Background
Methods
Study setting
Study participants
Data collection procedures
Data analysis
Results
Participant characteristics
Characteristic | Frequency (%) |
---|---|
Sex | |
Male | 10 (45%) |
Female | 12 (55%) |
Age | |
18–19 years | 10 (45%) |
20–24 years | 12 (55%) |
Mean | 20.7 years |
Education level | |
None | 1 (4%) |
Primary | 7 (32%) |
Secondary | 11 (50%) |
Tertiary | 3 (14%) |
Religion | |
Christian | 18 (82%) |
Muslim | 4 (18%) |
Residence in Kilifi County | |
Peri-urban areas a | 11 (50%) |
Rural areas | 11 (50%) |
Challenges faced by young people living with HIV
Individual level challenges
Acceptance of HIV positive status
There are some who will not accept and will say ‘I am this way now [living with HIV], it is better not to take those medications [antiretrovirals] and just wait to die’.(Participant 12, Female, 18 years old).S/he does not accept [HIV positive status] and does not want to be told they have HIV, now you get s/he no longer takes their medication [antiretrovirals].(Participant 20, Female, 19 years old).
For example within the community you come out and accept [being HIV positive], definitely you will have disclosed that status to several people and that also gives you the strength, you will say ‘now that I have accepted what next?’ Also, it gives your brain an allowance to think more, what can I do so that according to the state that I am in, yes, I have accepted, what will I do to sustain or improve my life, my health?(Participant 7, Male, 19 years old)
Disclosure of HIV positive status
Disclosure was mainly a challenge if one had not accepted her/his HIV positive identity.That is a challenge that we also go through [disclosing HIV positive status], because it is my secret and I do not want you to know. Now you find if I tell this one, s/he will go tell others, when they speak out now others will start talking badly about me, and I will feel bad…and there are some who will even start discriminating [against] you.(Participant 5, Female, 24 years old)
P: Haah! It is not a challenge [disclosing HIV positive status], once they have accepted their situation, things are easy.I: What if they have not accepted?P: Now there, s/he will face a great challenge.(Participant 13, Female, 19 years old)
Adherence to antiretroviral medication
Non-adherence to ART seemed to be a challenge particularly among young adults who had not accepted their HIV positive status. Other reasons that made it a challenge for young adults living with HIV to adhere to their medications included the size of the pills (being too big) and medication side effects such as dizziness.Young people particularly have a great challenge in adherence to drugs [antiretrovirals], because they have a lot of activities, unlike children and the elderly. There is lots of travelling, there is what they call partying etc, so taking medication can be a challenge because let us say on Friday, weekends most people like partying, you know? One [a YLWH] has a set time for taking her/his medication, like 8 or 9pm, then her/his friends come around 7pm and tell her/him ‘aaah, there is a party somewhere and we have fare, let’s go!’ That one will forget taking her/his medication because s/he has heard there is a party and s/he will not carry medication to take while at the party, so that is also a challenge.(Participant 19, Female, 22 years old)
With antiretroviral medication, adherence is not only about taking the pills regularly, but also ensuring that the time between dosages is regular. Some of the young adults described how it was difficult maintaining regular routine time of taking their antiretroviral medications because of reasons such as visitation by friends whom they have not disclosed to or conflicting school schedule.“It is really a challenge [antiretroviral adherence] for those who have not accepted living with HIV because someone will for sure refill their antiretroviral medication [at the HIV clinic]. Every time, they do not miss refilling, but now when it comes to taking the medication while at home, they don’t, you see?(Participant 7, Male, 19 years old)Now, others say the [antiretroviral] pill is big, it is difficult to swallow. Others say after taking the pills, they feel dizzy. Others say after taking the pills, they often feel hungry. These are some of the reasons why it becomes difficult for some to adhere.(Participant 10, Female, 22 years old)
From the in-depth discussion around medication adherence with the participants, aspects of ‘getting tired’ and ‘giving up’ on daily antiretroviral dosage emerged. One of the participants was keen to point out that most young people living with HIV would have preferred other modes of administration of antiretroviral drugs such as monthly injections (if made available) compared to use of daily oral pills.Now, maybe you are required to take [antiretroviral medication] at 8 o’clock, that time you find maybe you are required to be in a certain place and you must be there at that time and you cannot carry your medication and have them with you in class.(Participant 1, Female, 21 years old)
You know most young people [living with HIV] say at least there should have been antiretroviral drug injections that one can use for a month after which they go back for another injection, at least that would have been better.(Participant 9, Female, 24 years old)
Intimate relationship challenges
