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Table 6 Key themes that shaped experiences suggestive of wellbeing among YPLHIV in SSA, as derived from the qualitative meta-synthesis

From: Informing the measurement of wellbeing among young people living with HIV in sub-Saharan Africa for policy evaluations: a mixed-methods systematic review

Third order labels

Third order constructs

Second order constructs (authors interpretation)

First order (sample of quotes or narratives)

Theme 1: Social acceptance and belonging

1.1 HIV-related stigma and discrimination

o Stigma compromised wellbeing via several pathways

o Impact of internalised stigma on identity, social interactions and engagement, medical adherence and mental health functioning

o Experienced stigma encountered at various socio-ecological levels exacerbated feelings of isolation and rejection

o Internalised and experienced stigma intersected with gender and cultural norms

o Stigma reduced feelings of social acceptance and social connectedness

o Stigma challenged ability to maintain relationships

- Fear if HIV-positive status was known among the wider community

- Caregivers fears on adolescent’s risk for rejection, isolation and stigmatisation

▪ “I’ve thought about telling them [my friends], but then I stop myself because I’m afraid they’ll be mean to me or they’ll mistreat me or they’ll avoid me.” [15 year-old male, South Africa] (Li et al., 2010)

▪ “I think that if I tell other children, they might end up treating him badly or have negative attitudes towards him.” [Grandmother-caregiver, Kenya] (Abubakar et al., 2016)

- Strategies to prevent unintentional disclosure-keeping one’s status a secret

▪ “After learning of her daughter’s HIV diagnosis, Nandipha’s mother reportedly felt ashamed, suggesting that she perceived the diagnosis to also be a reflection on her. To protect themselves from gossip, the family continued to keep Nandipha’s status a secret” [15–19 year-old, South Africa] (Vale et al., 2017)

▪ “Even at home the children don’t know. They see me and ask but mum tells them I have malaria and they don’t care. Mum tells me not to tell them.maybe in the future.” [18 year-old female, Uganda] (Mutumba et al., 2015)

- Development of negative identities

▪ “Up to now, I feel different from other children. Someone who looks miserable without HIV is far better than a person who looks healthy with HIV. [Who told you?] It’s how I know it and I believe it’s true” [17 year-old female, Uganda] (Mutumba et al., 2015)

▪ “Oh look at that girl who has AIDS”. I did rather people see me as Musa than them saying “Oh Musa with AIDS” (16–17 year-old male, South Africa) (Jena, 2014)

- Fears related to infecting sexual partner

▪ “So far I am not thinking about having a girlfriend. […] The problem have is if I infect my partner, does that not even cause more problems? I don’t want to infect my partner the way I was infected. So I think it’s better to calm down and wait for the day that a solution will be available.” [16 year-old male, Tanzania] (Mattes, 2014)

▪ “I have a boyfriend, but I cannot tell him am positive, although he says he loves me and this is stressing me a lot because, I want to get married, but I cannot because he will fall sick and I love him, yet I cannot tell him am positive ….” [20 year-old female, Uganda] (Matovu et al., 2012)

- Non-disclosure to parents- fear of loss of rights and entitlements

▪ “For me my father is alive and I am the heir, but if he knows that I am positive he might remove the heirship from me thinking that I will die before him. I must first weigh the possible outcome of disclosing and to whom.” [20–24 year-old male, Uganda] (Kyaddondo et al., 2013)

- Stigma experienced by family members and its consequences- feeling unaccepted by family, interference with medical adherence

▪ “(...) I grew up when my mother never saw me as a person who can really achieve something in future, because I am the only kid who was born HIV positive. (...) So, she saw me like a failure, I would not succeed in anything. (...) She used to discriminate me among my brothers and sisters. She used to treat them as children, but me as nothing. A bastard at home. “(…) I got to know that mothers are the most creatures that really love their children compared to their dads. (…) But I was really surprised that it’s my dad who loves me more than my mum. So I would ask myself why my mother was doing such. At times I would tell myself that this world is nothing for me.” [17 year-old female, Uganda] (Knizek et al., 2017)

