology.²⁶

Ethical Approvals

This study was approved by the Icahn School of Medicine at Mount Sinai Institutional Review Board in New York, NY, USA (study number 20-01177), and the Moi University/Moi Teaching and Referral Hospital's Institutional Research and Ethics Committee in Eldoret, Kenya (approval number 0003689). Additional approval was received by the National Commission for Science, Technology and Innovation (NACOSTI), a Kenyan government research regulatory body (reference number NACOSTI/HW/3/1/16). Participants were excluded if they were unable to provide written informed consent, or in the case of those under 18 years of age, the inability to provide assent themselves and caregiver consent. A detailed, standardized informed consent/assent form written in either Kiswahili or English was read aloud with adequate time for questions and clarifications, and written consent/assent was obtained by trained, bilingual research assistants with experience in recruiting children for research.

Results

Participant Demographics

We enrolled 99 participants in the study in order to ensure saturation; 40 YLWH, 20 caregivers, and 39 SMEs: 5 community advisory board (CAB) members, 10 health care providers, 5 village chiefs, 5 Mtaa leads (community leaders), 5 IRB experts, 5 clinical researchers, 3 social science researchers, and 1 laboratory lead. The majority (52%) of all participants were female; 50% of YLWH were female (median age 17.5), 70% of caregivers were female, and 44% of SMEs were female.

HIV-Related Stigma: Perspectives of YLWH, Caregivers, and SMEs

Participants cited HIV-related stigma as a critical issue impacting YLWH, which subsequently impacts their involvement in research (Table 1). Many participants identified that, in general, YLWH is at a uniquely high risk of experiencing stigma, as they are at a transitionary life stage in which they further develop identities, seek community and peer approval, and navigate disclosure of their HIV status to peers. They described how youth, who are just beginning to establish their identity or careers, do not want to be defined exclusively by their HIV status. Moreover, during the developmental stage of adolescence, youth place high importance on their peers’ opinions and approval, making rejection or discrimination due to HIV status all the more devastating. Participants perceived YLWH under 18 to experience greater compounding effects of stigma due to a greater fear of stigma and developmental challenges associated with this period of adolescence, as they struggle to establish autonomy, particularly in HIV care management, and their own identity. Some also suggested that YLWH under 18 may not have fully accepted their status and are thus more likely to accidentally disclose their status to others, which may lead to increased stigmatizing experiences.

Table 1.

General Perspectives of YLWH, Caregivers, and SMEs on HIV-Related Stigma.

