Qualitative case study reveals adaptive caregiver strategies and systemic barriers among parents of children with intellectual disabilities, suggesting a need to formalize support networks.
Mutual partnerships between school staff and parents of children with disabilities are essential for establishing robust frameworks of inclusive education. This study adopted a qualitative case study design to examine the practices, perceptions, and structural barriers shaping parental involvement in the education of learners with intellectual disabilities at Uhuru Mchanganyiko Primary School in Dar es Salaam—a historically significant site as the first institution in Tanzania to practice integration and a current model inclusive center for national policy implementation. Guided by an abductive thematic analysis, the study utilizes and critically interrogates Epstein’s (2019) Spheres of Influence framework within a Sub-Saharan urban ecosystem. Using multi-stage purposive sampling via institutional gatekeepers, a final sample of 30 participants was recruited: 22 parents (4 male, 18 female), 4 special education teachers, and 4 administrators. Data collection involved institutional document analysis (school policies, meeting minutes, and involvement records) triangulated against 14 individual semi-structured interviews and two distinct focus group discussions conducted in Kiswahili. The findings reveal highly adaptive, context-driven strategies where parents—predominantly mothers—exert significant personal agency, investing massive “invisible labor” into home-school supervision and pioneering informal, oral face-to-face communication pathways that bypass rigid, Western-centric written protocols. Furthermore, the emergence of the parent-led “Uhuru Mama Collective” demonstrates how traditional school volunteering can be revolutionized into a potent mechanism for collective economic coping, mental health preservation, and public advocacy to dismantle local animistic stigmas. However, these localized successes are continuously undermined by severe macro-structural walls, including chronic state underfunding, intense situational time poverty, and systemic economic vulnerability. The study underscores the critical need to transition from symbolic models of inclusion to structural ones by formalizing micro-collectives, embedding parental experiential expertise into Individualized Education Plans, and anchoring inclusive schools within wider social protection nets.
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Mariana J. Makuu (2026) studied this question.
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