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

Autor: Laura Kiwala, Patience A. Muwanguzi, Esther Nasuuna, Damalie Nakanjako, Nelson K. Sewankambo, Joyce Babirye, Alex Muganzi, Joanita Kigozi
Rok vydání: 2019
Předmět:
Counseling
Male
Paediatric HIV
Sustained Virologic Response
Social Stigma
HIV Infections
Peer support
Health administration
0302 clinical medicine
Uganda
030212 general & internal medicine
Child
10. No inequality
Qualitative Research
lcsh:Public aspects of medicine
4. Education
030503 health policy & services
Health Policy
Nursing research
1. No poverty
Attendance
Focus Groups
Middle Aged
Viral Load
3. Good health
Caregivers
Female
Thematic analysis
0305 other medical science
Research Article
Adult
medicine.medical_specialty
Adolescent
Adherence counselling
education
Medication Adherence
Young Adult
03 medical and health sciences
medicine
Humans
business.industry
Public health
lcsh:RA1-1270
Viral suppression
Focus group
Family medicine
Patient Compliance
Health Facilities
business
Qualitative research
Zdroj: BMC Health Services Research
BMC Health Services Research, Vol 19, Iss 1, Pp 1-10 (2019)
ISSN: 1472-6963
DOI: 10.1186/s12913-019-3963-y
Popis: 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.
Databáze: OpenAIRE