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Table 8 Participants’ Beliefs regarding Psychosocial research

From: What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

Priority Example quotes
Peer support F- I think when you are first diagnosed; it should be maybe someone over 15 or over 18. I think there should be someone who comes and explains it to you. Because you’ll listen to someone who’s roundabout your age. But having someone who’s actually been through it and not whose just helped patients. (England 11–15)
Support for parents and siblings F- So I don’t know if it would be like classed as the research but I think the funding needs to be not just for the kids but for the entire family to talk to someone because it’s not exactly a nice thing to go through. (England 11–15)
Transition from paediatric to adult care F –Just because of the position I’m in as well, because I’ve got to the stage where I’m going to have to probably move on to adult services. I am terrified of that transition. There’s nothing put in place to kind of the ease that whole transition. (Northern Ireland 16–24)
Assessment of psychosocial aspects of their rheumatic condition F: When I go you have to say how you were in the past week, but I might have been completely fine in that past week but maybe before I was in a lot of pain, but you can’t note that down so they can’t completely understand what it’s been like. (England 11–15)
  1. F Female, M Male; Country focus group undertaken in; age group