Theme	Subtheme	Illustrative Quotes
Relationship between age and stigma experiences	Younger PLWH may have more fear of stigma	“Old people when they reach a certain age, they can say that they are sick, but the youths can’t because they are trying to hide so that they cannot be harassed by the society then intimidated” –SME community leader, male “Majorly, under 18 years deal with esteem issues or the idea of stigma. I think that affects both the younger and older people. However, it is majorly on the younger people.” –Above 18, female adolescent not in parent study
	Younger PLWH deal with stigma alongside developmental challenges	“I think they [age and stigma experiences] are inter-related there, they are inter-related because HIV is a very tricky subject for young people who have it so a lot of them are likely to have, even adults have self-stigma so you wonder how much more that is for the young people because they are still dealing with these developmental issues and then HIV is in the mix.” –SME clinical researcher, female
	Younger PLWH don’t know or haven’t accepted their status	“It is harder for the younger ones because they do not even know their status. They will question why they are taking medicine and their peers are not. And the other children will also start asking why the child is taking medicine.” –Caregiver, female “The young ones are still in denial. They are still not ready to say it out or are still questioning their parents why they did so and yet it's not their parents it's just something that happened and they have to accept it.” –Above 18, female adolescent not in parent study
	YLWH under 18 may accidentally disclose	“As for the little ones, they are still young and they don’t know how to hide their secrets, they end up disclosing what is not supposed to be known.” –Caregiver, female
Compounding effects of stigma	Mental health challenges	“I think the important thing to consider is that they are a vulnerable group and then in terms of them being young being underage and then in terms of them having a chronic condition – that is potentially stigmatizing. So two important things to think about and also we know that young people living with HIV have very high rates of mental health issues and substance use so they are vulnerable on many levels.” –SME clinical researcher, female “The other thing that happens because of the stigma and the discrimination or at times they may develop issues such as depression, they may develop mental health issues…” –SME health care provider, male
	Compounding disease burden	“…so there is that stigma associated with HIV and then also the disease burden, taking medication, frequent clinic visits, so when you are a young person you would like to enjoy life to the fullest.” –SME health care provider, female
	Impacts on health and wellness	“HIV in particular is still a stigmatized condition… As you know adolescence is a stage where people want to be known, they want to be in a certain community, imagine a lonely adolescent and the impact it can have. The stress can result in depression and it is even worse for a child that has HIV. They can start disregarding taking their medication and their clinical visits. Some might start skipping school and in the long run it affects their life.” –SME IRB member, female
	Feelings of inferiority	“…we have things like stigma, if they are stigmatized then it is difficult for them to say that they are willing to participate because if you separate them and put them into two groups, some of them may feel inferior depending also on the level of exposure, level of education, and their environment.” –SME health care provider, male
	Discrimination and isolation	“So I think the young people with HIV are vulnerable to stigmatization, they are vulnerable to isolation based on people who stigmatize their condition and it messes up their whole career, you are stigmatized at school or your social circles and later on in your career then you basically isolated for life.” –SME IRB member, male “Maybe if one is found with the virus while the other is not found with it that will make them have a conflict then their friendship ends.” –Below 18 male adolescent, not in parent study
	Impacts medication adherence	“The other thing that can make them to be more vulnerable is that majority even me included, we don’t want to disclose that we are using ARVs and for the youth they are in groups; they might have planned for party and of course they will not carry drugs with them and thus they will skip medication.” –Caregiver, male “Yes, sometimes we forget to take the drugs, something like that, but sometimes you get to where there are many people, so you have to postpone the time of taking your drugs.” –Below 18, male adolescent in parent study
Addressing stigma	Beginning with community/home	“Leaders in their areas and churches should be involved so that it can begin from the homes. So that they know that is part of life. A small percentage agree with that is how life is. There are those who fail to come to terms with their status due to stigmatization. And also, there are those who fail to reveal their status to their partners. The community should also accept and normalize people living with people who are HIV. It should begin from the grassroots.” –SME community leader, male
Addressing stigma	Conduct research with HIV-positive and negative youth	“When both are participating it's okay, there is no problem. It will be okay because all of them will be seen to be working. No one will be stigmatized.” –SME chief, male

Abbreviations: PLWH, people living with HIV; YLWH, youth living with HIV; SME, subject matter expert.

Participants identified compounding direct and indirect effects of stigma on mental health, such as symptoms of anxiety, depression, or beginning substance use, compounding the discrimination and isolation from peers, family, and community members. Participants also described the physical effects of stigma; fear of anticipated stigma related to one's HIV status leads YLWH to hide and delay medication-taking, and then nonadherence can result in viral nonsuppression and the development of drug resistance. One SME described that the effects of stigma are interrelated with mental health and wellness; the mental health challenges associated with stigma may impact youths’ clinic and school attendance.

Few participants brought up suggestions to address stigma, but those who did suggest broadly that community leaders should help normalize living with HIV, and that research should be conducted with both HIV-positive and HIV-negative youth participants.

Stigma-Related Considerations for Engaging YLWH in Research

Participants recommended that researchers consider the extra sensitivity, care, and support needed by YLWH following lifetime experiences with stigma; YLWH may face barriers to participating in research due to fears of accidental disclosure and stigma that may arise from being associated with HIV research (Table 2). The need for adequate protections against research-related risks such as stigma and discrimination, and protecting the confidentiality of their HIV status were issues identified by YLWH and caregivers. YLWH and SMEs most commonly cited privacy, youth-friendly amenities, and a trusting relationship with researchers as critical needs to help mitigate the impacts and risks of stigma in a research environment. Participants explained that protecting the privacy of YLWH is critical to not accidentally disclosing one's status and the subsequent increased risk of YLWH experiencing stigma. Youth-friendly amenities and rapport with researchers were suggested as needs in response to the stress caused by prior experiences with stigma, and the need for YLWH to feel comfortable sharing personal details.

Table 2.

Stigma-Related Needs and Considerations for Engaging YLWH in Research.