▪ “He did not see eye to eye with his sister-in-law who did not like the fact that Mpendulo was HIV positive...in one incidence the sister-in-law found him eating food from a plate that was not designated for him. She scolded the boy for using the plate; stating that...he will infect her children with HIV. That angered Mpendulo a lot. He said he felt unwelcomed and not wanted.” [Case study of 15 year-old male”, eSwatini (formerly Swaziland)] (Shabalala et al., 2016)

▪ “My auntie told me that I do not belong to the family, because of my condition and I was always segregated from other family members. When I go back home my auntie starts throwing insults at me and saying that you have been sleeping around. She doesn’t care, if you tell her please aunt buy for me some clothes, she replies with annoyance that I stopped buying for you clothes in Primary five saying that I no longer have value and I don’t give you my things, it’s up to you. I remember the doctors called her one time to pick my medication and also to act as the adherence support person and she said, if it means for her to die, let it be so, I will not come. I even contemplated killing myself because of the situation” [16 year-old, female, Uganda] (Matovu et al., 2012)

- Stigma perpetuated by school learners and educators, impact on medical adherence and mental health

- Perceived lack of sympathy from HCWs- challenged communication between HCWs and patient

▪ “At first, when I took those medications I was in boarding school. I was coughing all the time and children were laughing at me and I felt bad. I don’t know how the matron got to know but she knew and told them. They back-bitted [gossiped] me whenever I passed” [18 year-old female, Uganda] (Mutumba et al., 2015)

▪ “There is a girl we lost, she passed away, she was 18.. . she had [experienced] stigma at school because they came across her drugs in her suitcase, and they pulled them out and they put them there and put her [medical] card on her bed and she was a head-girl and that killed her [spirit]! She had to switch school. Most of them you get these calls, when they are saying they have found out, you see, so she had to switch out schools.” [Counsellor, Uganda] (Inzaule et al., 2016)

▪ “Sometimes when I don’t feel like taking my treatment, I don’t. I can’t take my pills with water, and if I don’t have juice, I simply can’t take them. (Matovu et al., 2012) They shout at us when we don’t take our treatment, just like they did today. I wouldn’t be able to say all these things I have said to you to anyone of them. They are strict with us, so we’re scared.” [20 year-old female, South Africa] (Goudge et al., 2009)

- Sexual norms and gender oppression- impact on women’s mental health

- HIV contraction via sexual intercourse- self-blame

▪ “They won’t understand that I got the HIV from my parents. They will think I was sleeping around with older men.” [(16 year-old female, South Africa] (Jena, 2014)

▪ “One of my older brothers once told us that if he heard that one of his sisters was HIV-positive, he’d kill her. I realised that my mother and my elder brother would never accept a person who was HIV-positive. That’s why I have decided to keep it to myself.” [20 year-old female, South Africa] (Goudge et al., 2009)

▪ “It’s my irresponsibility. I got infected through unprotected sexual intercourse. So, it’s irresponsibility.. .. No one deserves to get the virus. But when you didn’t care. .. sometimes I say I deserve it. I knew how to protect myself, I knew it. I was a promoter, a person who promoted condom use. But it happened, I don’t know how.” [22 year old female, South Africa] (Plattner and Meiring, 2006)

1.2 Social support

o Supportive and unsupportive networks and impact on mental health and wellbeing

o Lack of support for caregivers

o Longing for relationships

- Caregiver support-material support, treatment support, emotional support from parents, re-connecting with parents

- Supportive siblings- forms of validation and acceptance

- Supportive extended family- emotional support

▪ “I didn’t find any problem [with the drugs] because my mum used to encourage me to take it a lot. She was also on drugs so whenever she took hers, I also took mine” [15 year-old female, Uganda] (Mutumba et al., 2015)

▪ “At home they help me with everything and give me all the support I need. It helps me get through knowing they love me. We take our pills the same times so we always remind each other. When she takes hers, she calls me to take mine” (16 year-old female, South Africa) (Jena, 2014)

▪ “I believed that when one is positive he/she can die any time. I also felt am worthless in this world. Later my brothers came and assured me that there was no need of worrying much because they were there for me. They told me that they will take care of me.” [24 year-old female, Kenya] (Lypen et al., 2015)

▪ [My uncle] made that promise after my mother was buried; he told me — I’m going to support you in good and difficult times — and right now he still is.” [19 year-old, male, Botswana] (Midtbo et al., 2012)

