Browsing by Author "Sahimaa, Mirjami"

The focus of the research in this Master´s thesis was in the personal views of the parents of the children with ASD about family-centered work in school, early childhood education and health care: how they are treated, how well they feel they are supported and what kind of wishes they have for meetings with professionals. The aim is to improve the competence of school and health care professionals and to improve their ability to work with parents of children with ASD. The parents of children with ASD cooperate closely together with different professionals and a successful cooperation has a positive effect on the parents' coping and daily survival. However, parents often face various challenges when collaborating with professionals in health care and in school. The data of this research consists of 28 responses from parents of children with ASD. A web questionnaire was used to collect the data and it was analyzed qualitatively with theory-guided approach. In the questionnaire parents were asked to share their experiences about how they have been met and taken into account in the meetings with the professionals in school, early childhood education and health care. The results showed that there were lots of variation between individual experiences on how the family-centered work has manifested and realized. Most of the experiences of the parents were quite negative while the positive experiences had a positive impact on the collaboration. Parents felt quite often that the responsibility was distributed unevenly and the load for the parents was too heavy. Collaboration was also hindered by the stiffness of the system, continuous replacement of the professionals and the underestimation of the parents experience. Also the lack of know-how and uncertainty of the professionals taking care of the childrens’ matters was frustrating for the parents. Parents also told that the families were supported in a more holistic way, that they were heard and care were individualized. The amount of help and support was felt insufficient and the parents also felt that they were blamed and they were given negative feedback. They also felt that they were informed quite poorly and they wished for more concrete advice and help for the search of the information. Family-centered work is a good basis for the collaboration. It is built of multiple little things, but one of the main things is that the professionals keep the whole family in the focus. Professionals with a sufficient know-how are able to take the responsibility needed so that the load for the families isn’t too heavy. That is also one key thing to build trust between the professionals and the parents. And for that reason it is important to always upgrade the knowledge and to ask help if needed. Also the ability to listen the needs of the families and to offer help and support spontaneously is important. It is always important to take care of the child, but also the whole family and make sure the parents are well. Even though there are always lack of time and resources for the professionals to deal with, it is important to understand that just by being present, listening and meeting the families with respect, it is possible to create a positive atmosphere for the meetings and enhance the family-centered work to be realized. Positive feedback, informing the families and investing in the first meetings with the new families will make it and will help the family-centered work to be realized.