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Description
According to the Polish Register of Fetal Defects (Polski Rejestr Wad Wrodzonych), 100-120 children are born with spina bifida each year. Poland is one of few countries in Europe that has not adopted a national spina bifida plan. For patients, this means there is no reliable information, information is provided in a chaotic manner, and endless hospitalization that excludes them from the community in which they function. The aim of the project is to enable people with spina bifida to become self-reliant by creating a network of coordinated care: educational, medical, and mental support. In the SPINA Workshop (Pracownia SPINA), unique workshops will be conducted on urinary tract hygiene and bowel hygiene for families, and workshops and psychological counselling will be provided for young people and schoolchildren. We will also organize training for medical personnel, and two conferences for people receiving care, parents, and medical personnel on the latest options regarding treatment. The SOS Program (Program SOS) (visible information about the services available and contact details) will be introduced in medical centers through Poland. We will publish an updated Information Pack (Zeszyt Informacyjny) with a compendium of information on methods of treatment, access to services, and rights of persons who have spina bifida. We will create a network of volunteers throughout Poland (parents of older children with spina bifida or adults who have the condition) who will be able to provide support for families with disabled children once they have received the appropriate training (15 training sessions and three meetings on psychology and education on medical issues). Support will be provided for 50 families (130 people) and 30 volunteers will be trained. We will disseminate information about the illness in 40 medical centers, and also publish 2000 copies of the Information Pack.
Summary of project results
The project responds to the need to make children with spina bifida independent. According to the Polish Congenital Defects Registry, 100-120 children with spina bifida are born in Poland every year. Despite being one of the most common congenital malformations in Poland, Poland is one of the few European countries that has not adopted a national plan for spina bifida and has not included patients in coordinated care. For patients, this means a lack of reliable information, communication chaos, and repeated and prolonged hospital admissions that isolate them from their environment. Children with spina bifida face a lack of acceptance at school, not only because of their motor deficits, but also because of poor hygiene, visible diapers, the use of catheters, and so on. The high birth rate of children with spina bifida means that a large group of patients and their carers need planned, coordinated support.
The project created an educational, medical and psychological support network for people with spina bifida and their families. The Project Promoter organised urotherapy, urinary and bowel hygiene, nutrition and diet workshops, and orthopaedic workshops for them. Social skills training was provided to a group of children and adolescents, and individual psychological support was provided to families and children. Five conferences were organised for people with spina bifida, their families and medical staff, focusing on the latest treatment options. 30 volunteers were trained - these individuals attended a series of 15 training courses on psychology, communication, direct support to parents, etc., in order to be able to provide intervention support to families with children with spina bifida. An updated ''information booklet'' has been published, providing a compendium of knowledge on treatment methods, access to services and entitlements for people with spina bifida. The Project Promoter has established cooperation with 40 medical facilities - hospitals, clinics, gynaecological clinics, outpatient clinics - in which it has hung information boards and signed cooperation agreements with most of them.
Without a doubt, the main beneficiaries of the project have been people with spina bifida and their families. 178 families participated in the workshops, 40 families were supported by volunteers. These people received specific support - interventional, emotional, informational - which was an important step towards the empowerment of children with spina bifida. Cooperation has been established with medical and educational institutions, including outpatient clinics and smaller health care facilities used by people with spina bifida. An important outcome of the project is the creation of a network of volunteers who provide comprehensive support to families of people with spina bifida.