Barriers and facilitators to adherence to clinic appointments among children with sickle cell anaemia attending Mulago National Referral Hospital, Uganda: A qualitative study.
DOI:
https://doi.org/10.51168/56gzvs82Keywords:
Sickle cell anaemia, clinic appointment, barriers, caregivers, UgandaAbstract
Background:
Adherence to clinic appointments is essential for effective management of sickle cell anaemia (SCA) in children. However, caregivers may face financial, caregiver, health-system, and sociocultural barriers to regular attendance. This study explored barriers and facilitators to adherence to clinic appointments among children with SCA aged one to 14 years attending the Mulago National Referral Hospital (MNRH) Sickle Cell Clinic (SCC).
Methods:
A qualitative exploratory study nested within a larger cross-sectional mixed-methods study was conducted at the MNRH SCC from January to June 2023. Ten caregivers participated in in-depth interviews (IDIs) and 10 healthcare workers in key informant interviews (KIIs). Purposive maximum-variation sampling was used, and data collection continued until saturation. Interviews were audio-recorded, transcribed verbatim, translated where necessary, and analysed thematically using the Socio-Ecological Model (SEM).
Results:
Seven major barrier themes were identified: financial and geographic access constraints; limited perceived value of clinic attendance; scheduling conflicts and competing responsibilities; drug stockouts and supply challenges; long clinic waiting times; inadequate communication and appointment coordination; and cultural beliefs, alternative health-seeking, and non-acceptance of SCA. Facilitators included caregiver health literacy, biological parental responsibility, and female caregiver engagement. An unexpected finding was that informal caregiver networks helped families identify when medicines had been restocked, temporarily increasing attendance. Among caregivers, 8/10 were female, 6/10 were biological parents, and ages ranged from 18 to 58 years.
Conclusions:
Adherence is shaped by interacting structural, caregiver, health-system, and sociocultural factors.
Recommendations:
Strengthening medicine availability, improving caregiver education and appointment reminders, reducing waiting and access barriers, offering more flexible scheduling, and engaging fathers and non-biological caregivers.
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Copyright (c) 2026 Mwoko Faisal, Joshua Kitimbo, Mupere Ezekiel, Geriga Fadhil, Grace Ndeezi
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