Theme	Subtheme	Illustrative Quote
Important issues for researchers to consider when involving YLWH in research	YLWH may require sensitivity due to experiences with stigma	“…the other thing that you must consider is that they are HIV positive, so HIV positive they are stigmatized, and if you were to include them in any research you have to look at what the HIV has done to them throughout the lives, in terms of stigma in terms of treatment and all that” –SME clinical researcher, male “…and then I think other issues would be just being able to respect their perspectives some of them have a lot of self-stigma still and just being sensitive to what they are going through as young people living with HIV.” –SME clinical researcher, female
	Fear of stigma may prevent participation	“There is fear among them because they are afraid of research being done on them and being tested because of stigmatization. HIV/AIDS is still a threat and people have not yet accepted that it is normal.” –SME community leader, male “Some of them might not be willing to come and participate in HIV research because of the stigma at that stage of identity.” –SME clinical researcher, male
Important issues for YPWLH and families to consider when participating in research	Protections against risks	“As the family we should follow them to ensure they are not discriminated and they are not lonely” –Caregiver, female “I would like to know if there are any hidden secrets so that my child does not complain that their information has leaked.” –Caregiver, female
	Disclosure status	“Personally, I think that person should consider maybe their health because maybe the person doesn’t want to disclose anything about their health. So, they should think first about whether they want to disclose their health or not.” –Below 18 female adolescent not in parent study
	Confidentiality	“As you know, stigma is still there and stigma will come in the event the information—okay let me put it this way, in the event that private information is leaked to people who are not supposed to know about certain information being given out.” –Above 18 male adolescent not in parent study
YLWH needs in research settings	Privacy	“When identifying them, young people hide their HIV status they always tend to portray that everything is normal, but you should always consider that young people would like to have their life not exposed. You should always consider going to them privately knowing that if you go to them openly, they will not disclose their status but once you go privately, then try to talk to them they’ll be able to release their heart and agree that they are HIV positive” –SME community leader, male
	Youth-friendly amenities	“ …there could be systems like a TV set, when they are used to come there they’ll not have that mentality of they are coming to take their drugs but they are coming to our clinic so when they reach there they’ll see a TV that will take out their mind and stuff like depression and stigma will get out of their mind.” –SME community advisory board member, male
	Trust between researchers and participants	“The first thing is you know in the community – with health issues one can be nervous when asked about such so it needs confidentiality and trust so that one can open up to you without having the fear that he will be sought in the village. Confidentiality and trust.” –SME chief, male “They should not go directly, to make friendship with that person so that the moment you ask any questions he or she can answer it confidently and can tell you the truth about it.” –Above 18 female adolescent not in parent study
Use of samples and data	Concerns about identifying blood samples	“If my details are written directly on the test tube, I would be concerned because I do not know where it is going, and if my details are splashed on the test tube it might end up to a relative or a friend who knows me personally and does not know my status, so I would be concerned in that case.” –Above 18 male adolescent not in parent study “Obviously when you indicate the name in the specimen, people will know your status and wherever you go people will discriminate you or just start discussing about you don’t know how it happened.” –Above 18 female adolescent not in parent study
	Concerns about corruption	“I think one of the risks of storing blood with participant's information, with the current society we have persons with different values. The issues of corruption; you find that so much is compromised as a result of corruption. If at all a researcher somewhere who participated in the analysis and storage of that blood sample, if they want to jeopardize or cause harm to the participant; or when there is a person who has connection with the researcher who wants to tarnish the name or act in a manner that can harm that particular person; then that person can easily be influence through corruption to do otherwise.” –SME Chief, male “You might think [external organizations] have another hidden aim” –Caregiver, female
	No concerns about confidentiality	“I don’t feel that there is any concern because the doctors conducting it have been taught how to keep it confidential…” –Caregiver, female Interviewer: “What if the sample is labelled your name?” Respondent: “I will not be worried even if I am HIV positive even if someone know my status, I will live my life.” –Caregiver, female
Sharing stories about HIV research	Fear of sharing stories	“I haven’t met with friends who have participated or talking about—most of them are afraid to talk in front of people about research on HIV.” –Above 18 male adolescent not in parent study
Researchers responsibility to protect YLWH from stigma	Educate communities	“The researcher should give the right information to the community, the people they live with and the people who might get hold of this information. Most of the times they will tend to understand and discrimination will be minimal” –SME health care provider, male
	Maintain confidentiality	“Some youths fail to participate because they fear that their information could leak to others. The researchers should keep the information confidential.” –Caregiver, female “Majorly the idea of anonymity. Most people don’t like their status of them living with HIV been out there. Being able to keep that confidential and respecting their privacy is something that would be a huge deal.” –Above 18 female adolescent not in parent study
	Offer support and kindness	“They should be handled with care because some may be traumatized or they could have undergone through stigma. They should handle them politely.” –Caregiver, female “Support them. It is very hard for someone to come here and give their information, it is very hard. And it is very hard for someone to accept themselves, my request is that they work together with them, they understand the problem they pass through while using medicine.” –Above 18 female adolescent in parent study