- Supportive peers- empathetic listening, encouragement

- Supportive HCWs- gratitude for care, assisting with non-adherence, providing safe spaces for emotional release

- HIV support group- received material support, instilled feelings of connectedness and acceptance

▪ “If I have stress, I can go to my friend’s place and explain to her and in turn she will give me advises [sic] that are worthy eventually the stress goes.” [19 year-old, male, Kenya] (Lypen et al., 2015)

▪ “I also didn’t accept myself, I cried and I was asking myself when I get to the house should I commit suicide or what? A nurse took me to a room and asked to cry until all the stress is gone. I really had stress.” [24 year-old female, Kenya] (Lypen et al., 2015)

▪ “Besides learning more about the disease, the pills and other things, they [who?] also provide me with money that I use to buy food...I feel welcomed. Like I have a family when I am with them. I always look forward to the meetings.” [15 year-old, male, eSwatini (formerly Swaziland)] (Shabalala et al., 2016)

▪ “I loved that children’s group because it comforted me to feel like I’m not the only one and to see that my friends have the same problem. […] And then we did not discriminate each other, we treated each other just like normal when we met. And we were not in a state of hatred and dislike but in a state of love,we loved each other just like normal.” [17 year-old female, Tanzania] (Mattes, 2014)

- Unsupportive family networks- impact on coping, self-acceptance, social-acceptance

- Lack of support for caregivers

▪ “My auntie told me that I do not belong to the family, because of my condition and I was always segregated from other family members. When I go back home my auntie starts throwing insults at me and saying that you have been sleeping around. She doesn’t care, if you tell her please aunt buy for me some clothes, she replies with annoyance that I stopped buying for you clothes in Primary five saying that I no longer have value and I don’t give you my things, its up to you. I remember the doctors called her one time to pick my medication and also to act as the adherence support person and she said, if it means for her to die, let it be so, I will not come. I even contemplated killing myself because of the situation. I secretly meet with my sisters, who financially support me and my auntie does not know, but when am in a hurry to meet with them I forget to take my medicine.” [16 year-old female, Uganda] (Matovu et al., 2012)

▪ “He did not see eye to eye with his sister-in-law who did not like the fact that Mpendulo was HIV positive...in one incidence the sister-in-law found him eating food from a plate that was not designated for him. She scolded the boy for using the plate; stating that...he will infect her children with HIV. That angered Mpendulo a lot. He said he felt unwelcomed and not wanted. “[Case study of 15 year-old male”, eSwatini (formerly Swaziland)] (Shabalala et al., 2016)

▪ “we just need a support group and I don’t know how it can be done. Some people believe they can just sit at home and cry which does not help, I know I have cried and I am still crying and have not found help yet.” [Caregiver, South Africa] (Petersen et al., 2010)

- Multiple losses and complicated grieving- longing for relationships they never got to experience

- Longing for fathers- shaped by deep cultural expectations

▪ “It’s that every child wants to have a dad and a mother at the same time … growing up having a dad and a mother because it’s really sad seeing some of my friends having their families and telling me they went out with their dads, then I knew that I didn’t have a dad … so many children do suffer from that thing because you all want parents, both parents.” [17 year-old male, South Africa] (Woollett et al., 2017)

▪ “I sometimes feel like it is empty here [pointing on the left side of his chest], like there is this big hole...like if I had a relationship with my real father, singavaleka lesikhala lengisivako la [this hole I feel in here would be closed]” [15 year-old, male, eSwatini (formerly Swaziland)] (Shabalala et al., 2016)

Theme 2: Coping

 

o Positive coping strategies facilitates wellbeing

o Negative coping strategies and impact on mental health

- Religion and faith- draw on beliefs and values to cope with stressful situation, relationship with God, source of comfort and hope, brings a sense of meaning and purpose

▪ “So you know they say God throws challenges at you to make you stronger; God does not throw things that He knows that you cannot handle? He throws things at you that He knows that you can handle...so that’s what keeps me going and to me like that’s what tells me everything happens for a reason. There is a reason it happened [becoming HIV positive] and cannot be changed now and if I want to continue to live, I have to take my tablets and all that...so that’s what keeps me going” [18 year-old male, South Africa] (Woollett et al., 2016)