For some who were thinking about marriage, finding someone to start a lifelong relationship seemed a challenge, especially if that other person was HIV-uninfected. Others were uncertain about marriage life altogether, worrying for instance about how they will get married when they have HIV.You find that in the community I have friends, both male and female friends. Before I came to know about my [HIV positive] status, I had not started dating girls. Afterwards, I came to know about my status, and as I continued taking these drugs [antiretrovirals] and my viral load improved, I now wanted to be in a relationship with a girl. So, the very first time, the girl I talked to rejected me because I told her my [HIV positive] status, as I did not want to hide it from her. I told her the truth about being HIV positive and that I did not want to have a relationship with her so that I infect her, no, it was simply starting a close relationship, so we live happily in the community.(Participant 14, Male, 19 years old)
Now, when you are in a relationship and you are this way [HIV positive], you question yourself a lot. The aim of starting a relationship is getting to know each other very well, because this often leads to marriage, and remember when you enter marriage life there is a time you will want to have children. So, a young person will question herself a lot, saying ‘this state of mine [being HIV positive], how will I get married? Will I give birth to children? Maybe the children will also be HIV positive.’ You understand?(Participant 19, Female, 22 years old)
Meeting costs of care
At worst, some have to go without taking their medication until when they can find the fare.You are forced to do menial jobs at the construction site, in peoples’ farms, which is not an easy job, but because you have no alternative, you do it to meet the regular costs of care.(Participant 6, Male, 22 years old )
Like me, I come from XXXX, you cannot walk from XXXX to Kilifi, it is far. So, you are forced to take a motorbike to the bus stop, at the bus stop you take a public service vehicle to here [Kilifi]. Now when you do not have fare, you are forced to stay at home even when your [antiretroviral] medication is finished, until when you get fare.(Participant 20, Female, 19 years old)
Mental health challenges
Psychological distress can negatively impact the life of a young adult with HIV in that some may stop taking their antiretroviral medication, loose concentration in school (hence poor school performance) or think about committing suicide.Myself, I have a lot of sadness, I see others having their parents and I don’t, my parent died because of this HIV, so I am… [shaking head] until sometimes, it gets to a point, I cry.(Participant 22, Male, 19 years old)The way people say, aah! Young man, you need to marry. Now, because people do not know that I have this illness [HIV], I just keep quiet, then I go sit down and think too much, I have lots of thoughts, I say, aah! These people are telling me to marry and the way I am this way [living with HIV]?(Participant 4, Male, 24 years old)
According to one participant, many affected young adults living with HIV end up abusing drugs as a coping strategy to avoid stressful thinking.When you are stressed up, you cannot even concentrate on other things. Maybe you are in class and stressed, you cannot keep up with studies. Also, if one [a YLWH] is stressed up, s/he cannot even do some things, s/he will think about many things, maybe regretting why it had to be like this [living with HIV] and what will happen in the long run. Now, such a situation can even discourage you, you decide even to stop taking the medication you were taking, you wait to die.(Participant 11, Female, 20 years old)When you are stressed or worrying a lot, there is another thing, you will say, ‘aah! Now why am I like this [living with HIV]? It is better I commit suicide, or I die through drug overdose’.(Participant 18, Female, 22 years old)
Many end up using drugs of abuse, because of thinking a lot. They want to do away with such stressful thoughts, so they begin abusing drugs.(Participant 3, Female, 21 years old)
Family level challenges
Parental loss
Death of parents brought additional challenges to these young adults. Left on their own, some had to take the responsibility of meeting all their basic needs. Some had to move and stay with a relative or step-parent (where the remaining parent remarried), under whom the care was described by the young people as ‘not the same as before’.The challenge that I have personally faced is when I lost my mother. Yeah, that affected me a lot, it was a great loss that I have never experienced in my life before, because she was my greatest source of support, she provided food, she stood by me, she was my happiness, but when she passed on, is when I started getting stressed until I lost weight, viral load went up to an extent I could not bring it down.(Participant 2, Male, 22 years)
Poverty
From the discussions with the young adults, it was clear that they are advised by healthcare providers to have at least five food servings in day but due to poverty, this is always not feasible. What most could manage was one food serving in a day (either in the morning or evening). Death of parents worsened the situation as they were often the primary providers of basic needs in the household.Like me, I may sometimes not have money, no food, so you take medication [antiretrovirals] but you are hungry, you just take the medication like that [without eating].(Participant 10, Female, 22 years old)There is a challenge there, financial problems [in the family] contributes to a YLWH not having a balanced diet.(Participant 6, Male, 22 years old)
Interpersonal relationship difficulty within the family