Abbreviations: YLWH, youth living with HIV; SME, subject matter expert.

Regarding the storage and sharing of biological samples for research purposes, participants expressed fears that research staff, other participants, or community members might see a participant's name on a sample and stigmatize them for their HIV status. Some SMEs and caregivers expressed concerns surrounding researchers being corrupt or wanting to cause harm to participants by sharing their HIV status. Others expressed that they had no concerns because research staff know how to maintain confidentiality. YLWH participants were prompted to share stories they had heard from peers participating in research; however, the overwhelming majority reported that they had not heard any, with some suggesting that their peers were afraid to discuss HIV research due to a fear of stigma.

Stigma-Related Risks and Benefits When Involving YLWH in Research

HIV-related stigma emerged repeatedly in the discussion of risks and benefits when involving YLWH in research. Participants identified accidental disclosure, stigmatization, and discrimination as risks of participating in research (Table 3). Accidental disclosure from the researcher to the YLWH and others was considered risk, as some YLWH was unaware of their status. Some participants cited that YLWH may be undisclosed because caregivers choose not to disclose their or their child's status out of fear of stigma if the child was to accidentally share their status with others. Some SMEs cited stigma among peers or within families as major risk, which could result in feelings of suicidality and isolation, being kicked out of the home, decreased school attendance, and worse medication adherence. YLWH and caregivers expressed concerns about self-stigma and discrimination in schools and among peers. Some caregivers did not see accidental disclosure as a risk because they trust that researchers will maintain confidentiality. Others, from all 3 participant groups, disagreed that stigma and discrimination were a risk of research, citing that stigma and discrimination are no longer concerns in their communities, following increased HIV-related education and sensitization.

Table 3.

Stigma-Related Risks and Benefits of Involving YLWH in Research.

