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Table 1 Themes and subthemes with illustrative quotes

From: Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of clinical gatekeepers in an observational cohort study

Theme Sub-themes Example Quotes
Value of research Staff are interested in and committed to research • “it’s one of the things that really attracts me to the [location] team is because of the research links … for me as somebody who is not in a …research position and I’m not involved in the research projects, it’s really exciting for me to be involved-to have that link” (P1)
• “it’s very positive because we’re making change to help the whole population” (P4)
• “Every patient who comes through the door should have equal opportunity to be part of it I believe and whatever research is going on if the meet the criteria they should be given that option and it’s my role to um signpost them, signpost the information so they have the chance to be part of that.” (P4)
• “it’s a really important role in-in-in the team as a whole and I think that, um, my job is to make sure that if there is anybody eligible that I recognise that and I offer them the opportunity to take part” (P6)
Importance of research in developing the evidence-base • “…I feel that gives me an added confidence with-with patients because I-I know that y’know what I’m saying is evidence-based.” (P1)
• “… it’s so interesting really to be learning more about um people’s experiences and using that to show what we do so you know…for example, in an initial assessment when you’re talking with a young person and their family and telling them about the evidence base and the treatment you can really do so with real confidence. I mean any…clinician can generally but we can say look hey this is a study we did last year, this is what we found. I mean that’s just fantastic like live, real time use of research” (P3)
• “Research is always valuable because we have to provide an evidence based service …and we also have to answer unanswered questions” (P5)
Research is not seen as part of the primary role/focus of clinical staff • “I am very pressured as a clinician, trying to hold it all in mind with things that [research] is not the emphasis of my assessment, it will not – never be-…because I’m here for clinical end of things” (P2)
• “But um, yeah when, people -you know sort of if they’re crying...I think then you can’t really prioritise research over what’s happening” (P6)
Barriers to recruitment Clinical context of recruitment Time Pressure • it can be difficult to um er because you run out of time in initial assessment to then um prioritise enough time to talk to people about the study (P1)
• “gets pushed out from running out of time” (P3)
• “I’ve got limited time to get all the information out.” (P4)
  Complex/emotional/demanding initial assessments • “…how the assessment has gone and in terms of complexity and emotional load for the family” (P3)
• “if the patient is struggling to take on information about their diagnosis let alone an additional bit of work around research. So if their mood is perhaps lower or their motivation is lower um it would be more challenging to recruit a patient like that than a sort of very proactive family that are bouncing around wanting to help and do things” (P4)
• “you’ve got to be wary of your focus on the patient in the consultation it’s their consultation versus the demands of research which is helping the wider patient community come up with answers in the future and that’s a delicate balance you have to make and you have to judge whether it’s appropriate the moment to ask them about research or not depending on their levels of distress.” (P5)
• “So I’m always obviously trying to think of putting myself in their shoes and thinking it’s like oh what’s – what’s – what’s good for them?” (P2)
• I think one of the groups I’ve struggled with is when they’re really obviously struggling with their own mental health …then somehow it just seems like a difficult question to add on at the, I know that’s a bias (P6).
