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

Esther Nasuuna,Patience A Muwanguzi,Joyce Babirye,Nelson Sewankambo,Alex Muganzi,Damalie Nakanjako,Joanita Kigozi,Laura Kiwala

doi:10.1186/s12913-019-3963-y

Esther Nasuuna, Patience A Muwanguzi + Show 6 more

Open Access

https://doi.org/10.1186/s12913-019-3963-y

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Abstract

BackgroundOf 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.MethodsA 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.ResultsOverall, 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 conclusionTo 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.

Highlights

Of the estimated 130,000 children living with Human Immunodeficiency Virus (HIV) in Uganda, 47% are receiving Anti-Retroviral Therapy (ART)
Characteristics of the study participants Five focus group discussions (FGD) were conducted with 37 participants. 29 were female, 28 were HIV positive, 25 were biological parents of the children, 9 were relatives and 3 were well-wishers
Challenges that caregivers face in supporting virally non suppressed children in the intensive adherence counselling (IAC) program achieve viral suppression The elicited challenges were in two main areas; supporting the children to attend and complete the IAC program and supporting them to improve adherence to the ART medications

Summary

Introduction

Of the estimated 130,000 children living with HIV in Uganda, 47% are receiving ART. We investigated the challenges and potential support required by caregivers of ART-treated children. Uganda has an estimated 130,000 children living with HIV and 47% of them are currently on ART [10]. It is important that children are supported to achieve protracted viral suppression during the lifelong ART in order to benefit from it [12]. Caregivers, face a multitude of challenges in taking care of HIV positive children; these include depression, lack of food, protracted time off work, loss of employment, stigma from the community, lack of family support and anxiety about death [20,21,22,23,24]

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