The purpose of the study was to understand the experiences of families in accessing government support (i.e., disability allowances and rehabilitation services) for their children with disabilities...

Background: The term ‘last mile’ has been used across disciplines to refer to populations who are farthest away, most difficult to reach, or last to benefit from a program or service. However, last mile research lacks a shared understanding around its conceptualization. Objectives: This project used a concept mapping process to answer the questions: what is last mile research in global health and, how can it be used to make positive change for health equity in the last mile? Methods: Between July and December 2019, a five-stage concept mapping exercise was undertaken using online concept mapping software and an in-person consensus meeting. The stages were: establishment of an expert group and focus prompt; idea generation; sorting and rating; initial analysis and final consensus meeting. Results: A group of 15 health researchers with experience working with populations in last mile contexts and who were based at the Matariki Network institutions of Queen’s University, CAN and Dartmouth College, USA took part. The resulting concept map had 64 unique idea statements and the process resulted in a map with five clusters. These included: (1) Last mile populations; (2) Research methods and approaches; (3) Structural and systemic factors; (4) Health system factors, and (5) Broader environmental factors. Central to the map were the ideas of equity, human rights, health systems, and contextual sensitivity. Conclusion: This is the first time ‘last mile research’ has been the focus of a formal concept mapping exercise. The resulting map showed consensus about who last mile populations are, how research should be undertaken in the last mile and why last mile health disparities exist. The map can be used to inform research training programs, however, repeating this process with researchers and members from different last mile populations would also add further insight.

Background: Inclusive education is internationally recognised as the best strategy for providing equitable quality education to all children. However, because of the unique challenges they often present, children with intellectual and developmental disabilities (IDDs) are often excluded from inclusive schools. To date, limited research on inclusion has been conducted involving children with IDD as active participants.Objectives: The study sought to understand the experiences of children with IDDs in learning in inclusive schools in Accra, Ghana.Method: A qualitative descriptive design was utilised with 16 children with IDDs enrolled in inclusive schools in Accra, Ghana. Participants were recruited through purposive sampling and data were collected using classroom observations, the draw-and-write technique and semi-structured interviews. The data were analysed to identify themes as they emerged.Results: Children’s experiences in inclusive schools were identified along three major themes: (1) individual characteristics, (2) immediate environments and (3) interactional patterns. Insights from children’s experiences reveal that they faced challenges including corporal punishment for slow performance, victimisation and low family support relating to their learning.Conclusion: Although children with IDDs receive peer support in inclusion, they experience diverse challenges including peer victimisation, corporal punishment and low family and teacher support in their learning. Improvement in inclusive best practices for children with IDD requires systematic efforts by diverse stakeholders to address identified challenges.

There has been increasing attention to quality of life for families supporting children with disabilities internationally; however, there is minimal research on family quality of life (FQOL) in low-income countries, and specifically in African contexts. This study explored how Ethiopian families of children with disabilities conceptualised FQOL and what they perceived their support needs related to FQOL were. Using a qualitative exploratory descriptive design, we interviewed Ethiopian family members of children with various disabilities. Audio-recorded interviews were transcribed verbatim and translated into English with professional translation assistance. We analysed translated transcripts inductively based on Braun and Clarke’s approach to thematic analysis. We found that spirituality was core to families and that they described FQOL in terms of their relationships within the immediate family and with the community. Additionally, families wanted to be self-sufficient and provide for themselves, but with the additional challenges of raising a child with a disability and pervasive poverty, they recognised their need for more support. Therefore, providing holistic, family-centred services to Ethiopian families of children with disabilities can contribute to enhancing FQOL.