Background: Nodding syndrome is a neurological disorder which had affected about 3000 children with over 170 deaths in northern Uganda by 2012. With limited data on health seeking, the study aimed to assess the health seeking behavior and associated factors among caretakers of children with nodding syndrome in Pader district.
Methods: A mixed methods cross sectional study was conducted in July 2013 among 249 caretakers of children with nodding syndrome in three sub-counties of Pader. Respondents were consecutively interviewed using semi-structured questionnaires. Eleven key informants were additionally interviewed. We determined the associations of various factors with health care seeking and obtained adjusted odds ratios and 95% confidence intervals using logistic regression model. Quantitative data was analysed using Stata version 12 while qualitative data was analysed manually and quotes reported.
Results: Most caretakers, 78.3% (195/249) sought care first from a health facility, 12.9% (32/249) visited traditional healers and 8.8% (22/249) self-medicated. Of those who sought care from a health facility, 50% sought care after a month. Factors associated with improved care seeking included: Time taken to reach care 1-3 hours; adjusted odds ratio = 6.4 (95% CI = 2.96-14.03), time spent in care above five years; adjusted odds ratio = 12.0 (95% CI: 1.24-117.73) and changed care seeking place; adjusted odds ratio = 17.2 (95% CI: 3.64-81.67).
Conclusion/ recommendation: Caretakers sought care from multiple places. One in five caretakers still sought care outside a formal health facility. Many respondents who sought care first from health facilities went late, at least one month after symptoms onset. Factors associated with health seeking included distance, duration in treatment and not having changing care provider. There is need for massive sensitization of community to enhance prompt care seeking. More research is needed to elucidate the cause, thus finding the treatment for nodding syndrome, to prevent "wandering in hope".