Theme	Subtheme	Illustrative Quote
Risks	Accidental disclosure to the YLWH	“Because of stigma, they [parents/caregivers] also don’t want to disclose to their children, so sometimes it is accidental disclosure or many other issues that arise.” –SME health care provider, male “As I had said before, some young people do not know why they take drugs and they may learn why they take drugs in research. You don’t know how it could affect the child. It can lead to something bad like being in denial and in the process, they may stop taking the drugs which will increase the viral load.” –Below 18 female adolescent in parent study
	Accidental disclosure to others	“Disclosing the child's status by accident isn’t a good thing because when a negative person finds out he will go to tell others, and when the child passes by, they will be gossiping that he has HIV and they should keep away from him. The child will be stigmatized.” –Caregiver, female “…if there is an accidental disclosure of HIV status then it becomes a problem because we are in a society where people are not fully embracing people living with HIV; therefore, discrimination or stigma.” –Above 18 female adolescent not in parent study
	Stigma among peers	“One of them is the most dangerous one is stigma. You know when they come here, then when they go back home, maybe their peers will ask them where were you, what happened to you? Then they might expose whatever they come to say. That stigma will be there. In a community, there are so many creations of stories, creation of rumors or words. It might even lead one to hang himself or herself. Now, they have said so many things about me so let me run and kill myself.” –SME chief, male
	Stigma within families	“And even sometimes adolescents are even sent out of their homes because of just having been diagnosed or participated in a HIV project. Some people disown them they do not want to stay with them.” –SME clinical researcher, male
	Self-stigma	Respondent: “And here we are not just looking about from other people, it may also have to do with self-stigma. Which is where confidence and self-esteem comes in.” Interviewer: “What do you mean by self-stigma?” Respondent: “Self-stigma, am talking about a situation where the individual feels, feels less confident, feels less worthy, feels less important, you know? Negatively treats themselves, negatively discriminates against themselves on the basis of their status.” –SME international research expert, female
	Discrimination in school or among peers	“Stigma is more related, if the adolescent maybe in the staff of the school maybe that adolescent is taking up his or her drugs then her classmate or her schoolmate comes and finds out they are taking ARV drugs so you’ll just conclude at that you are HIV positive, so they’ll start discriminating you and after sometime you’ll find that this person after being discriminated you’ll start having that stigma where he/she will start isolating herself and maybe forced not to go to school or not to take the drugs.” –SME community advisory board member, male “They can be discriminated not to do certain things or touch some things or even come closer to their friends and that is where the issue comes in.” –Caregiver, female
	No risk of loss of confidentiality	“For now, I can’t say that a bad thing could happen because you said you will keep this data confidential so I don’t think that it will—and if it happens I will know in future because I know the person keeping the information will maintain confidentiality and I believe nothing bad will happen.” –Caregiver, male
	Stigma is not a risk	“Information might leak but thank God nowadays people are not very afraid. People have been taught and they have realized that they are also human beings. Years back you couldn’t even touch someone who has HIV but though education they understand that they are also humans. They will just be accepted, there won’t be a huge impact. Stigma has reduced unlike before.” –SME chief, male Interviewer: “What about issues to do with stigmatization or discrimination?” Respondent: “We don’t have that.” –Caregiver, female “There are ways that have been developed to curb discrimination, you see nowadays there are apart from having yeah there are you see the how will I put it, the society or the community have been educated on the spread of HIV and AIDs and such so you get that there are very rare cases of discrimination and the stigma thing.” –Below 18 female adolescent not in parent study
Dual risk and benefit	Research can be both risky and beneficial for stigma	“Sometimes I think it can be both negative—because they might get discriminated but on the other side again, it can even help other people who were already fighting stigma and discrimination to actually realize that, so I am not alone, there are other people who are also living positively. It's two way.” –SME health care provider, female “Now if good information is shared during the process, it may work and bring the stigma down, but if as they continue to do the research and the study is being done they get to learn about other things-deeper things, you may get stigma increasing and then discrimination being an act from maybe part of the things they see…” –SME health care provider, male
Benefits	Addressing self-stigma	“Like the research I was previously involved in, it makes someone feel more confident and you learn not to stigmatize yourself. It helps you grow.” –Above 18 female adolescent not in parent study
Benefits	Reducing stigma	“They are free, the stigma has reduced, I think they are taking their drugs there is not that loss of hope, they are hopeful anyway.” –Caregiver, female “…it will give them courage to talk about HIV and sensitization.” –Above 18 male adolescent not in parent study

Abbreviations: YLWH, youth living with HIV; SME, subject matter expert.

A minority of SMEs described the research as both risky and beneficial in terms of stigma. They explained that while research can lead to stigma and discrimination through accidental disclosure, research can also reduce stigma by demonstrating to YLWH that they are not alone and by teaching communities about HIV. Some YLWH cited that research helped them address their own self-stigma; caregivers and YLWH both described that research gives YLWH the courage to openly discuss HIV, which sensitizes others and works to decrease the prevalence of stigma in their communities.

Stigma Considerations in Identifying and Approaching YLWH for Research

Participants described identifying YLWH for research purposes as difficult due to widespread fear of stigma, and many explained that recruiting and conducting research in private settings was an essential part of easing this fear (Table 4). When asked about their opinions on identifying YLWH through medical charts, many participants cited concerns that this method breaches confidentiality, and that by doing so, breaks the trust between YLWH and researchers. Participants expressed concerns about feeling that their privacy was violated, and that the medical chart interface could be managed incorrectly and result in their identity and HIV status being leaked, posing a risk of further stigma and discrimination. A minority reported having no concerns because the information remains within the hospital and the doctors maintain confidentiality.

Table 4.

Stigma considerations for identifying, approaching and enrolling YLWH in research.

