Attitudes and beliefs of parents of children with disabilities in Uganda

Abstract

Background. Little is known about the experience of carers of children with disabilities in Uganda, where child disability constitutes 31.4% of all disabilities. This study examined the experiences, beliefs, and attitudes of parents/ main carers of children with disabilities, and the challenges they face, in order to optimize rehabilitation strategies for the child and their family. Methods. Qualitative data were collected from ten semi - structured interviews with eight main carers children receiving rehabilitation in rural Uganda. Results. Three main themes were identified: (1) experiences, (2) beliefs, and (3) attitudes of the parents/ main carers. Carers experienced emotional stress and many life changes as the burden of care fell primarily on them. A lack of knowledge and information about disability amongst carers, resulted in alternative beliefs about treatment. Social stigma towards disability remains an issue within Ugandan society. Conclusions. Family centered rehabilitation should be incorporated into rehabilitation programmes to decrease burden of care upon the main carer. Health care practitioners are in a strong position to educate families about causation, diagnosis, and prognosis of a child’s condition, but such services should be improved through community education about disability and facilitated with the development of parental support groups.