Las relaciones familiares, la dependencia y el cuidado de: perspectivas de los niños con espina bífida en el centro de Uganda

Resumen

In Uganda, public health and education services are poorly equipped to respond to needs of children with spina bifida. Such children are highly dependent on their families for care and support. In this study, we explore the children?s and their siblings? perceptions of family relationships, support, restrictions and care to inform policy and practice for the children and their families. Semi-structured interviews were held with 30 children with spina bifida, and 30 of their siblings in central Uganda. Using the Family Relations Test, we created a set of local dolls and culturally appropriate messages to evaluate the children's feelings about their family members and themselves. Our findings confirm a highly interdependent and supportive family care model in which mothers play a key role in the children?s lives and care; fathers are relatively absent for both children with spina bifida and their siblings; siblings, and other household members play an important role in the care and social inclusion of children with spina bifida; and children with spina bifida have more negative self-perceptions compared to their siblings. The internal family networks of children with spina bifida in Uganda are wide and varied, and characterized by higher support from mothers and elder siblings and househelps. We argue for an extended family centered approach in health care and social services, in which children with spina bifida, their parents (including their fathers), siblings, house-helps and other family members are included. We believe family led advocacy for inclusive care and support services on community and national level is key to enable a shift in the current service model and thinking about persons with disabilities in the country.