"The International Federation for Spina Bifida and Hydrocephalus (IF) together with the European Disability Forum (EDF) and the European Patients Forum (EPF) conducted a survey among their networks to assess the impact of the Directive 2011/24/EU on the application of patients’ rights in cross border healthcare (crossborder healthcare Directive) on persons with disabilities and chronic conditions in the EU. The findings of the survey showed low awareness and low use of the Directive. A vast majority of 85% has never used crossborder healthcare even though 69% of respondents might have used it had they received information about it. Approximately three quarters (77%) of respondents have never heard about the Directive"
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, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida
Afrika Focus, vol 30, no. 1, 2017, pp. 130-136
"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities.
Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."
This is a training manual for community based rehabilitation workers based upon physiotherapist's work on a rehabilitation project in Cape Town, South Africa. The manual is aimed at trainers of rehabilitation workers who are assumed to have adequate medical knowledge. The manual is divided into the following 4 main topics: health in the community; normal body functions; conditions and treatment; management of patients. Each section contains a summary of the learning aims for the rehabilitation workers, and the teaching is based mainly on a question and answer format
Note: originally published in 1990 by SACLA Health Project
Hydrocephalus and spina bifida are life threatening conditions that often result in severe dsabilities. Risks are much reduced by immediate surgery and careful managment, but neither has been available for most of the sub-Saharan African population. This paper traces the growth of solutions and some socio-cultural resources that historically have supported family and community care for children with severe disabilities, mainly in Tanzania, and nearby countries. Some community-based rehabilitation (CBR) work with children with spina bifida and hydrocephalus is described, and challenges to the CBR approach are noted from the increased survival of people with disabilities requiring complex care. More appropriate information, recognition of indigenous knowledge, enlistment of community resources and financial assistance are needed to enhance the lives of East Africans with hydrocephalus, spina bifida and other severely disabling conditions
This manual explains the types, signs and causes of spina bifida and hydrocephalus describing how to assess the child’s level of development and complications. It gives suggestions on how to promote the child’s normal development, mobility, self-care and education with examples of equipment that can be made from local materials
Source e-bulletin on Disability and Inclusion