In some cases, this was because other siblings thought that they received ‘special treatment’ in the family.Your brother, when he sees you taking [antiretroviral] medication, he starts despising you…saying, ‘you will remain that way, those drugs will not help; they even smell bad’(Participant 17, Male, 18 years old)
P: There is another challenge we go through. For a young person, but even any other person who lives with HIV, this virus does not go hand in hand with stress. So when your parent gets to know that you have this illness [HIV], and other siblings are well, there is a way they try beyond their means to cater for your needs first then those of other siblings, so that you do not become stressed and they ensure your health is good. These others [siblings] will begin saying you are being favoured.I: Ehe, so when they say you are being favoured, in what way is that a challenge?P: It can be a challenge because now all your siblings will be against you and they will not like you.(Participant 19, Female, 22 years old)
Community level challenges
General community challenges
Other young adults living with HIV felt that socializing with peers was not a challenge if one had not disclosed their HIV status:P: It is a challenge [peer-to-peer socialization] because you will see that when you are around your friends, you feel that they are talking badly about you, you feel uncomfortable.I: Ehe, and how does that affect this young person?P: Makes her/him not to socialize, s/he becomes lonely, always alone.(Participant 16, Female, 24 years old)
Myself, I do not see any challenge, because you will not have told them that you have HIV or what, no. You will just be chatting with them and no one will be knowing. That will just remain your secret.(Participant 10, Female, 22 years old)
Challenges within the school environment
Making close friendships
You find that sometimes you fear making close friendships because you can…I mean when you get used to people, others can scrutinize you, for example at school, when you are taking [antiretroviral] medication on a daily basis, so they begin suspecting you and in that they can ask you a lot of questions, so this makes you fear a little bit. So…I mean such friendship becomes a problem sometimes.(Participant 22, Male, 19 years old)
Forced to be out of school
For me, my parents passed away when I was very young. So, we were raised by our aunt, but the aunt was not raising us the way other children are raised. So, I could not go to school because I had my younger sibling whom this illness [HIV] was worsening. So, I had to stop schooling and studying completely and wait for my sibling to recover first before I continued.(Participant 21, Male, 19 years old)
Challenges at work
Non-supportive work environment
P: Another challenge is if one is employed, there is a way the boss may fail to understand. You will try explaining to her/him, but s/he will not want to understand. What s/he wants is for you to do her/his work but matters of your health is none of her/his concern.I: Okay, is that after you have already told her/him about your HIV status, or you simply told her/him that you would like to go to the hospital?P: Yeah, after you have already told her/him your HIV status.(Participant 1, Female, 21 years old)
Challenges at the HIV facility
Long waiting time
The service here needs to be improved a bit but also this [antiretroviral] medication need to be added [quantity] because for some of us who come from far, we come here [at the HIV clinic] we wait until 1pm is when we get our medication then we leave, now we suffer from hunger, we left home early morning only to come and wait here, the doctor is only one so we are told wait…and wait.(Participant 15, Male, 18 years old)This service would have been better because we can come here, here at the [HIV] clinic, you get few doctors, either one or two, so the services are very slow but when doctors are many, if we come here, we will be served quickly, one who needs to return to school goes, one who needs to go back to work goes.(Participant 20, Female, 19 years old)
Inter-level challenges
Level of social ecosystem | Forms of HIV discrimination | Data sources | Select supportive quote(s) | Forms of HIV-related stigma | Data sources | Select supportive quote(s) |
---|---|---|---|---|---|---|
Individual level | – | – | – | ▪Internalized stigma | 4 young adults living with HIV | Like me, when I come this side [Kilifi], I usually come to my sister, so I cannot take my medication [antiretrovirals] in front of her workers or other people at home, I usually hide so that I can take the medication. (Participant 21, Female, 24 years old) |
Family level | ▪ Isolation ▪ Separate plate or cup to use ▪ Separate sleeping area ▪ Denied food ▪ Their education being stopped or changed to e.g. doing short courses ▪ Considered to be of no value ▪ Overwhelmed with chores unlike the rest of the children | 13 young adults living with HIV | Like me, I have a big problem. At home there is discrimination, I am given my own plate and told to sit aside alone, I am told ‘sit there you are worthless’. So, I am very sad at home, I am there but not happy. It is just that I don’t have an option but to stay, you wish to move out and go stay with your dad, but again it is very far. (Participant 15, Male, 18 years old) A person like me, when they tell me to wait, all of us have performed well, but my sibling has been taken to [secondary] school, not me. When they tell me to wait, I will start having a lot of thoughts. I will think maybe they are thinking when they educate me or when they pay my fees it is like wasting their money