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

Abstract

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 bifida 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.

Ugandan Teachers Epistemological Beliefs and Child-Led Research: Implications for Developing Inclusive Educational Practice

“…One possibility is that this again reflects a lack of experience with pedagogical models that support inclusive classroom practice and that, without these models, the prevailing practices act as barriers to inclusion (Arbeiter & Hartley, 2002). Additionally this may be influenced by the stigmatisation of children with special educational needs (Arbeiter & Hartley, 2002;Jagire, 2015;Mbazzi, 2017). Previous research has concluded that 'There is no evidence to date that differences in belief patterns are related to length of teaching experience, to class size or elementary school grade level' (Jordan, 2013, p11).…”

‘They Give Him a Chance’- Parents’ Perspectives on Disability and Inclusive Primary Education in Uganda

“…Based on our findings and other alternative discourses from the global South we would like to propose a change in order of the widely used concepts of being, belonging, and becoming in disability studies (Bannink, 2016;Brown, 2003;Hall, 2010;Woodill, Renwick, Brown, Raphael, & Goode, 1994). We propose a framework in which belonging (the attachment to people and places in a person's life) is placed before being (who the person is) and becoming (things the person does through life).…”

“…An individual's place in society is defined by role or status in the family, clan, and tribe (Asiimwe, 2002). The concept of obuntu bulamu defines behaviour towards others, including how children are raised, and protected (Bannink, 2016). A Luganda proverb says 'Awali omulema tewafunyirwa lunwe' -you should not offend a disabled person (Cobbinah, 2013), calling on people to respect people with a disability.…”

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

“…Having embraced the Education for All objectives and Child Protection Guidelines, there is need for the Ministry of Education and Sports, and the Ministry of Gender, Labour and Social Development to critically look at the way children are involved and taught in class, and to take greater steps to ensure bullying is prevented and responded to for all children. Social inclusion and inclusive services need to be integrated in general poverty reduction (Bannink, 2016).…”

“…We argue for the use of child friendly interview tools, and using a family approach in which childhood is studied from the child's, siblings', parental, and other household members' perspective. In African Childhood Disability Studies, we argue to focus on belonging first -through 'ubuntu' ('I am because we are' or 'humanity to others') the person is defined and becomes -before looking at being, and becoming (Bannink, 2016).…”