Starting a cultural collective for mothers of children with disabilities: A case study

Abstract

Background: Caring for children with disabilities in Tanzania involves significant challenges, including stigma, limited support and mental health risks. A cultural collective for caretakers of children with disabilities enrolled at a primary school was established to address these issues.

Objectives: The study aims to explore the experiences of caregivers who started a cultural collective and to assess its impact on their lives in the short term.

Method: This study used a community-based participatory research (CBPR) approach with a sequential mixed-methods design. Data were collected over a period of 8 weeks, while the participants in this study established a collective in Dar es Salaam. Quantitative data were analysed using descriptive statistics, and qualitative data were analysed using Braun and Clarke’s method for thematic analysis.

Results: As assessed by a validated and normed questionnaire, Patient Health Questionnaire-9 (PHQ-9), 63% of the caregivers showed signs of depression before starting work in the collective. Economic needs, education and the desire for support were the primary motivations for joining. Starting the collective improved social support, fostered agency and began to enhance caregivers’ financial conditions.

Conclusion: The collective addressed caregivers’ needs for economic improvement, social support and mental support, and the experience was vitalising for the caretakers.

Contribution: This study deepens our understanding of holistic interventions for children with disabilities and their families in urban Africa. It offers valuable insights into a crucial stage of developing contextually relevant interventions for vulnerable, poverty-stricken populations. It provides a model that can be adapted for similar interventions in comparable contexts.