Social inclusion, care, and belonging of children with spina bifida : perspectives from Uganda

This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalization and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida. Families and private non for profit organisations are the main providers of care of the children. Children with spina bfida had a more negative perception of themselves, were less likely to be in school, and had lower cognitive outcome compared to their siblings. Daily functioning and social inclusion were affected by motor function, incontinence, lack of support for caregivers, low household income, limited resources and knowledge of inclusive teaching, bullying, and inaccessibility of public transport, roads, and buildings. Positive experiences of belonging were found at family and household level and were closely related to the ‘ubuntu’ concept. When a child belongs, the child has a chance to live, to participate, to become, to be included. To facilitate inclusion, families need to be supported, and negative attitudes and behaviour of community members, teachers, and health workers need to be addressed. Key words: disability, inclusion, spina bifida, Uganda, Afric

Mobility, incontinence, and social functioning of children with spina bifida in Uganda

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Parental strees and support of parents of children with spina bifida in 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; Afric