Sociodemographic Influence on the Management of Orofacial Cleft in Urban and Rural Indonesia.

Abstract

Objective: To explore the social experiences of orofacial cleft patients and contextualize sociodemographic influence on management disparities in rural and urban areas of Indonesia.

Design: This study explores patients' lives in two demographical settings in South Sulawesi Province, Makassar and Selayar Islands Regency. It employs ethnography, including open-ended interviews and observations of patients, their neighborhoods, schools, and workplaces. Secondary data from the two regencies and South Sulawesi province are employed to demonstrate demographic disparities in patient care between urban and rural areas. Thematic content analysis was performed according to socio-demographical differences and networks involved in the management.

Participants: This study engaged a diverse group of participants, including patients, family caregivers, medical team members, and patient peers (n = 40), primarily from middle to low-income families.

Results: Parents in both regions had limited knowledge about treatment modalities, which resulted in concerns regarding the safety of surgical procedures and the postponement of mandatory surgeries. In rural areas, patients faced significant financial burdens when referred to Makassar. In contrast to parents in Selayar, parents in Makassar prioritized more social interaction to ensure that their children attended school, college, and work. Patients in both settings reported facing various obstacles at different stages of their lives.

Conclusions: Sociodemographic conditions contribute to disparities in treatment, social positioning, and self-perception. Promoting education about the safety of medical and rural surgical procedures is vital. Involving patients in public activities and providing support from family caregivers is paramount to nurturing patients' optimistic outlooks.