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 NJ8 Feb 2013

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%

Aim

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

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

Results

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

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

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participant• Poorly• Tired• Frail /older• Confused • Memory impaired• Angry/ emotional• Grumpy• Un co-operative• Withdrawn• May be offended

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

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

Patients act autonomouslyI’ve known where a patient’s said, ‘No thank-you.’ P09

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

… 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

They see it altruistically… ‘Okay, well, it’s not for me, but somebody else is gonna benefit.’ P04

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

Pay backThey’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

Pay back

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

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

Thank you&

Questions