PURPOSE: To explore community nurses' perspectives on adolescent suicide prevention in Indonesia, focusing on how suicide risk becomes visible or remains hidden, how nurses understand their preventive roles, the barriers that constrain action, and the support and system conditions needed to strengthen practice.
METHOD: A descriptive qualitative study was conducted in Bandung, West Java, Indonesia with 14 purposively selected community nurses. Individual semi-structured interviews were analyzed using a codebook-oriented thematic analysis. Reporting was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ).
RESULTS: Four interpretative themes were developed: suicide risk is socially hidden before it becomes clinically visible; community nurses function as relational gatekeepers whose effectiveness depends on trust; normative stigma and professional uncertainty constrain preventive action; and nurses are expected to coordinate across sectors without sufficient structural enablement. Participants described shame, fear of judgment, family responses, and religious or moral sensitivities as shaping disclosure and help-seeking. They also described roles in mental health education, early recognition, supportive communication, family engagement, and referral, while emphasizing limited suicide-specific training, unclear pathways, and fragmented school-family-health service coordination.
CONCLUSIONS: Community nurses occupy a potentially important social-psychological and service-system position in adolescent suicide prevention in Indonesia. Their effectiveness depends not only on individual knowledge but also on the social conditions that make disclosure safe and help-seeking legitimate, together with clear protocols, referral pathways, cross-sector collaboration, and institutional support within existing Indonesian adolescent and primary-care platforms.
METHODS: This multicenter study addressed the course of disease for each organ system. Metabolic, neuroradiological, and genetic findings are reported.
RESULTS: Sixty-seven individuals (39 previously unreported) from 59 families were included (age range = 5 days-33.4 years, median age = 9 years). A total of 41 different SERAC1 variants were identified, including 20 that have not been reported before. With the exception of 2 families with a milder phenotype, all affected individuals showed a strikingly homogeneous phenotype and time course. Severe, reversible neonatal liver dysfunction and hypoglycemia were seen in >40% of all cases. Starting at a median age of 6 months, muscular hypotonia (91%) was seen, followed by progressive spasticity (82%, median onset = 15 months) and dystonia (82%, 18 months). The majority of affected individuals never learned to walk (68%). Seventy-nine percent suffered hearing loss, 58% never learned to speak, and nearly all had significant intellectual disability (88%). Magnetic resonance imaging features were accordingly homogenous, with bilateral basal ganglia involvement (98%); the characteristic "putaminal eye" was seen in 53%. The urinary marker 3-methylglutaconic aciduria was present in virtually all patients (98%). Supportive treatment focused on spasticity and drooling, and was effective in the individuals treated; hearing aids or cochlear implants did not improve communication skills.
INTERPRETATION: MEGDHEL syndrome is a progressive deafness-dystonia syndrome with frequent and reversible neonatal liver involvement and a strikingly homogenous course of disease. Ann Neurol 2017;82:1004-1015.