because it is like I will die any time. (Participant 19, Female, 22 years old) | ▪Perceived stigma ▪Enacted stigma ▪ Associative stigma | 3 young adults living with HIV | …they can say this person is HIV-infected, now when s/he mingles with my children, will s/he infect them? You realize in this they lack an understanding. (Participant 1, Female, 21 years old) Most will often be afraid sitting next to you or even sharing a bed with you, some house chores that need sharing like washing utensils, cooking, they will not want you to cook for them. (Participant 4, Male, 24 years old) Now I was not born with HIV, I got it after being born. Now I come to tell my parents, I am this way [living with HIV], it will take a lot of time for them to understand me. Now they can even chase me, telling me ‘go and stay on your own, fend for yourself because that [acquiring HIV] was your making’. (Participant 5, Female, 24 years old) |
Community level | ||||||
i. General community | ▪ Being sidelined in community activities ▪ Friends keeping away once their HIV status is known | 4 young adults living with HIV | Now there is a way if one is living with this virus [HIV], now in the community there is this spreading of rumours, and then some people really lack knowledge about this virus. They think that when one gets the virus then they are not of any value to the community. You find maybe there is an activity that needs all young people to be involved maybe it is of benefit to them, but now that people in the community know that you are HIV positive, they sideline you. (Participant 19, Female, 22 years old) For young people like us [living with HIV], our life is usually very difficult. Even your friends can distance because XXXX now has HIV, you see? (Participant 9, Female, 24 years old) | ▪Enacted stigma | 5 young adults living with HIV | P: For me, one of the challenges I face, you may be going somewhere, and people there know that you have HIV, now when you pass, they begin saying ‘you see that lady, that lady has HIV. Now when it gets to that level, you begin thinking and questioning whether you have any value. I: Eee, what thoughts now? P: You can even think of committing suicide. I: Eee, have you ever planned to do so? P: Haah! Not yet, but such thoughts come and go (Participant 13, Female, 19 years old) Like me, I face a big challenge. I was very close with some friends in the community but then they were told, ‘aah! That boy, do not associate with him, when you greet him, he will infect you with HIV.’ (Participant 15, Male, 18 years old) |
ii. At school | ▪ A teacher being reluctant to mark work by a young person living with HIV ▪ Other students reluctant to play games with a young person living with HIV ▪ Other students reluctant to share anything with a young person living with HIV | 3 young adults living with HIV | You become discriminated in school, you are at school, maybe when you let the teacher know that on a certain day you will go to the clinic to refill medication, now s/he begins asking what the drugs are for, you are left with no option but to explain. Now when you tell her/him, s/he begins to discriminate you. Things to do with your books, s/he will…that is s/he will mark with caution or sometimes will never mark, that teacher will never mark that book. S/he will tell fellow students, the students also will discriminate you, they will not want to play [games] with you or share anything with you. (Participant 20, Female, 19 years old) | ▪Enacted stigma | 2 young adults living with HIV | At school there is also a challenge because from 18 to 24 years, most are in school, and students at times have problems, they are stubborn and intolerant. Now there [at school], when you are known to have HIV, first your desk-mate can run away when told ‘you are sitting next to an HIV-infected person, heeh! At your own risk, I cannot sit next to an HIV-infected person.’ Sometimes during breaktime, you may have bought foodstuff to share with friends. When others are given by their friends, they take, but when you want to share, they refuse ‘she has HIV, do not take her food, do not eat’, now those are the challenges. (Participant 19, Female, 22 years old) Another thing, maybe when other young people know that you have HIV, they will discriminate you or will not talk well about you. Friends will run away because they do not want to be in contact with you, maybe you can infect them. (Participant 11, Female, 20 years old) |
iii. At workplace (when seeking employment) | ▪ Not considered for a job after health check ▪ Not considered for a job after disclosing HIV positive status | 3 young adults living with HIV | There are certain jobs where health tests are a must, and when one gets tested and is found to be HIV positive, s/he will not get the job (Participant 11, Female, 20 years old) Young people living with HIV, especially those who have completed secondary education or university or college, it is not easy for them to get a job so that they can sustain themselves. Wherever they go, when they decide to disclose that they are living with HIV, mostly, such young people are never considered and remain jobless. (Participant 21, Female, 24 years old) | – | – | – |
