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Table 5 Summary of interviewees feedback about ‘Regional CODE’ – levers and barriers for participation

From: Quality assurance for care of the dying: engaging with clinical services to facilitate a regional cross-sectional survey of bereaved relatives’ views

Levers for participation Description Illustrative quotes
Lack of existing feedback processes Interviewees reported that their main reason for participation was due to a lack of existing ‘formal’ mechanisms in their own organisation for systematically gaining the views of bereaved relatives. ‘At the moment we don’t (referring to formal feedback processes) …and obviously that’s another thing we’ve been looking at and our family support worker is currently looking at that.’ (P008 – Outreach Services Manager)
‘it’s not a formal thing, it’s just, like you say, an ad hoc thing’ (P004 – Clinical Nurse Specialist)
‘(having the) opportunity to gain some feedback around our organisation really and to compare it…it (is) quite useful to have an understanding of where we sit with our peers’ (P008 – Outreach Services Manager)
Clear operational processes Interviewees fed back that the ease of participation -in terms of clear guidance and instructions to enable processes of data collection and entry - encouraged participation. ‘the web tool itself was quite explicit. As I say, once we read it (the guidance) and got to understand the format of it, it seemed to run very smoothly and it was very useful and it gave us quite explicit ways of doing things....’ (P008 – Outreach Services Manager)
‘I don’t think it could [be improved] - like I say, it was one of the better ones I’ve used, it was really easy to use’ (P004 – Clinical Nurse Specialist)
‘it’s good to have good access to assistance, you know if I ring you or email you, you reply, and to know that makes it possible to do it...otherwise I wouldn’t have completed it’ (P002 – Consultant in Palliative Medicine)
Significant user-feedback and opportunity to use results in meaningful way Interviewees perceived that data generated would provide valuable local information to better understand experiences of care in the last days of life and provide a direction on which to base the improvement of future services and care delivery. ‘we will…..create reports that go to the senior management team and it’ll go to the trustees, so that we’re looking at… what are we’re doing well at and….things we can improve on and what (we are) going to do.’ (P001 – Clinical Services Manager)
‘I think this is extremely good leverage to make people sit up and understand the changes that are required really and provide evidence for regulators but (also) our patients’ (P009 – Consultant in Palliative Medicine)
‘It will be taken to our governance group and then it will be fed out more widely to the rest of the teams.’ (P008 – Outreach Services Manager)
Barriers for participation Description Illustrative quotes
Fear of causing distress to bereaved relatives The main concern reported by interviewees related to the potential distress to bereaved relatives when asking them to participate in the survey. ‘Yeah I mean obviously you also have worries of barriers that you kind of fear of being maybe a bit intrusive and I think sometimes you worry that you rekindle maybe thoughts and feelings in bereaved relatives after a period of time and I think those are kind of our personal worries as members of staff I think’ (P008 – Outreach Services Manager)
‘No...complaints came back...no letters...no telephones...there was nothing...we didn’t seem to have any that, you know...maybe people had opened and thought “Oh, I don’t know” - they all came within a short space of time. It was actually really quite good to see that people received it, thought about it, wanted to do it, and sent them back. And I thought that the number that we got returned was actually a high rate of return’ (P001 – Clinical Services Manager)
Organisational systems not set up to capture information Some interviewees reported that they were hindered by their organisational information technology systems and processes, e.g. multiple systems; information not being routinely available; accuracy of information not assured requiring additional work to confirm details. ‘I addressed all the envelopes myself just so I knew that it had gone to the right people and that I couldn’t blame anybody else if it went wrong’ (P004 – Clinical Nurse Specialist)
Lack of organisational ‘buy in’ Some interviewees reported strong ‘buy in’ from senior and executive management ensured the project was seen as a priority. Participation was potentially compromised if lacking in senior support. (successful participation in Quality Assurance Project relied on)’...the good will of staff who are involved...because it’s not actually part of anyone’s particular role if you know what I mean...I think that it is because of our [non managerial staff] drive to try and ascertain the views of the families, but that hasn’t come from the board it’s come from within our levels to say how can we evidence what we do’ (P005 – Clinical Nurse Specialist)
‘Once I had engagement of the deputy medical director, I knew it [project participation] would happen’ (P009 – Consultant in Palliative Medicine)
Lack of administrative support Interviewees who cited having a small ‘team’ designated to support the project described a more positive experience, and without administrative support participation would have been compromised. ‘I was over-worrying about the time it would all take and the inputting onto the system, more so for the admin staff...they were really, really good and they accepted that I was explaining that this was important to us to be involved’ (P001 – Clinical Services Manager)
‘If I had to do it again...it wouldn’t just be me. I would be much more autonomous about this is...I need other people, you know, I need to bring other people with me so it can’t just be in isolation’ (P003 – Senior Manager)