Gotowość opiekunów do uczestnictwa w poradni epilepsji dla swoich dzieci i związane z tym czynniki w Ifakarze, Tanzania: badanie jakościowe
Caregivers' Readiness to Attend Epilepsy Clinic for Their Children and Associated Factors in Ifakara, Tanzania: An Exploratory Qualitative Study
W skrócie
Badanie pokazuje, że gotowość opiekunów do zawozu dzieci na wizytę do poradni epilepsji w Tanzania zależy od wielu czynników: lęku i wstydu związanego z chorobą, zaufania do lekarzy, problemów finansowych i transportu, a także wsparcia rodziny. Naukowcy przeprowadzili rozmowy z 12 matkami i opiekunami dzieci z epilepsją. Wyniki wskazują, że aby pomóc dzieciom chorym na epilepsję, trzeba zminimalizować stygmatyzację choroby, poprawić dostępność opieki medycznej i wzmocnić wsparcie społeczności lokalnej.
Oryginalny abstract (angielski)
INTRODUCTION: Epilepsy is a common neurological disorder impacting children globally, with timely diagnosis and treatment being essential for optimal health outcomes. However, sub-optimal clinic attendance among children living with epilepsy, particularly in resource-limited settings like Tanzania, presents a significant challenge to effective care. This study explored caregivers' readiness to attend epilepsy clinics for their children and the factors influencing this readiness in Ifakara, Tanzania. METHODS: This exploratory qualitative study used in-depth interviews with caregivers of children living with epilepsy in Ifakara, Tanzania. Participants were purposively selected to gather diverse perspectives and experiences. Data collection continued until thematic saturation was achieved, resulting in 12 comprehensive interviews. Inductive thematic analysis was employed to systematically identify, analyze, and report patterns and themes within the transcribed data. RESULTS: The study included 12 caregivers, predominantly mothers, with varying educational and employment backgrounds. Five key themes emerged that illustrate the complex factors shaping caregivers' readiness: emotional and social impact of epilepsy (e.g., fear, stigma, isolation), perceived benefits and challenges of clinic services (e.g., trust in healthcare providers, long wait times, medication availability), socioeconomic barriers (e.g., financial constraints, transportation difficulties), the crucial role of social support from family and community, and the impact of knowledge and awareness on engagement with care. CONCLUSION: This study reveals that caregivers' readiness to attend epilepsy clinics for their children in Ifakara is influenced by a nuanced interplay of emotional, social, logistical, and economic factors. The findings underscore the critical need for multifaceted, context-specific interventions that address epilepsy-related stigma, improve accessibility and affordability of healthcare services, enhance caregiver knowledge, and strengthen community support networks to optimize care for children living with epilepsy in similar resource-constrained environments.