iv. At the HIV clinic | – | – | – | ▪Perceived stigma | 5 young adults living with HIV | There is a big challenge here [HIV clinic], for example when a young adult like me coming from place XXXX, I am still in some form of denial, now you will say, ‘I do not want to go there [HIV clinic] and find so and so who will see me’, you see? Now you will have the fear that when you come here [HIV clinic] you will find the mother of so and so, ‘aah! So even the mother of so and so is here, she will go and tell other people’, you see? Now you give up [coming to the clinic]. Others will come in uniform [to be prioritized first], cover their faces with headscarf so that they are not recognized, others act as if they are staff at the clinic when they notice someone familiar, but actually they have come to refill their medication, you see? (Participant 3, Female, 21 years old) |
In the community, HIV-related discrimination was characterized by rejection and isolation of YLWH by members of the community to an extent where already established friendships were terminated once one’s HIV positive status is known.P: Most [YLWH] complain about discrimination.I: Ehe, what do they say?P: They say they are discriminated at home because they live with stepmother who has other children…they are given all the house chores, they are not valued, food is little when the other children are given enough, so it is a big problem.(Participant 2, Male, 22 years old)
From the in-depth interviews with young adults living with HIV, it emerged that in the school setting, discrimination from both teachers and fellow students arose from the knowledge about a young person’s HIV positive status (see select excerpt in Table 2). The prospects of discrimination made some young people not to disclose their HIV status. For those whose HIV positive status was known and had experienced discrimination, this negatively affected their ART adherence, concentration in class, and resulted into mental health issues.The first challenge that many [YLWH] encounter is mostly discrimination; the society rejects them. For instance, a friend whom one used to share things with, when they come to realize their HIV positive status, from that day onwards, such friendship ends. (Participant 7, Male, 19 years old)
Perceived and enacted forms of HIV-related stigma were the most commonly mentioned in our in-depth discussions with young adults living with HIV, at the family and community levels. Internalized (self) HIV-stigma was evident from the interview with one of the participants whereas associative HIV-stigma emerged in the discussions with another participant, at the family level (see Table 2 for select excerpts). At the community level, specifically the HIV clinics, HIV-stigma was more pronounced where a young person was still in denial of their HIV-positive status.At school, when you are discriminated because of having HIV, you will not concentrate in class, you will be thinking a lot all the time asking, ‘why am I like this, why am I being discriminated?’(Participant 18, Female, 22 years old)You get stressed because you have no one to chat with [in the community], you are all alone.(Participant 6, Male, 22 years old)
Because of pervasive stigma in the community, it emerged that most young people opt for HIV services in clinics far away from their community.When one has not accepted their [HIV-positive] status, it is very challenging to pass there [outpatient unit] and enter here [HIV clinic]. That is why sometimes you find a YLWH wearing something to cover their head, like a hijab, on the day of their clinic appointment.(Participant 19, Female, 22 years old)
For young adults who experienced stigmatization once their HIV-positive status became known, psychological distress, thoughts about committing suicide or running away from their community lingered on. Additionally, they struggled adhering to ART.One will say, ‘aah! Why should I go there [a nearby HIV clinic]? There, people will see me and start talking. I’d rather come here [a faraway HIV clinic] where I am not known, although it is far.(Participant 3, Female, 21 years old)
Because of HIV-stigma, you find YLWH thinking about committing suicide, running away, and others are stressed.(Participant 11, Female, 20 years old)
Support systems aiding positive coping among young adults living with HIV
Reliance on spirituality, including advice from spiritual leaders, gives hope to young adults living with HIV (e.g. about emergence of a cure drug in the future) and guards against sexual promiscuity (which for instance may lead to acquisition of other HIV virulent strains).Us young people [living with HIV] do not have any other source of support other than a job. When you have a job, most of the stress is avoided because first, you will not be at home, maybe it is the home environment that is stressing. You will not be there; you will be busy involved with your development matters.(Participant 7, Male, 19 years old)
The different forms of social support (from families, friends, community-based organizations, healthcare providers and peer meetings) described by the participants were, among others, a source of encouragement/moral support, financial support (mostly family and friends), advice and guidance (see Additional file 2 for more examples and illustrative quotes). As would be expected, healthcare providers play a key supportive role in terms of HIV treatment, care, and follow-up.It can be a pillar because like a Christian, when you become religious, you cannot engage in some things out there, things like being promiscuous. You cannot do such things out there if you are religious.(Participant 4, Male, 24 years old)
They [doctors] are a source of support, a big pillar of support, because without them, without doctors, then it is death. Doctors are especially a strong pillar of support because when you arrive here [HIV clinic], when you explain yourself well, you get the best treatment.(Participant 9, Female, 24 years old)