Challenges faced by caregivers of virally non-suppressed children on the intensive adherence counselling program in Uganda: a qualitative study

Abstract

Background Of the estimated 130,000 children living with HIV in Uganda, 47% are receiving ART. Only 39.3% have suppressed HIV-1 viral load to levels below 50 copies per ml. Caregivers are key drivers of adherence to achieve viral suppression in children. We investigated the challenges and potential support required by caregivers of ART-treated children. Methods A qualitative study was conducted within the Infectious Diseases Institute paediatric ART program in Kampala and Hoima districts. Caregivers of children with viral loads above 1000 copies were purposively sampled and engaged in five focus group discussions (FGD). The FGD guide highlighted questions on challenges that caregivers face and the kind of support they required to improve children’s ART adherence. Thematic analysis using the inductive approach was used. All the transcripts were read, coded and emergent themes determined. Results Overall, 37 caregivers participated in five FGD, of whom 29 (78%) were female, 28 (76%) were HIV-infected and 25 (68%) were biological parents of the children. The elicited challenges were either in failure to attend the counselling sessions or in supporting adherence to medication. Individual and health system challenges such as competing priorities, logistics, poor quality of counselling and lack of reminders prevented attendance at counselling sessions. Five themes emerged as challenges to supporting adherence: i) environmental (school activities, working away from home), ii) personal (non-disclosure, stigma), iii) psychological (guilt), iv) financial (lack of food and transport) and v) child-related (fatigue and peer influence). Three major themes emerged for the support that caregivers needed namely: a) health system reforms (clinic appointments outside school hours, minimize ART drug stock outs and improve quality of counselling), b) psychosocial support (support with disclosure of HIV status to children and their families, more frequent peer support groups and parenting classes) and c) economic empowerment (training in vocational skills, school fees support and opportunities to initiate income generating activities). Discussion and conclusion To achieve viral suppression, ART programs require targeted efforts to provide specific health facility requirements, psychological and economic needs of ART-treated children and their caregivers. Integration of HIV treatment with programs for orphans and vulnerable children may improve viral suppression rates.

The impact of loss of PEPFAR support on HIV services at health facilities in low-burden districts in Uganda

“…Participants in this study reported that the cessation of the ‘mentor mother’ pediatric adherence support mechanism at case-study facilities had contributed to declining viral suppression among pediatric patients. Studies in Uganda suggest that viral suppression among pediatric patients is as low at 23% [ 29 ] and with the loss of tailored programs for pediatric patients, it is possible that even greater challenges to viral suppression among this group may be seen.…”

Factors associated with virological non-suppression among HIV-positive children receiving antiretroviral therapy at the Joint Clinical Research Centre in Lubowa, Kampala Uganda

“…In Uganda, regular VL monitoring is done at the Central Public Health Laboratory through the districts’ laboratory hubs and in case of virological non-suppression, that is; two consecutive viral loads above 1000 copies/ml done at least 3–6 months apart [ 8 ], 3 sessions of intensive adherence counseling (IAC) are offered. IAC is offered to the caregiver or to both the child and the caregiver at one-month intervals by mainly counselors although at times by nurses, clinicians and peer-educators [ 9 ]. After the third session, a post-IAC VL test is done and if suppressed, the patient continues with usual treatment and repeats VL test after a year [ 10 ].…”

Fostering successful and sustainable collaborations to advance implementation science: the adolescent HIV prevention and treatment implementation science alliance

“…Eliminating HIV as a public health threat among adolescents depends heavily on successful implementation of efficacious interventions that address the context in which adolescents live. Across the HIV continuum of care, adolescents are less likely to be tested [4] and linked to care [5], have higher loss to follow-up [6], and worse adherence [7] and viral suppression rates [8] than their adult counterparts despite evidence for appropriate treatment and care [9]. A number of factors, including youth-friendly health services, gender-based violence, harmful cultural and social norms, limit the uptake of health services within this population.…”