Możliwość chirurgicznego leczenia, przeszkody i wspierające czynniki w operacyjnym leczeniu epilepsji u dzieci w szpitalu St. Francis Nsambya: badanie metodą mieszaną
Surgical Candidacy, Barriers, and Facilitators of Pediatric Epilepsy Surgery at St. Francis Hospital Nsambya: A Mixed Methods Study
W skrócie
Badanie pokazało, że u czterech na dziesięciu dzieci z epilepsją w Ugandzie istnieje możliwość leczenia chirurgicznego, które mogłoby poprawić kontrolę napadów i jakość życia. Jednak główne przeszkody to brak informacji, strach przed operacją, problemy finansowe i niepewność rodzin, podczas gdy pomocne są rzetelna wiedza, wsparcie pracowników medycznych i pozytywne doświadczenia innych. Autorzy zalecają lepszą edukację społeczeństwa i wzmocnienie możliwości systemu opieki zdrowotnej, aby więcej dzieci mogło skorzystać z tego rodzaju leczenia.
Oryginalny abstract (angielski)
BACKGROUND: Epilepsy is the most common neurological disorder among children. Despite evidence showing that epilepsy surgery improves seizure control, quality of life, and cognitive outcomes, it remains severely underutilized in Uganda. This study aimed to determine the proportion of children who are epilepsy surgery candidates and to explore its barriers and facilitators. METHODS: A sequential explanatory mixed-methods study was conducted at St. Francis Hospital Nsambya. Consecutive records of 110 children aged 2-18 years with confirmed epilepsy provided data for the quantitative phase. Surgical candidacy was defined by concordant magnetic resonance imaging and electroencephalography abnormalities; generalized epilepsies were excluded. Qualitative data was obtained by purposive in-depth interviews with four caregivers of operated and five caregivers of non-operated children as well as four health workers. Quantitative data were analyzed using STATA 17 and qualitative data thematically. RESULTS: Of the 110 children enrolled, majority (77; 70%) were aged 2-9 years and 58 (52.7%) were males. Overall, 42 (38.2%) (95% confidence interval: 29.5%-47.7%) were eligible candidates for epilepsy surgery. Hemiparesis and use of multiple anti-seizure medications were more common among surgical candidates. Major barriers included information gaps, misinformation, fear of surgical risk, financial limitations, negative cultural or religious beliefs, and discouragement from social circles. Facilitators included accurate information, empathy, and shared caregiver experiences, hope, faith in God, pivotal health events such as intensive care unit admission. CONCLUSIONS: Four in ten children with epilepsy are potential surgical candidates. Strengthening community engagement, addressing knowledge gaps, and building health system capacity are essential in optimizing pediatric epilepsy surgery in Uganda.