▪ “God is going to give me all of my wishes, my dreams. He’s going to. .. God will be there” [15 year-old, male, South Africa] (Li et al., 2010)

▪ “I have accepted the Lord. I don’t know but if I were not [HIV-] positive, perhaps I would not have accepted the Lord. But it is being positive that makes you turn back from the world so you could also think about God” [24 year-old, female, Namibia] (Plattner and Meiring, 2006)

- Aspirations- marriage, children, educational attainment, career goals

▪ “I definitely want to be married and have my own family and children too when I finish my studies” [16 year-old female, South Africa] (Jena, 2014)

▪ “I want to be someone in future, a person that people admire and respects and going to school is my stepping stone” [16 year-old female, South Africa] (Jena, 2014)

▪ “I want to be a medical doctor and I want to study medicine. Am in Science class. So this picture reminds me of it that I can achieve that goal” [17 year-old, female, Nigeria] (Adegoke and Steyn, 2017)

- Normalising one’s HIV condition- self-acceptance, not feeling alone, social comparisons

▪ “You are just like a normal person, that means you live, you do your business, you study, you finish, you find work, you can support yourself. So to have [HIV] is like having a common fever.” [19 year-old male, Tanzania] (Mattes, 2014)

▪ “When I am dancing, even being with HIV, I am as normal as other children.” [15–19 year-old, male, South Africa] (Rosenbaum, 2017)

▪ “I am happy with it because there are some diseases which are bigger than this disease like cancer.” [18 year-old female, Uganda] (Mutumba et al., 2015)

- Social isolation

- Blame

- Anticipation of fearful events

▪ “He is always lonely and unhappy until sometimes I cheat him [I tell him] that do not worry you no longer have the virus ...” [Grandmother-caregiver, Kenya] (Abubakar et al., 2016)

▪ “They are always asking “why me, why me?” and sometimes they blame and resent their parents.” [Caregiver, Uganda] (Loos et al., 2013)

▪ “Yeah and afterwards, after like 3 years my mom died. I was like “I’m the next, I’m the next, I’m the chosen one”. Then my uncle dies and I was like “shit” … this shit is a really huge measure thing. Over fast, like you’re going down …;. I don’t know, this thing keep on telling me that [I will die], I don’t know why, so yeah … Yeah, it’s like they are beating me up with a five pound hammer, you see, shot after shot, shot after shot, so yeah.” [18 year-old, male, South Africa] (Woollett et al., 2017)

Theme 3- Standard of living

Economic insecurity

o Food insecurity and impact on adherence and mental health

o Fulfilling socio-cultural roles important for wellbeing

- Hunger and adherence

▪ “The main challenge, they are complaining a lot about hunger. They say because of medication they need a lot of food and you see most of their guardians are not financially able...” [Community healthcare worker, female, Kenya] (Abubakar et al., 2016)

▪ “It is because (crying) I sometimes get short of the money. .. it is sometimes so difficult for me to come and collect her medication because of the lack of money. .. I am unable to buy the right food for her because she has a special diet since she is sick” [Caregiver, South Africa] (Petersen et al., 2010)

  

- Limited schooling- unable to engage in occupations they aspired to

- Economic scarcity- delay on sexual debut, marriage, having children, limits ability to feel socially valued

▪ “I really wanted to be a teacher. I was not able to realize this goal. I did not have enough financial ability to help me pursue this goal. ...My parents died long ago. I had to come back from school every evening and look for money, at times I had to miss school because I had no pens.” …. [24-year old male, Uganda] (Mathur et al., 2016)

▪ “Until I have built a house for myself, when I have a house like this [referring to his mother’s house] I can slowly start thinking about getting married. But […] for example if you fail Form IV, you get married, do you have a house to put your girl in? Do you have work to feed your child? You have to fight to get a good job, to build a house, to prepare well. […] Right now […] I’m concentrating on books [education], that’s it!” [16 year-old male, Tanzania] (Mattes, 2014)

▪ “But he would feel hurt when his uncle complained that Mpendulo did not contribute to the household. He felt his inability to contribute was caused by his brother’s refusal to process his share of their father’s estate, and he himself carried the brunt of this as lack of money often forced him to take his medication on an empty stomach.” [15 year-old, male, eSwatini (formerly Swaziland)] (Shabalala et al., 2016)