Talk 4: Ghana’s Update on Spina Bifida and Hydrocephalus Management Talk 5: How to Ensure Effective Participation of Disabled Children in Decision-making Processes: a Case

Patrick Essuman

Rickmes Foundation, Ghana

Background: In Ghana, not much is known about Spina Bifida and Hydrocephalus (SBH) and its management. According to Ofori et al, out of 6, 550 CT head examinations that were carried out between 2007- 2012, 251 (representing about 3.8% ) were cases of Hydrocephalus. In the Northern region of Ghana, the prevalence of neural tube defects (NTDs) is 1.6 per 1000 births. Korle Bu Teaching Hospital estimates that every week, five new cases of SBH are recorded, with a total of 260 cases in a year. It has been an unpleasant observation that persons with SBH and their caregivers have been experiencing family conflicts, feeling of loneliness, rejection of their self- worth by friends and family members, ridicule and mockery, alienation, and financial constraints.

Methods: Rickmes Foundation has embarked on public education tours, seminars/training, observation of SBH international days, and provided financial support to raise awareness about the conditions. The organization envisions to conduct a research on SBH in Ghana, conduct mass surgeries project to reduce the backlog of SBH cases in the health facilities, and to initiate annual SBH conference in the coming years.

Results: The knowledge of Ghanaians about SBH has been improved through different educational and awareness raising programs, and networking events. Many support has also been provided for persons living with these conditions and their carers such as free diagnostic and medical care.

Conclusions: Spina Bifida and Hydrocephalus are socio- medical conditions which need both social and medical interventions in managing them. Poverty has remained the major barrier in accessing healthcare among persons with SBH and their caregivers in Ghana.