Table 2.
3rd order constructs |
2nd order constructs + source papers |
1st order constructs + source papers |
SEM LEVELS |
Care stages |
Stigma n = 23 | Anticipated stigma surrounding being seen utilizing HIV services (1,2,3,4,5,6,17,20) | “Let me say there is this particular lady who works at the clinic who is also a neighbour, this lady might see that particular person going to do a HIV test and tell the family…” – Strauss, p 7. | ||
Anticipation of knowing people at the clinic (4,6) | ||||
Anticipated isolation from peer group (1,2,4,5) | “…if you are going for an HIV test its going to be stigmatized that you are sexually active and a lot of us youngsters do not want people to think that and know that.” – Ntsepe, p 144. | |||
Anticipated assumptions regarding sexual activity (2,3,5,21) | ||||
Anticipation of unwanted disclosure after being seen using HIV services (20,24) | “My child was pinned a red label on his shirt by his teacher after he knew the HIV and treatment status of the child.” – Nyogea, p 7. | I,F,C,S | All | |
Anticipated stigma from family member (2,3,5,12,14,18) | ||||
Enacted stigma from teachers towards ALHIV (7,12,14,22,23) | ||||
Anticipation of disclosure at school by carrying medication (11,14) | ||||
Desire to appear “normal”, avoid enacted stigma associate with symptoms (14,16) | “Nurses in Soweto do not treat you like human beings. They stigmatize you and by the time you leave there you have a different mindset” – Forrest, p S58. | |||
Enacted stigma from judgemental or reprimanding HCWs (13,15,18,19,21) | ||||
Anticipated stigma prioritizes secrecy routines over medication adherence (7,8,9,10,11,12,13,14,16,18,23) | ||||
Self-efficacy surrounding adaptive mechanisms n = 19 | Fear of being incapable of making lifestyle changes (1,2,5,6) | “It isn’t just to go and test, you feel everything, you never know – because they say a piece of paper can upset your life.” – Ntsepe, p 143. | I | 1, 3, 5 |
Fears over psychological reactions: depression, anxiety, suicide, “thinking too much” (1,2,3,5,6,19) | “…for elder children some will show signs of fatigue with medication. You can hear a child asking why he must take another dose and he is not feeling sick.” – Schenk p 24. | |||
Health awareness /knowing ones status (1,3,4,5,6,11,17,18,22,23) Frustration surrounding side effects (9,11,12,14,16,19,21) Drug fatigue (7,12,14,16,18) Forgetting (8,12,18) Frustration surrounding lack of independence /reactance (9,17,18) Morning dose problems (oversleeping, late) (12,18) Travelling /not being home /school trips interfere with medication routine (8,9,11,18) Pill burden, complicated medication prep (14,18) Using alarms & reminder devices (11,14,18) |
“Especially if I am really busy with school or anything, I set an alarm so I can remember coz I easily forget to take my drugs.” – Denison p 4. | |||
Concerns over losing family support: financial or neglect/abuse (1,2,3,5) | “After my father’s death we had a family meeting, where my family refused to let me stay with them.” – Midtbo, p 267. | |||
Guardian fails to give consent (3) | ||||
HIV+ family members as role models (3,10,20) | “I had some fear inside: how will my parents accept it… If only I was above 18 years I could stand for myself but now I am dependent on my parents.” Ferrand, p 2327. | |||
Peer or guardian encouragement to test (3) | ||||
Empathy from family members (21) | ||||
Family support n = 17 | Full, timely disclosure by family (8,14,17,18,19,22,23) | F | 1, 2, 4, 5 | |
Family assisted medication reminders (7,8,9,10,11,14,18,19,23) | ||||
Neglect /orphanhood (8,14,19) Punishment for adherence slips leads to dishonesty (16,18) Skills training, education and support for caregivers (11,20) |
“I: You said if your mother was still around things would not be happening the way they are now. Is there anything that you think would be happening differently..? R: Yes. I: Like what? R: Like love.” – Peterson, p 972. | |||
HIV counselling offered with no pressure to test (1,3,4,6) | “Here (at the clinic) they may be talking about pills, but at the support group children will be talking about their experiences…” – Mupambireyi p 109. | |||
Pre- and post-test counselling available (3,6) | ||||
Community HIV & SRH educational available (2,19) | ||||
Broader social support n = 17 | ALHIV outreach services /peer support (19, 23) | C | 1, 2, 3, 5 | |
School support /selective disclosure to “safe” teacher (6,10,14,18,23) | ||||
ALHIV community support groups (8,15,19,21,24) Sensitization of teachers & school staff (7,22) Treatment buddies (15,20) Testing at home /home based care (6,24) |
“When I was still in school I used to face cases of discrimination from other students, which lead me to tell my teacher to help me.” – Midtbo, p 266. | |||
Youth targeted services & hours (4,7,9,17,18,21,22,23) | “At the moment, adolescents are being sidelined. Adults are able to talk for themselves and children are also represented but no one represents the adolescents” Mburu, p 15 | S | 1, 2, 3, 5 | |
