Föräldrars upplevelser av delaktighet och tillgänglighet inom barnsjukvården : – En intervjustudie

Sammanfattning: Background: The study is based on answers from the National Patient Survey from spring 2016. There were questions about participation and accessibility. A region in southern Sweden had difficulties to understand the answers to these questions. Was the questions misunderstood or was their experience of participation and accessibility bad? Aim: To describe how parents of children with chronic bowel disease experienced participation and accessibility to health care. Design: The study has a qualitative approach. Method: Semistructured interviews were conducted with parents who have a child with chronic intestinal disease. The interviews were analyzed on the basis of a qualitative content analysis. Results: The material from the interviews was divided into participation and accessibility. Parents perceived that participation in child care was important. It gave the parents a sense of security, trust and control. When the participation burst, it gave parents botheration as they did not experience being seen or believed. It was also worrying to lack knowledge. The parents experienced a good accessibility when they received sincere information, continuity and support of care. Inadequate availability is symbolized by insufficient contact with care, sufficient information or access to a network with other parents in similar situations. Conclusion: It's important to keep listening to parents to make them feel participant. In order for parents to experience good accessibility, it´s important to give them information, let them meet like-minded and gain access to cross-professional contacts. Appropriate personnel should be informed of the results regarding participation and availability so improvement measures can be implemented.