How family issues influence adolescents to disengage from HIV care

Adolescents living with HIV in Kenya – particularly those orphaned by the loss of one or both parents – experienced challenges when new caregivers or unstable living situations undermined HIV care engagement, according to a qualitative study recently published in the Journal of the International AIDS Society. These challenges were compounded by poverty, stigma at the household level, and lack of caregiver capacity and skills to support adolescent HIV care.

Background

Of the 1.7 million adolescents (ages 10–19) living with HIV globally, 89% live in sub-Saharan Africa. And despite the scale-up of antiretroviral therapy, adolescents still have poorer treatment outcomes, including lower viral suppression rates; poor adherence to medication; higher rates of disengagement from care; and high mortality compared to other age groups. In Kenya, AIDS is the leading cause of illness and death among adolescents. 

This study, by Dr Courtney Myers of Indiana University, follows a previous report which found that trauma is a major underlying reason for adolescents disengaging from HIV care in Kenya. Since adolescents experience significant transitions related to caregiver, peer and social relationships which impact their wellbeing, the current research investigated how family-level environments affect disengagement or support re-engagement in HIV care. 

The study

The investigators traced 10-19 year olds who had been enrolled at Moi Teaching and Referral Hospital or Kitale District Hospital in western Kenya and had missed their last appointment for 60 days or more. 

A total of 42 disengaged adolescents took part in the study, with the majority (67%) being female. Most participants (64%) were between 15-19 years and 67% had experienced the death of at least one parent. Thirty-four caregivers, including parents, uncles, aunts and grandparents, also participated in this study. Also recruited were 28 healthcare workers who included clinical officers, nurses, outreach workers, social workers and a psychologist.

Living situations and contexts

Instability in adolescent living situations was a central factor in disengagement. Orphaned adolescents faced challenges navigating HIV care while also coping with parental loss, relying on new caregivers, changing households, or living on the street.

“I went to these family members that I have never gone to [before]… It’s far from town, something like a rural area, so I found it hard because they never knew my status.” – Female, 20.

“When [I] was with my friends [on the street], I did not want them to know that I am taking drugs [ART]. So, I stayed for three to four months without taking the drugs.” – Female, 19.

“I was just staying here, so I was just coming on foot. It was near, but now that dad retired last year, he went to [rural town]. So, from there is when transport has been an issue.” – Male, 19.

While unstable living situations contributed to disengagement, having supportive caregivers and clinic-level flexibility supported re-engagement in care. This was by accommodating scheduling needs or transfer to an accessible site.

Household poverty

A family’s lack of funds for transportation to clinics, food to take with ART, or basic needs was a frequent barrier to retention.

“You can go to some places and you even feel traumatised. You get to someone’s place and there is nothing, not even a seat. I mean you feel for sure that this one needs to be helped.” – Healthcare Worker.

Some adolescents disengaged after an emergency, such as when a family member’s illness exhausted the family’s resources.

“My husband was sick. My son got into an accident, and his leg was amputated. So, we lacked any means, and it was a problem. That was the time I lacked money. Any little that we could get, we could bring it to the hospital. She took two months before she could come. She came in the third month.” – Caregiver of a 17-year-old female.

However, having financial resources facilitated adolescent re-engagement. Caregivers who could save funds and arrange absences from work could support adolescents’ appointments.

Caregiver capacities and skills to support HIV care

Adolescents were also found to disengage because caregivers were unable to help navigate care.

“Some of them; and especially those who are challenged in a way, maybe those who are orphaned and they are being taken care of by guardians, uncles… maybe the parents died and now they are being taken care of by an uncle who may not really understand the nature of this disease.” – Healthcare worker.

Caregivers described lacking social and mental health support to care for adolescents.

“There is a time we were to come with him, but he ran away. That thing [bothered] me so much I lost my breath, I could not speak, and I said I would never come back here again. I even told them I would not come back here again; I think I will die here for no reason. I think I was very angry, because I could not breathe nor speak. I wondered what was wrong with me… He went back to the streets and refused [to participate in care]… I just let it be for the time being. It bothers me inside, but I can’t tell anyone.” – Caregiver of 19 year-old male.

Caregiver capacities to help navigate HIV care facilitated engagement. This included supervising ART adherence, reminding the adolescent of appointments, accompanying them to clinic or being in communication with the clinic. Disclosure of the adolescent’s status to relatives further enabled such support.

Stigma at the household level

For adolescents settling into new households, anxiety surrounding HIV status disclosure and anticipated stigma prevented them from seeking resources to continue in care.

“Telling them I want to go to the clinic, they will ask like, ‘what is the problem?’ And I like keeping my things confidential. Then I was like, I cannot tell them, because now I will start explaining everything from the start. So, I just kept quiet until my clinic day passed.” – 20-year-old female.

Incomplete household disclosure contributed to disengagement, including when the adolescents themselves were unaware of their HIV status.

“There is a time the parents disagreed, and the mother had to leave that home and this particular child remained but with a busy father and no one else wanted to take the child to the clinic because honestly, they didn’t know. The siblings are asking this child, ‘Nowadays you don’t take the medication you used take? What happened?’ The small child had not been disclosed his status.” – Healthcare worker.

Enacted stigma from caregivers, including social isolation, rejection and abuse, also impacted adolescent wellbeing and HIV care engagement.

Caregivers who showed solidarity with adolescents could support re-engagement in HIV care. Adolescents were also strongly influenced by having role models in their families who were thriving with HIV.

“I also see my mother taking them. So, when I see her taking the drugs, I also get that courage to take those drugs.” – Female, 20.

Conclusion

By including the perspectives of disengaged adolescents, caregivers and healthcare workers, the study provides critical insights to understand drivers of and vulnerabilities to disengagement, and to map the sources of support that could be leveraged to promote re-engagement. The authors conclude that “addressing family-level contexts and support may, therefore, contribute to healthy adolescent transitions to self-management and improved HIV care outcomes.”

“Developmentally appropriate interventions targeting household relationships, disclosure, HIV stigma reduction, care resources and economic empowerment may promote adolescent engagement in HIV care,” they say.