Theme	Subtheme	Illustrative quote
Considerations for identifying YLWH	Identifying YLWH is difficult due to stigma	“Yes, there are hindrances because you know we have what we call stigma. Stigma is another problem because whenever you talk about AIDS, people tend to run away or they hide the information… So, at times this one is also very hard because it is hard to identify them openly; unless they are brought to hospital, they are diagnosed and found to have HIV” –SME chief, male
Considerations for identifying YLWH	Need for private settings	“It should be a private place. You cannot go to a public place.” –Caregiver, female “I think it should be private and something that does not include a lot of people because some of us will feel insecure. We will think about how others will think about us, how they will take us and how they are going to see us in the society once they learn we are going through this research.” –Below 18 female adolescent in parent study
Identifying YLWH through medical charts	Breaches confidentiality	“For example, merely because you know that I am HIV positive and you have my telephone number from my health records, does not give you the authorization to call me and tell me “Oh so and so I have this information.” How did you get my information? So navigating that interface between the health records, and you know…beginning to enroll or even to have an interaction with a potential participant is an ethical issue that has to be addressed and it doesn’t really matter whether it is an adolescent or not. But for the adolescents there is the additional risk that if you were to not manage that interface correctly then they will lose complete trust in you, because it means that somebody is leaking their information and adolescents take that very hard.” –SME IRB member, male “I think it is wrong because I feel the participant’s privacy is being manipulated. Not the participant but the client because they have not yet become participants. The researchers being able to go and review client medical records; I think the records should be private and confidential. I don’t think they should be somewhere where researchers can come and review them in order to contact them for research study. That is something that should actually be protected, and I think that the client’s information should just be classified, private and confidential.” –Above 18 male adolescent in parent study
	Breaks trust between YLWH and researchers	“That will be a little bit more tricky because this a situation where there is a lot of stigma and the adolescent is wondering how you got to know them and the whole family is also very apprehensive about it and so very tricky it is likely to be tricky” –SME clinical researcher, female
	Maintains confidentiality	Respondent: “Since research is being done in the hospital, they cannot go to divulge information. The information remains in the hospital.” Interviewer: “So, according to you, the approach is okay?” Respondent: “It is okay to me because doctors will keep it confidential.” –Caregiver, female
Where to approach YLWH for research	School setting	“School is also good. It's a good catchment. You can go to school. You just speak generally about your study. But if somebody wants to be enrolled, you do not enroll them in school. You enroll them at your research area. You just tell them that, "If you're interested, please come to such and such a place. We are here, here, here," so that they come, uh, in their own time, privacy, without other people knowing.” –SME lab lead, female “School, there is a problem using schools because there is discrimination from many teachers on young people living with HIV.” –Caregiver, male
	Social gatherings and peer groups	“There are AMPATH groups for those living with HIV…Those groups are the ones that know those who are in the interior because they are members living in the area. So they know each other. So when you come, the group members have the responsibility to bring the others closer. When you come, your work will not be as hard.” –Caregiver, male “Yeah, because youths like getting together they like socializing, so if you bring them together, in that point they are in their true selves they can be make their views clearer that the other times.” –Above 18 male adolescent not in parent study
	Clinic settings	“People are not comfortable of their relatives or their peers knowing their status. The only place that someone can comfortably be able to acknowledge their status would be a clinical setup where they have their peers around them. And the medical support staff.” –Above 18 female adolescent not in parent study “So I am thinking it depends, like if the study is being conducted in a clinic that is dedicated for youth with HIV, you know the chance that they feel stigmatized is maybe lower because that chance of being selected from a group of others who maybe are not negative is not there.” –SME clinical researcher, female
	Home settings	“When you go down at home, now you know that anything can happen. Maybe they live in a family where some are HIV positive and others are negative and that has never been talked about. Maybe one partner in that household is HIV positive and knows the status and the other partner doesn’t know the status you know, there is a lot of dynamics at the community level.” –SME health care provider, male “At home like in the house, I would say that is also okay but it also dependents because there are these youths … they know their status and they are living with people who don’t know about their status so you see it may not be that much convenient because it will definitely cause tension…” –Below 18 female adolescent not in parent study
	Through community health workers (CHWs)	“That one is doable but still based on the social status of the family if this approach may cause stigma to the child or if the family is stigmatized as a result of HIV, then it could cause a lot of pain to that child without them saying it out, but it is possible because the community health workers or community health volunteers, they live with them in the community and therefore they know them as a vulnerable group.” –SME health care provider, male “CHWs are known by the community for the purpose of HIV testing so definitely if I will be seen with a CHW, people will know that I am HIV positive. When they see us moving around together for a research or something, they won’t tell me directly but eyebrows will be raised and definitely after some time you will start hearing stories which will negatively impact the youth.” –Above 18 male adolescent not in parent study
	Through peers and YLWH	“What they can do is, first, for those who are here and infected, they should be united. They are the ones to bring those who are in hiding out. Those hiding could be the ones spreading more. If they are found, then they too will be helped. You cannot go from here and start calling out publicly for those who have the disease. No one will come.” –Caregiver, male “I just like to stress the issue of the guidance and training of the peers, that could be a vital way of making the research productive as in it could be a way of reaching a vast number of people or rather teens of a certain age group it would be … a productive way to reach people but the issue of stigma, social stigma it could play a part so with the social gathering it could be a part….” –Above 18 male adolescent not in parent study
	Church setting	“No, churches are not a place to do research…. Due to privacy. For example, if you speak with the pastor and he says that you can go ahead to do the research, other people will want to know. When an announcement is made requiring those who are HIV positive in church, the youths will not take part because they do not want others to know.” –Caregiver, female Respondent: “Maybe if it can be advertised in the church that anyone who is like that.” Interviewer: “Can you please explain to me more about the church.” Respondent: “Yes, in church we do have study, things that they teach the children about issues of HIV, and then now if as a parent you know that your child is like that or even if the child himself knows, he will ask for permission that they would like to go somewhere, yeah so I feel like that too would be good.” –Caregiver, female
	Through village elders and chiefs	“Mostly there in the village, the village elders announce to them and the chiefs also announce the same and tell people to just go and be tested, you are not forced or someone saying you have to but voluntary go, if you have it you will be educated.” –Caregiver, male
	Community setting	“Because in the community, remember stigmatization is still there. So there is no way that I can advise in the community.” –Above 18 male adolescent in parent study

