Naslov
Spina bifida- challenges for the child and family in Croatia

Autori
Milić Babić, Marina ; Godeč, Milja

Vrsta, podvrsta i kategorija rada
Sažeci sa skupova, neobjavljeni rad, znanstveni

Skup
International Society on Early Intervention Conference

Mjesto i datum
Stockholm, Švedska, 08.06.2016. - 10.06.2016

Vrsta sudjelovanja
Poster

Vrsta recenzije
Nije recenziran

Ključne riječi
Spina bifida ; child ; family ; Croatia

Sažetak
Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. There are three main types: spina bifida occulta, meningocele, and myelomeningocele.The most common location is the lower back, but in rare cases it may be the middle back or neck. Spina bifida is believed to be due to a combination of genetic and environmental factors. After having one child with the condition or if one of the parents has the condition, there is a 4% chance that the next child will also be affected. Not having enough folate in the diet during pregnancy also plays a significant role. It is estimated that the direct and indirect health care costs for the lifetime treatment of a person diagnosed with Spina bifida can reach up to half a million euros (Yunni, Lindeman i Colligs, 2011). Various authors emphasize the importance of the coordinated service provision for children with Spina bifida which involves a multidisciplinary approach as means to optimize the clinical and the treatment outcome of children. Modern Western countries offer specialized services for children diagnosed with Spina bifida from their birth, as well as special centers which provide services exclusively for this condition. The aim of this study was to explore the challenges and experiences that parents of the children diagnosed with spina bifida have. Derived results are showing challenges that family of the diseased children are facing: the support of the medical staff is missing out, nobody gives information about rights that their children have in basis of disease and because the early intervention is missing for the children.

Izvorni jezik
Engleski

POVEZANOST RADA