Evaluation of disease narratives of children with chronic uveitis and their families

This study has been carried out in order to make the narratives of children aged 8-18 with chronic uveitis and their families visible, and to evaluate the problems experienced in this area and the services that need to be provided. The method of this research consists of three different components as fictional and methodological. In the first two components, the narratives of children and their families were constructed with qualitative design and narrative analysis. In the third component, the opinions of the participating health professionals were assessed with thematic analysis. The study group consists of 13 children between the ages of 8-18 with chronic uveitis, 20 family members and 13 health professionals. In the research, data were collected by conducting in-depth interviews with all three participant groups using semi-structured interview forms. Findings revealed that children fell behind in their education due to their illness and their quality of life decreased and their social life was restricted. In families, on the other hand, while the anxiety of losing their children's eyesight is intense, problems such as psycho-social, economic, accommodation, care, isolation from social life, limited environmental-social support, and negative effects of family relations come to the fore as well. Especially psycho-social, economic and low vision problems negatively affect the well-being of children and families. In the self-report of families, instead of directly questioning the illness and life, the fictions of asylum came to the fore as a coping strategy. In the interviews with health professionals, the problems experienced by children and their families and suggestions regarding them were presented. In the light of these findings, the establishment of an information and guidance unit in the hospital was emphasized together with the construction of accommodation and resting places and playgrounds; providing psycho-social and economic support to families; providing education about uveitis for health professionals, teachers and the community as well as the importance of providing child and family-centered services by expanding Medical Social Service Units in hospitals