Contextualizing sociocultural beliefs about cleft, knowledge of the treatments, and factors associated with delay of treatment in Eastern Indonesia

Abstract

Introduction: Indonesia is a multicultural Asian country with a high incidence of cleft. This study contextualizes how patients' sociocultural backgrounds hinder cleft management in a diverse nation. Material and methods: This study involved 202 families of cleft patients attending six tertiary care hospitals in South Sulawesi between 2021 and 2022. A mixed-methods, descriptive cross-sectional study employed semi-structured interviews and focus group discussions. Thematic content analysis was done using Murdock's causal attribution of illness. Knowledge of the treatments and surgery expectations used open coding. We held medical team focus group discussions to validate education on treatments. Cleft management education was thematically analyzed based on Indonesia's Minister of Health Decree. Results: Two hundred-two families and ten medical teams participated. Thematic content analysis revealed common beliefs and factors that hinder medical treatments. The participants were 109 Buginese, 57 Makassarese, 16 Durinese, 8 Luwunese, 8 Torajanese, and 4 Mandarese. 22.3 % were unaware of causation, while 29.2 % attributed it to natural causes. About half of the interviewees believed in supernatural attribution. Even though 40 % of participants knew little about the surgery, they agreed that surgery improves appearance and speech. Medical treatments are delayed due to a lack of treatment knowledge, parents' concerns about surgical safety, and beliefs about causes. Discussion: Indigenous societies in South Sulawesi believe in supernatural causes of cleft. Most had incomplete surgical treatment information. An intensive educational health program about causes, treatments, medical specialists, and treatment goals is warranted to enhance patient compliance with medical treatment, ultimately leading to improved health outcomes.