Investigation of the thoughts of parents with special needs on genetic testing in terms of various variables

In this research, it is aimed to examine the areas where parents with special needs children are affected by having a special needs child, the information they receive and want to receive supports, and their thoughts about genetic testing. 717 parents with children diagnosed with cerebral palsy, SMA, down syndrome and autism spectrum disorder aged 18 and under participated in the study. Using purposeful sampling in the research, associations with families with special needs children were contacted throughout Turkey in 2021-2022, as well as parents who volunteered to participate in the study from families with children attending special education and rehabilitation centers were sampled. The data were collected by online surveys in electronic environment by face-to-face or by telephone interview with the questionnaire developed by the researcher. The questions included in the survey were evaluated item by item with the statistical package program. According to the data obtained from the study, 75.8% of parents with a child with SMA were economically affected. 70.3% of the parents were affected psychologically and 64.9% wanted psychological support to be provided to them. 55.5% of parents stated that they could not spare time for themselves due to the special situation of their child, 81.9% wanted to attend seminars. 77.1% of parents stated that early detection together with genetic testing will increase the possibilities of planning for good interventions, 26.4% said that genetic tests should be performed before having children to all couples who are considering having children, 47.1%. From the diagnosis of a child with special needs, parents receive psychological support, creating a system where parents can safely take care of their children on certain days of the week or month, such as vacation homes, providing parents with more support for medical devices and treatments, creating a family counseling system that includes family education, family involvement and psychological support, organizing medical education programs, especially for parents of children using medical devices, spreading genetic tests and conducting free, it is recommended that parents be given more support in terms of genetic counseling and treatment methods.