Adolescent specific health services n = 12 | Nurses, counselorscounsellors with similar characteristics to patient (age range, gender) (2,17) HCW trained to work with youth /ALHIV (18,20,24) HC facilatiesfacilities that offer HIV and SRH education (17,23) Clinic co-ordinated disclosure process with families (17,19) Full disclosure by HCWs of HIV status and what ARVs are for (15,23) |
“… they are at such a difficult stage in their lives, to add to that ‘Now you’ve got HIV’, and all the implications of that, it slays them.” – Cluver, p S62. | ||
Uninformed about services cost & location (1,2,3,4,6) | “I would go to a clinic far from home. There are so many people attending the local clinic who know me. I wouldn’t want them to know.” – Francis, p 338. | |||
Uninformed /fearful of what testing proceedureprocedure entails (1,2,6) No privacy /confidentiality concerns (4) |
“People come and do things so fast because they want to go back fast – they talk fast, write drugs, and then say ‘Next’.” – Mburu, p 15. | |||
Adequacy of health systems n = 12 | Appointments take too long (waits /queues) (1,3,6,21) ReferedReferred/linked to care following diagnosis (21,24) HCWs sensitized to work with HIV+ people (21,24) Long distance to clinic (2,8) Support groups /mental health services offered at the clinic (11,12,14,19) Understaffed clinics (21) |
“At the clinic we try to be as friendly as we can with adolescents… but sometimes we have a lot of pressure, especially with adult clients, so you lose your temper.” – Hodgson, p 1208. |
S | 1, 2, 3, 5 |
Long term symptomatic /history of severe illness prompts testing (3) | “You try and remind them [the child] how they were … Then they will say ‘I was not going to school’, ‘I was not able to do this and that’ and you will ask them if they want to go back to the same situation.” – Bernays, p 277. | |||
Past illness narratives n = 10 | HCW using reminders of past illness to motivate ART adherence (17) Individual’s ART adherence motivated by fear of becoming sick again (9,10,11,12,16,19,23) Motivation to adhere to ART falters after symptom recovery (9,12,16,18) |
“I took the ART for some months and I felt fine, so I stopped taking them because I felt I was no longer ill.” – Midtbo, p 265. | I, S | 1, 5 |
Unable to meet indirect costs of care (travel to clinic, medication for opportunistic infections) (2,8,10,15,17,19) | “I wanted to go on my own before I became seriously ill but I had no money for transport and to pay at the clinic.” – Ferrand, p 2328. | |||
Financial instability n = 10 | Incentives provided; food, soap, travel reimbursement, skills training (20) | “Please government, give people [who] have HIV food. And more money.” – Li, p 755. | F,S | 2, 3, 4, 5 |
Mandatory ART counselling not offered for free (22) Household food insecurity limits ART adherence (8,13,16,19) |
“I have a prescription to go and buy drugs [for OI treatment] for my child but I don’t have the money. This child needs medication immediately.” – Schenk, p 21. | |||
Non-full disclosure by guardians about what medication is for (11,12,13,15,23) | “Then they say I have malaria… so they will give me medicine… but I cannot start taking the medicine if I do not know where I got the malaria from.” – Mupambireyi, p 109. | |||
Social coping mechanisms n = 9 | Assigning reasons for taking medication to alternate illness to prevent unintended disclosure (7,11,14,19,22) | “… my friends don’t know that I had the virus [so I said] I felt some malaria.” – Denison, p 2. | I,F | 5 |
Family goals /women planning pregnancy (1,3,4) Goals (family, career or education) facilitates linkage & retention in HIV care (10,19,23) |
“As a mother, I need to be healthy for the sake of my child. I want to set an example by making good decisions.” – Francis, p 336. | |||
Future orientation n = 9 | Perception of having “no future” following diagnosis as a barrier to testing and care enrollmentenrolment (2,4,10,20) Family, education or life goals as ART adherence motivators (10,12) |
“I am scared because I want to finish school and you know, get a job and have a boyfriend, but I don’t know how to do that as a person with HIV.” – Li, p 755. | I | 1, 2, 5 |
Media influence n = 7 | Media influenced adolescents HIV knowledge /“Know Your Status” campaign (1,2,3,4,5,6) | “I would go for VCT because it’s importland to know my status. It will help me stay protected and also protect others.” – Francis, p 336. | C | 1, 2 |
Media campaigns to reduce HIV service stigma (2,22) | ||||
Traditional medicine used to avoid costs of care (7) | ||||
Reliance on traditional medicine n = 5 | Caregiver decision to treat with TM (12,13) TM practicionerspractitioners claiming to heal HIV (7,11,18) Medication mythology /mistrust of ART (12,18) |
“I used those herbs and I have even drunk urine because there is someone who came and lied to us that drinking urine can heal HIV.” – Kunapareddy, p 391. | F,C | 1, 2, 5 |
SEM levels: I – Individual; F – Family /Peer; C – Community; S – Structural.
Cascade stages: 1 – diagnosis; 2 – linkage to care; 3 – engagement /retention in care; 4 – ART initiation and adherence; 5 – viral suppression.