Femke Bannink – Mbazzi's research on ‘Social Inclusion, Care and Belonging of Children with Spina Bifida: Perspectives from Uganda’ states among other things: At the family level, she argues for an extended family centered approach in interventions, in which parent support groups become family support groups and include grandparents, siblings and house-helps and focus on more involvement of fathers. Her conclusions show the way to improve lifelong care for our target group in Africa. Child-Help co-financed her research. Congratulations Dr. Femke!
On December 15th 2016 Femke Bannink – Mbazzi defended her Ph.D. on ‘Social Inclusion, Care and Belonging of Children with Spina Bifida: Perspectives from Uganda’ at Ghent University, Faculty of Psychology and Education Sciences, research group Disability Studies and Inclusive Education. Femke has lived in Uganda since 2003, and is an independent psychologist, trainer and advisor. She works with children and adults with disabilities, mental health problems, and learning difficulties in Uganda, and has been involved in IF’s programs in Uganda since 2009. This study was partly funded by the International Federation for Spina Bifida and Hydrocephalus and Child-Help.
In this mixed method study, 139 children with spina bifida and their families in four regions in Uganda were interviewed and observed in daily life situations between 2011 and 2016. Findings show how a complex interplay between traditional and biomedical medicine, poverty, the importance of ubuntu, and someone to help at home determines the outcomes of children in terms of health, social, cognitive, educational, and family functioning.
Recommendations for support for children with spina bifida in Uganda are as follows.
At the family level, Femke argues for an extended family centered approach in interventions, in which parent support groups become family support groups and include siblings and house-helps, and focus on more involvement of fathers.
At community level, further awareness raising and advocacy on disability using expert children, youth, and adults (as IF has started over the past year) to address inclusion is recommended to change attitudes and involvement, and enable children with spina bifida and their families to access care and support services at community level. The study outcomes show that more investment in community based rehabilitation (CBR) to improve mobility and care can improve schooling, social, and cognitive outcomes. Continuation of the IF supported CBR program is recommended. In addition awareness raising on the cognitive profiles of children with spina bifida and low cost practical inclusive teaching pilots for teachers to enhance participation and inclusion in schools are recommended.
At national level, implementation of the Convention of the Rights of Persons with Disabilities and policies to promote inclusion should be followed through and budgeted for. Focus on interdependence in implementation of these policies rather than independence and autonomy is recommended. Special attention should be paid to children in the northern region, which has been affected by war and has very poor inclusion of children with spina bifida.
Mandatory food fortification; sensitization of health workers and women on folic acid intake; and provision of supplies to health facilities are required to prevent neural tube defects. The study urges the Ministry of Health to make more efforts towards addressing physical and neuro-disabilities in the general health system, and make budget and staff available to implement low cost but specialized services in collaboration with development agencies.
Having embraced the Education for All objectives and Child Protection Guidelines, there is need for the Ministry of Education and Sports, and 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.