Wider research context Research fatigue in the context of too many research projects • “there is a danger of getting research overload so I think it suffered a bit because it came on the back of all the other trials we’d done and we’d just finished recruiting and people heaved a sigh of relief and said can we have a little window off recruiting please” (P5)
• “…there were around four or five research projects, seem to be, seemingly on the go at any one time…and that is confusing.” (P2)
• “… having one recruiting drive at the time. So, it’s like, you know, singularly
• attack, we focus on this one this period of time and there’s a sort of a cut off for it” (P2)
• the more studies that there are in-in the pack that you have to offer, the more- the more difficult it is to-to sort of push forward (P6)
Study design and focus Name of the study • “…because it’s got depression in the title and um I think um you it just seems a little bit more explanation um by inviting them to take part I’m not suggesting that they are depressed…” (P1)
• “I prefer not to call it a depression diagnosis study explicitly when I’m talking about it with families but that wouldn’t be the first thing I would say I would introduce it to you know a study that’s looking into young people’s experiences of you know moods and emotions and I would want to sort of say something a little bit broader um but that’s more perhaps a personal approach.” (P3)
• “…sometimes you won’t even think of it if you’ve got a patient who clearly isn’t depressed at all is coping extremely well it doesn’t even cross your mind to enter them into something called the depression study so I think the name of the study is wrong it should be called you know mood in chronic fatigue or something to help people think it’s for everyone, we’re just as interested in people who don’t have depression as people who do. So the name was wrong” (P5)
The focus of the study
- Patient perceptions of a mental health study
• “…can meet some resistance sometimes and one of-I had one mum who said I think her child was um her daughter was thirteen and she didn’t want her to take part because she didn’t want her-she felt she was too young and that being asked questions about her mood would kind of put ideas into her head, that was what she felt.” (P1)
• “because it is more objectively more obviously about the mental health side of things I have found it to be a different experience recruiting to this” (P3)
• “…when I have younger patients the opening sheet which you show them that says we’re going to talk about sex and smoking or drinking whatever some parents balk at and they think oh that’s too intrusive I don’t want to do that study.” (P5)
- Healthcare professionals’ concerns about it being a mental health study • “I’m here for your physical health; you know obviously please do tell me about any…mental health um concerns, … but ultimately …the sessions with me aren’t…mental health sessions…I’ve been in physical health since I qualified … so I don’t feel as though I am up-to-date you know mental health” (P1)
• “if a young person is then having a research interview with the researcher and something comes up along the lines of risk that you know that then needs to be managed there’s always things in place that when you add research to the package to the interactions with the service it opens up other bits that need managing or organising or accounting for.” (P3)
It being an observational study • “I think the difference of priority is – is that, um with MAGENTA you’re recruiting into a treatment trial--an intervention. With the depression study you’re recruiting into a semi-structured interview, the outcome of which may or may not benefit the--young person.” (P2)
• “…it doesn’t lead to additional help or additional resource or anything, it is simply, um a snapshot of the people coming through which is very valuable …but look what’s – what’s the benefit for the client?” (P2)
What helps to support recruitment Study familiarisation • “I think if it-if it feels like something distant…that can make it more difficult I think for me to speak with kind of conviction…” (P1)
• “…it’s about understanding why the research is useful, but I need to understand the content, otherwise I-I wouldn’t feel confident in consenting actually” (P2)
Tools to support recruitment • “I really, really find it helpful that all the research packs are done so you know the information sheets are printed and often massive time saver that they are kind of bundled together and ready for a clinician to give.” (P3)
• “having the recruitment form in the notes when you see a patient so it’s there already and you don’t have to remember to carry it with you” (P6)
Use of Reminders • “email updates of where recruitment lies or how it’s growing and essentially reminders, keep this study on your radar we’re still recruiting that’s been hugely helpful. Hugely, hugely helpful.” (P3)
• “reminders…that was probably helpful just to keep it in mind” (P2)
• “[emails are] kinda good but it doesn’t jump to the top of my inbox, it doesn’t get flagged” (P2)
• “having the updates in the um team meetings is useful too…in fact that’s probably the key- the heart of it really” (P6)
• “..the checking afterwards from the research team so for example if I’ve seen somebody and not recruited them and I haven’t um given the information yet as why they were not recruited then that email coming that says oh can you just let me know what the reason was and then I can make sure that I’ve done that so that data doesn’t get lost in the ether” (P3)
• “I get the email saying you’ve got this patient coming up could you consider them for the study. Those sorts of things are just so helpful because there’s so many balls to juggle and it’s just that sort of prompt” (P4)
Being able to recruit at multiple points, not just initial assessment • “…multiple points of recruitment so sometimes I think someone might in time want to enter the study but it’s not appropriate in the initial consultation so being able to contact them at a later date I think would be equally valid and important actually.” (P5)
• “being able to defer it to the second appointment” (P6)
Value of case specific information (outcome of the study) • “… if I was seeing follow ups and I was seeing the results of the mood interviews and digested them before the follow up that would be really helpful. So when it goes into great detail and looks at different levels of anxiety and harm and obsessive behaviour and things like that I think that’s really useful for the future.” (P5)
• “[substance abuse disclosures] comes as a bit of a surprise from some of the interviews…that would be my learning point from what we’ve been doing so far”(P6)
  1. P1, P2, etc. denote nominal participant identification numbers