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Kvalita života rodin s dětmi s poruchou autistického spektra a dětskou mozkovou obrnou
BALOUN, Ingrid
Aim: The first two aims are focused on "pasportizeace" of social services for families with children with Autism Spectrum Disorders and children with cerebral palsy in the South-Bohemian region. The content of third and forth aim is finding out the life quality of families with chidren with Autism Spectrum Disorders and families with children with children cerebral palsy. The fifth and sixth aim is to find out the accessibility of social services for families with children with Autism Spectrum Disorders and for families with children with children cerebral palsy. The seventh and last aim is to create a plan for improving life quality for families and their children (families with children with Autism Spectrum Disorders and with children with children with cerebral palsy). Way of reaching the aim: The combined research was chosen which is combination of quantitative and quliatative research strategy. The quantitative part of the research is realized by support of two types of questionnairies. First questionnaire is so called basic questionnairie which is to find out basic data information about family and child. The other questionnaires were focused on measuring life quality. The life quality measuring was done by support of questionnaires PedsQL?. There were three modules of this questionnaire used: PedsQL? 4.0 Generic Core Scales, PedsQL? 2.0 Family Impact module and PedsQL? 3.0 Cerebral Palsy Module. The set was created by total of 115 families, from that 34 families with children with Autism Spectrum Disorders, 42 families with children with children cerebral palsy and 39 families with healthy children (as a control group). There was used half-structured interview in the quality part with the same parents with children with Autism Spectrum Disorders and parents with childre with children cerebral palsy. Objectives 1 and 2: From the passporting of services is clear that there is a lack of social services that could be used by families with children with autism spectrum disorder. In addition, existing social services have full capacities. Objectives 3 and 4: In the quantitative part of the research, the evaluation of the PedsQL? 2.0 Family Impact Module, 4.0 generic Core Scales and 3.0 Cerebral Palsy module questionnaires revealed that the opinions of children and parents are generally the same, only in some areas parents are more critical. The results also showed that the quality of life according to PedsQLTM 4.0 generic module in children with cerebral palsy is significantly lower than the quality of life of children from the control sample of the intact population, both according to the evaluation of them and their parents. Furthermore, it was found that the quality of life of families of children with cerebral palsy is also significantly lower according to PedsQLTM 2.0 than in families of healthy children, while they do not differ in the time horizon. From the point of view of PedsQL? 3.0 cerebral palsy, it can be noted that the biggest problem for children with cerebral palsy is in the area of daily activities. Objectives 5 and 6: Families have to wait a long time for vacancies in social services. There is a lack of services in the South Bohemian Region that could be used by families with children with autism spectrum disorder. These families lack all services from early care to residential services. Families of children with cerebral palsy mainly lack residential services, such as weekly hospitals. Objective 7: The researcher proposes the establishment of centers that would use coordinated rehabilitation. However, the basis is the enactment of coordinated rehabilitation in the CzechRepublic. Furthermore, psychological support is important, which should start after the birth of a child with a disability, or immediately after the discovery of a disability.
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