Participants identified school settings, peer and social groups, the clinic, home settings, community health workers (CHWs), peer navigators, church, and community outreach as locations for which YLWH should be approached and recruited for research (Table 4). The majority of participants felt that recruiting at school would lead to accidental disclosure and discrimination by peers and teachers; however, some suggested that speaking generally about studies and inviting YLWH to come to the clinic to participate may be a way to safely recruit from schools. Participants were supportive of recruiting YLWH through social gatherings and peer groups, citing that YLWH are often more comfortable in these settings, and there is less fear of stigma in groups for YLWH. Similarly, there was support among participants for recruiting through peers living with HIV because YLWH are uniquely situated to be able to reach other YLWH and instill trust in research.

The clinic was commonly cited as the most appropriate place for recruitment because it is private, they have the support of the medical staff, and there is reduced fear of stigma at clinics that cater only to people living with HIV. Participants expressed concerns about recruitment through CHWs, citing that CHWs are known in the community to be involved in HIV testing and research, and being associated with a CHW could lead to accidental disclosure and stigmatization in the community. Some participants expressed concerns about recruitment in church settings due to the lack of privacy and youths’ fear of HIV stigma if identified as someone living with HIV. One participant mentioned that some churches teach more positively about HIV, and children and their parents may be receptive to advertising for studies at church. Participants suggested that village elders and chiefs are influential in promoting youth HIV testing, and therefore, may be a feasible resource in the recruitment process.

Discussion

HIV-related stigma continues to play a significant role in the lives of YLWH through anticipated and actual experiences; fear of stigma leads to changes in medication-taking behavior, disruptions in clinical HIV management, and even negative mental health. The results presented in this study demonstrate that beyond impacting youth clinical management, HIV-related stigma plays a significant role in how YLWH chooses to participate and engage in research. Participants described that anticipated stigma affects whether and how YLWH participates in research, where it is appropriate to recruit participants, the unique needs of this group in research settings, and the risks and benefits they perceive as part of research participation. These results support other findings that YLWH may see their HIV status as something that contributes to a sense of “difference” or isolation from their peers and that makes it challenging to relate to and form relationships with peers.^28–30

