Are palliative care research samples biased? The views of staff in a research active hospice

1. Are palliative care research samples biased? The views of staff in a research active hospice Hennings J, Salt S, Griggs A, Payne S, Rigby J, Parr A, Dunleavy L, Preston NJ 8 Feb 2013

2. Background • Cancer Patient Experience Survey 2011/12 • 71,793 people surveyed • Since diagnosis, has anyone discussed with you whether you would like to take part in cancer research? • Yes 33% No 67% • If yes were you glad to be asked? • Yes 95% No 5% • If no would you have liked to be asked? • Yes 53% No 47%

3. Aim • To understand issues of patient recruitment to research studies in hospice settings from clinicians’ and researchers’ perspectives

4. Method • Researchers & clinicians recruited from palliative care settings in North West England (n=12) • Individual interviews • Guided questions • Interviews recorded, transcribed and content analysis performed

5. Results Sample: Clinicians (n=7) Research practitioners (n=3) Professionals with dual research/clinical roles (n=2)

6. Role of palliative care clinician • Protecting the vulnerable • Doing the best for their patients • Providing emotional support and ‘lifting mood’ • Optimising symptom control • Evidence based practice

7. Ideal research participant • Young • Co-operative • Chatty Unsuitable research participant • Poorly • Tired • Frail /older • Confused • Memory impaired • Angry/ emotional • Grumpy • Un co-operative • Withdrawn • May be offended

8. Do we know views of patients? If we maybe asked the question, we might be totally wrong and they might say, ‘Yeah, we’d like to participate.’ P 06

9. Gatekeeping by relatives She sort of backed me into a corner and said, ‘What do you want to talk to her about?’ So I just said, ‘Well,’ you know, ‘I’m working on a research study…’ and she said, ‘No, absolutely not, no. Leave her alone.’ So I just walked away. ‘Well, why haven’t you asked me?’ And I said, ‘Well, I did ask your partner but she felt it would be… you know, it would really upset you.’ And she just said, ‘I thought I knew you better’ you know, ‘You should have asked me.’ So, you know, ‘Why didn’t you ask me?’ And I said, ‘Well, you know, I really… she felt really strongly about it and if you do it and you’re going to upset your partner and it’s going to make a difficult relationship,’ and she just said, ‘No, we’ll do it. She won’t know.’ P13

10. Patients act autonomously I’ve known where a patient’s said, ‘No thank-you.’P09 … I can think of two or three very frail and quite elderly people who I thought would say no, they didn’t want to do it, but actually, erm, they were very willing. P03 You might find someone who’ll say one day, ‘No, I don’t want to do it,’ but then Mary next door may be having it done and then they might say, ‘Oh, what’s she doing? …’ and you say, ‘Well, you were asked.’ ‘Ooh, no, no, I’ll do it.’ So I think, you know, I think it depends on the… day, the time. P08 They see it altruistically… ‘Okay, well, it’s not for me, but somebody else is gonna benefit.’P04

11. Why do patients take part? • to help others • to help for the future • to feel like they’re doing some good • doing something positive • keen to help • leaving something behind

12. Pay back Pay back • They’d want to say yes to please you because… you’ve looked after them and supported them… so you have to be very careful really. …’I will say yes because I’m being very well looked after here… and it’s a nice place and the nurses are lovely’ P09

13. Experience leads to change • ...they were saying, ‘How can you go and approach this really poorly person who’s, ..clearly very fatigued, if they want to do this?’ And actually I think it was a really good thing for us to do because the nurses suddenly discovered that some of the people they assumed, and were worried about ..asking, wanted to do it. … I suppose the study was relatively straight-forward because it didn’t involve too many questions for the patient. I can see that there would be a problem if we put too much burden on a very frail patient. P03

14. Key findings • Asking only ‘ideal’ patients leads to biased sample • Recognition that patients want to be asked and are able to decide • Involvement in research can be positive • Experience leads to improved recruitment • Researchers need to support clinicians

15. Thank you& Questions