Assessment of medical needs of families with children with cerebral palsy in Kazakhstan

Tuesday, 19 August 2014
Exhibit hall (Dena'ina Center)
Ainur Yelissinova, PhD , Semey State Medical University, Semey, Kazakhstan
Tolebay Rakhypbekov, PhD , Semey State Medical University, Semey, Kazakhstan
Yulia Semenova , Semey State Medical University, Semey, Kazakhstan
Nurgul Yelissinova, PhD , Semey State Medical University, Semey, Kazakhstan
Imdat Efendiev, MD , Semey State Medical University, Semey, Kazakhstan
Anargul Mansurova, MD , Semey State Medical University, Semey, Kazakhstan
Bakytkul Toktabayeva, MD , Semey State Medical University, Semey, Kazakhstan
Raushan Igembayeva, MD , Semey State Medical University, Semey, Kazakhstan
Andrej M Grjibovski, PhD , Northern State Medical University, Arkhangelsk, Russia
INTRODUCTION:  There are 62,081 disabled children in Kazakhstan or 1.2 % of the pediatric population. In countries with limited social support families with disabled children face multiple problems. However, the evidence on medical needs of these families from Central Asian countries of the former USSR is scarce. The aim of this study was to assess medical needs of Kazakhstani families with children with cerebral palsy.

METHODS:  A cross-sectional study. Parents of all 175 children with cerebral palsy residing in a city of Semey, East Kazakhstan filled out an anonymous questionnaire. The age range of children was 2-18 years, (57.7% were boys). Data are presented as proportions with 95% confidence intervals (CI).

RESULTS:  Altogether 48.0% of parents (95%CI: 40.4-55.7) consider themselves as well-informed about the cause of their child's disability, 21.1% (95%CI: 15.3-27.9) are unaware of their child’s condition and 30.9% (95%CI: 24.1-38.3) believe that their knowledge is insufficient. Doctoral prescriptions are strictly followed by 71.7% (95%CI: 64.3-78.3) of parents, followed partially by 27.7% (95%CI: 21.2-35.1), while 0.6% (95%CI: 0.0 % -3.2) do not follow prescriptions at all. The reason for incompliance with prescriptions were financial in 40.8% (95%CI: 27.0-55.8), psychological (disbelief in positive outcomes): 20.4% (95%CI: 10.2-34.3), shortage of pharmacy supply: 16.3% (95%CI: 7.3-29.7); 14.3% (95%CI: 5.9-27.2) of parents do not trust physicians and 8.2% (95%CI: 2.3-19.6) reported the lack of time. The needs assessment in special aids showed that 33.1% (95%CI: 26.2-40.6) of children have all devices they need, 22.9 % (95%CI: 16.9-29.8) do not have aids they need, and 2.9% (95%CI: 0.9-6.5) of parents are unaware of equipment their child needs.

CONCLUSIONS:  Many families with disabled children in East Kazakhstan experience shortage in essential knowledge and treatment/equipment their child needs. It is important to provide health education to parents about their child’s condition and how to meet the child’s medical needs.

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