In discussing research participation, YLWH participants repeatedly emphasized the potential role and impact of HIV stigma, including fear of their HIV status being exposed through research participation and anticipating stigmatizing experiences if their status were exposed. Participants cited fears of accidental disclosure in the research process as YLWH are recruited or identified for studies, by being seen at the clinic for study visits, and through others seeing their names on research-related blood samples. These concerns are shared by YLWH in other work in Kenya, who have expressed fear of sharing their HIV status, whether purposefully or accidentally, due to experienced, anticipated, and internalized stigma.^{8,9,27,31–33} It is well-documented that HIV-related stigma impacts care-seeking and other behaviors among YLWH, and this study's findings demonstrate that fear of stigma also affects how YLWH engages in research.^27,34 Globally, studies have shown that HIV disclosure can be associated with feelings of isolation, anxiety, depression, negative self-image, and internalized blame.^35–39 It is, therefore, critical to ensure that adequate protections are in place to protect the confidentiality of research participants’ HIV status and minimize the risk of accidental disclosure and associated negative outcomes.

The majority of participants cited the clinic as the most appropriate location for identifying and recruiting research participants because stigma and discrimination are highly prevalent in other settings, including schools, churches, and communities; these findings align with previous research in Kenya which demonstrates that YLWH experience and anticipate stigma in a variety of settings.^{8,27,32,40,41} Participants were most concerned about research recruitment in the school setting, as YLWH experiences stigma and discrimination from both peers and teachers. Research in Kenya, South Africa, Zambia, and Ghana has demonstrated that stigma is highly prevalent in school settings and is enacted by both students and teachers, suggesting that school-based stigma interventions may need to be prioritized.^32,42–45

Participants identified accidental disclosure, stigma, and discrimination as major risks of research participation; however, a minority of participants suggested that these were not risks because stigma and discrimination no longer exist in their communities. Although recent literature suggests that levels of knowledge about HIV are increasing in Kenya, few other studies have reported decreasing levels of HIV-related stigma or discrimination.^8,9,31 This may improve in the future; however, some participants believed that research was beneficial because it addresses and reduces stigma.

This study has a number of strengths. Using qualitative methodology allowed for an in-depth understanding of participants’ perspectives and experiences, and enrolling participants from a variety of backgrounds provided a broad spectrum of views on the involvement of YLWH in research. Particularly, involving YLWH who have participated in research for multiple years provided unique and highly relevant insights. Having 2 sets of independent analysts, both with 1 Kenyan and 1 American investigator, mitigated the risk of bias introduced by personal reflexivity and cultural backgrounds. This study also has a number of limitations. The study was conducted in a single country, and may not be generalizable to many other contexts, but is likely applicable to other African countries considering the significant research and care for YLWH conducted in Kenya. The number of participants was relatively small but adequate for achieving thematic saturation in the relevant topic areas. Additionally, we included YLWH who were uniquely experienced in research and highly studied, and we mitigated this bias by purposively sampling YLWH who had not participated in the research.

Conclusion

YLWH, their caregivers, and SMEs across multiple disciplines observe and experience HIV-related stigma, which impacts not only clinical management but also the ways in which YLWH participates in research critical to the improvement of youth HIV management. These results suggest that researchers should address the role of stigma in research with YLWH by recruiting participants discreetly in private, comfortable locations, being gentle and developing trusting relationships with YLWH participants, and protecting participants’ privacy and confidentiality throughout the research process. These findings align with other studies in sub-Saharan Africa which suggests that people living with HIV strongly consider when deciding to participate in research is whether they trust the researchers and study staff, and one of the main characteristics YLWH looks for in youth-friendly services and research is the friendly staff.^46,47

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a grant (3R01AI147333-02S1) awarded to Drs. Rami Kantor and Rachel Vreeman through the National Institutes for Health and partially funded by K24AI134359 and P30AI042853.

ORCID iD

Rachel Vreeman

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HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya

Abstract

Keywords

Introduction

Methods

Study Setting

Study Design

Sampling and Recruitment

Data Collection and Analysis

Definitions

Ethical Approvals

Results

Participant Demographics

HIV-Related Stigma: Perspectives of YLWH, Caregivers, and SMEs

Stigma-Related Considerations for Engaging YLWH in Research

Stigma-Related Risks and Benefits When Involving YLWH in Research

Stigma Considerations in Identifying and Approaching YLWH for Research

Discussion

Conclusion

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iD

References