Investigating service user ethical priorities in psychological research

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Investigating service user ethical priorities in
psychological research

• Rachael Carrick

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What makes service users feel they have been
treated properly when researchers are looking at
how people tick?

• L-T Merwood

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• RECs are responsible for acting primarily in the
  interest of potential research participants and
  concerned communities
• Central Office for Research Ethics Committees,
  2001, p. 6

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• Official committees decide whether or not
  particular research projects can go ahead.
• The most important thing they must take into
  account is the good of people who take part and
  the good of people the research could affect.

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Explaining terms What words mean

• Service User
• Ethical priorities
• Psychological Research

• Service User
• Being treated properly
• Finding out how people tick

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Images from COREC
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What has been done before
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Methodology

• Consultation
• Nominal Group / Expert focus group
• Online (or post) Delphi questionnaire, 17 items,
  rated 1-7 importance comments
• Round two Delphi
• average (median)
• agreement levels (high, medium, low)

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How it worked

• Starter group
• First questionnaire
• Second questionnaire

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Participants

• Consultation
• 3 service users knowledgeable about research
• Nominal Group / Expert focus group
• 6 service users, mixed but most mental health
• Delphi
• 92 service users, 71 female, 81 mental health
• 58 service users, 72 female, 84 mental health

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Results

• 17 statements
• 9 reached consensus criteria
• 4 didnt quite
• 4 had substantial disagreement
• Example statements from each area
• Comments
• Median and agreement levels

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Results

• People mostly agreed about half the things on the
  questionnaire. They thought they were all very
  important.
• On other things people had more different ideas
  about what was important.
• The most interesting things were
• Things people disagreed about the most
• The reasons people gave for their views

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People agreed that

• Service users should help decide whether research
  projects are reasonable, respectful and fair
• Researchers should be up front with people about
  what they are doing
• Research should be well planned so all kinds of
  people can take part if they want
• If research upsets or unsettles people they
  should be helped to get over it

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People disagreed about

• Being paid!
• Whether researchers can ask upsetting questions
• How involved services users should be in choosing
  what research is done

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Where there was agreement

• Of the 9 statements reaching consensus all rated
  Very Important
• e.g RECs should have people on them to represent
  service user views
• Median 7 Range 5-7 IQR 0.00
• Themes
• SUs provide a different and much needed
  perspective
• If RECs are making decisions regarding SUs, SUs
  should be on them

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Where there was some disagreement

• Those statement that did not reach consensus (4)
• There should be a good chance that research can
  make a positive difference to peoples lives
• Median 6.5 Range 1-7 IQR 2.0
• see quote...

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Example comment
Although I think a major aim of research should
be to identify knowledge that benefits peoples
lives, to suggest all research should do this
would be to deny some research might not show
that e.g. some therapies dont work but more
importantly box in researchers to do only what
appears useful and prevent researchers
proving/disproving care that might not yet be
obvious but will be in the future. Researchers
should be creative as well as practical. Katie
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Where there was more disagreement

• 4 Statements including
• Research should avoid asking questions that could
  upset participants
• Median 3.0 Range 1-7 IQR 3.0
• See quotes

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Example comments
An upsetting question that is asked may cause
discomfort for five minutes, an upsetting
question that is not asked may cause discomfort
for a lifetime - how can we be educated about
what upsets people if we dont ask and consult
them? Lucy People have the right to choose to do
something that could be upsetting Emily
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Broad themes across the items

• Choice
• Balancing empowerment and protection
• The similarities and differences between research
  and therapy
• The importance of relationship
• Participants motivations
• Service User understandings of the concept of
  science
• Tension between objectivity and relevance

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Example comment
There seemed from my own experience to be a
conflict between the scientific requirements of
the trial, i.e. that all treatment plans in the
trial should be comparable, and the importance of
a treatment plan being tailor-made for an
individual, e.g. I needed to talk at some length
about the history of my condition in order to be
able to build up trust with my practitioner. This
was not possible within the constraints of the
trial and was one reason why I decided to stop
treatment within the trial and continue it
outside. Chloe
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Implications What next?

• Representativeness of the sample
• Timing of the research openness to SU input
• Dissemination

• Asking the right people
• Being realistic about what you can get done
• Letting people know what you found out

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Why Delphi?

• What is Delphi?
• Flexible
• Consensus methodology appropriate in the area of
  ethics
• Allows collection of quantitative and qualitative
  information
• Allows the views of a large group to be analysed
  without losing opportunity for individual comment