NON-STOP Study 1 – Qualitative interview study with key stakeholders
As part of the NON-STOP project, the first research study asked questions to those most involved in the care of children with Perthes’ Disease. These were children with Perthes’ Disease, because who knows better than the person living with the condition?! The families of the children with Perthes’ Disease, because it’s important to understand the people who are responsible for caring for the children with the condition all day every day. And finally, the clinicians providing clinical care for children with Perthes’ Disease, because these are the people who have been providing clinical advice for the children and their families for decades.
In this study, questions were asked about the care currently provided to children with Perthes’ Disease. Questions were asked about what has worked well, what hasn’t worked so well and also, what could we do differently to help improve care for these children. We also talked to the experts about whether they’d be open to using an app to help children manage their Perthes’ Disease. Getting input from these important people means that any changes that we might make to care in the future will be based on thoughts of the real experts.
The results of this study included 5 main themes:
- Care for Perthes’ Disease is different in lots of places and people want more evidence on how best to look after children with Perthes’ Disease.
- We need to have good reason for doing what we do and this needs to focus on what’s important for the child with Perthes’ Disease and the family.
- An app would something children with Perthes’ Disease would be willing to try
- An app should include educational information about Perthes’ Disease but also fun and interactive activities for children.
- Any app should be something that would be used in a range of settings such as home, school and hospital
For further information about the research study, please see a fun poster.