To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

This article describes the findings of a qualitative study on knowledge, beliefs, attitudes, and practices towards children with spina bifida and hydrocephalus in four regions of Uganda. Focus group discussions and semi-structured interviews were held with parents of children with spina bifida and hydrocephalus, policy-makers, and service providers. Our findings describe how negative knowledge, beliefs, attitudes, and practices create barriers to treatment and inclusion of children with spina bifida and hydrocephalus and their parents in Uganda. The findings show how knowledge, beliefs, attitudes, and practices evolve over time, are both similar and differ in the various regions, and become more conducive towards accessing treatment and achieving inclusion. Sensitisation and early intervention including parents and service providers in dissemination of knowledge, rehabilitative care to set the trend for positive change and support, as well as longitudinal studies of children with spina bifida and hydrocephalus and their parents are recommended

Objective The aim of the research was to explore the barriers to healthcare access for persons with various disabilities in rural Luuka district of Uganda. The findings will assist in appreciating the challenges persons with disabilities face in accessing Healthcare in a rural setting. These insights will contribute to the development of an intervention to improve healthcare access that is affordable, timely and acceptable. Design and participants This qualitative study formed the exploratory formative phase of the ‘Missing Billion’ project. A total of 27 participants with disabilities—visual impairment (n=5), physical impairment (n=5), multiple impairments (n=6) and intellectual/ cognitive impairment (n=5) were purposively selected to participate in in-depth interviews conducted by two experienced researchers. Participants were identified through contact lists provided by the district disability focal person and local disability associations, with additional participants identified through snowball sampling. Interviews with persons with hearing impairment (n=6) were conducted by a researcher with hearing impairment. The interviews were audio/video recorded and transcribed to facilitate thematic data analysis. We used the disability-inclusive health ‘Missing Billion’ framework to map and inform the barriers. Setting The study was conducted between September and November 2022 in rural communities in Luuka district, Eastern Uganda. Findings On the demand side, challenges revolved around autonomy and awareness, limited access to health information, lack of financial capacity and dependence on caregivers for healthcare choices left persons with disabilities feeling disempowered. On the supply side, discrimination and negative attitudes from healthcare workers were reported as prevalent. Absence of healthcare workers and service delivery delays impacted on healthcare access, resulting in poor care. Inaccessible healthcare facilities compounded issues, as they had limited accessibility features. Conclusions Complex and interconnected barriers underscore the pressing need for systemic changes to ensure equitable healthcare access for persons with disabilities in rural Uganda.

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.Keywords: Parents; Stress; Spina Bifida; Disability; Africa

Inclusive education interventions in low-income countries are dominated by definitions and frameworks from disability studies and educational research scholars from high-income countries. Disability studies scholars have argued for valuing diverse understandings and a different discourse when studying disability and inclusion in low-income countries. In this paper, we explore the meaning of belonging and inclusion to parents of children with disabilities in central Uganda. Through case study analysis we aim to give alternative starting points for inclusive primary education programmes. We explore the themes ‘missing parts’, the ‘ability to manage’, ‘belonging to a family’, and ‘being given a chance’ as key concepts of disability and inclusion. We argue not to translate parents’ descriptions into international categories and framework, but to reflect on the larger and underlying meaning of the concepts to form a more culturally embedded and relevant starting point of education for all. We propose to address the gaps of the postcolonial education system that has taken teachers’ and families’ away from the concept of ‘obuntu bulamu’, and focus interventions on re-creating this togetherness and value the strength of concepts of belonging and caring for each other.