Informational Consultative Center for Families Having Children with Birth Defects and Congenital Pathology "Veselka"
Since 2006 in Khmelnytsky Medical Genetic Consultation there was started the realization of the Ukainian Social Investment Fund (USIF) project of Informational Consultative Center (ICC) for Families Having Children with Birth Defects (BD) and Congenital Pathology "Veselka".
Implemented by the Ukrainian-American Birth Defects Program and continued by OMNI-Net Ukraine Birth Defects Prevention Program BD monitoring according to international standards showed that prevalence of some birth defects (e.g. neural tube defects) is twice higher than the similar rates in countries of Western Europe (Yuskiv N, Andelin C, Polishuk S, Shevchuk O, Sosynyuk Z, Vigovska T, Yevtushok L, Oakley G, Wertelecki W. High rates of neural tube defects in Ukraine. Birth Defects Research (Part A): Clinical and Molecular Teratology 2004;70:400-402). The problem of fetal alcohol syndrome in children also gives concern.
However, just monitoring without care and early intervention violates basics of the medical bioethics.
The gained experience of BD monitoring informational support encouraged the successive and logical step - realization of the project "ICC for Families Having Children with BD and Congenital Pathology "Veselka" in partnership with USIF.
Needs of families with BD children were investigated by a group of volunteer students of the "Ukraine" University during February-March 2006.
Results of the survey showed that among the most urgent problems for families there are needs in treatment and rehabilitation, contemporary reliable information, communication, affiliation and integration into community, emotional support, love and acceptance, social and legal protection, and a need in help with children care and self-actualization (See pic. 1.).
Pic. 1. The survey results
The project is aimed to facilitate such urgent external changes as:
- Changes in public opinion (attitude, stereotypes):
- Preparing and spreading informational materials via mass media;
- Informing the community about the center activities;
- Sharing the gained experience.
- Changes in legislation:
- Initiating adoption of legal acts regarding the improvement of social protection and medical care.
- Establishing partnership relations (on local, regional and international levels).
The Informational Consultative Center tasks:
- Medical follow-up of children with BD and congenital pathology by supervision from the newborn period, carried out by medical geneticists and a trained developmental pediatrician with the aim of early diagnosis and prevention of possible complications (delays in mental and physical development).
- Psychological support of families, in which BD were diagnosed prenatally or postnatally.
- Legal consultations of families with special needs children.
- Helping families in searching for information on treatment, care, rehabilitation of children with special needs, facilitating the creation of parental support groups.
- Social follow-up of families.
Innovation of the service:
- Absence of analogues combining medical-genetic counseling, informational support, distant consulting using internet-based technologies.
- Multidisciplinary approach and continuity of the above-mentioned services on the basis of the center, which will provide the improvement of social adaptation and integration into community of people with special needs.
- Positioning a family as the main subject for receiving services.
- This project represents an element of early intervention (development follow-up), which prevents possible complications and developmental impairments.
Pic. 2. The multidisciplinary approach
Pic. 3. The multidisciplinary team
The most valuable present day achievement of the center we consider to be the well-coordinated work of the team specialists (medical geneticists, social worker, psychologist, information specialist) together with parental support groups, which enabled creation a lekotek and holding an experience exchange conference "Current Aspects of Early Intervention Regarding Children with Special Needs" with participation of practical early intervention specialists from Khmelnytsky, Kharkiv, Rivne and Volyn oblasts.
Date of report: April 2, 2007