Early identification and referral of children with disabilities in Mainland Tanzania: A qualitative study using the system level analysis approach

Early detection of disabilities in children is widely recognized as essential. However, little is known about how these services are organized and delivered in countries with limited healthcare infrastructure and resources, where the need for disability inclusive interventions is greatest. This paper presents findings from a qualitative study which examined the existing systems and services for early detection of disabilities and referral support for children with and at risk of disability in Mainland Tanzania. The research draws on face to face in-depth interviews (n = 48 key informants) and focus group discussions (n = 3 FGDs) conducted between November 2024 and February 2025 with purposively selected stakeholders complemented by document review and stakeholder mapping. Data were imported into NVivo software for coding and thematic analysis. Findings reveal challenges in coordination between government ministries and NGOs, including inconsistent communication of policies and limited alignment between NGO-led efforts and national systems. We also found that while international definitions of disability are formally adopted, their practical application differs across sectors, leading to uncertainty around eligibility for services. Stigma and misinformation at the community level further hinder early detection and care-seeking behaviors. Furthermore, findings suggest that community health workers (CHWs), despite playing a vital role, often lack sufficient training and resources, and systems for documenting disability remain underdeveloped. Our study underscores the need for enhanced inter-agency collaboration, improving data systems and stakeholder coordination and strategic investments in workforce capacity-building. Strengthening referral systems and empowering families to recognize early signs of disability are critical to improving outcomes. • Weak coordination hinders early detection of disability in children in Tanzania. • CHWs vital but lack training, tools and consistent support. • Referral uptake low due to costs and limited specialist access. • Disability data fragmented; certification systems underdeveloped. • Policies exist but implementation gaps persist across sectors.