Interviewing for Consent - Ensuring Understanding and Inclusion

1. Good Question interviewing for consent What, why, and how? (c) conboyhillscottgliba 2013

2. Why interview for consent? • Research increasingly needs participants with lived experience of a clinical problem. • The literature publicising recruitment is likely to exclude many of the most vulnerable due to literacy or attentional problems but certainly not all. • Most likely, you won't know who those vulnerable people are. • Sometimes it’s that most vulnerable population you need for your study and many of them will be able to consent if you get it right. • The starting point is your information leaflet and your consent form – make these clear and try not to bundle agreement clauses: • I confirm that I have read and understood the participation information sheet for the above study and that I have had the opportunity to ask questions and have received satisfactory answers to these. (c) conboyhillscottgliba

3. What is Good Question? Good Question is based on the cognitive interview, which is a psychologically derived tool for getting ‘best evidence’ from vulnerable witnesses. Milne, R. and Bull, R. (1999) ‘Investigative Interviewing’. John Wiley and Sons Ltd. It is modified to elicit recall of information and understanding of information essential to capacity to consent. Vulnerable Adults: Assessing Capacity to Consent. In: Clinical Psychology Forum 158: 19-23 Feb 2006 • So it’s Socratic questioning? Not really. • This was intended to challenge ideas and expose flaws in logic and principle. ‘(Socrates)was known for confusing, stinging and stunning his conversation partners into the unpleasant experience of realizing their own ignorance, a state sometimes superseded by genuine intellectual curiosity.’ Stanford Encyclopaedia of Philosophy, 2009. http://plato.stanford.edu/entries/socrates (c) conboyhillscottgliba

4. If not Socratic, then what? Where….? What…..? When…..? Why…..? How….? Tell me about…. You said that…….what was that about/how does that work? Aim for enquiry, not interrogation. The Lieutenant Columbo effect. (c) conboyhillscottgliba

5. Open and Closed Questions • Closed questions can lead to acquiescence • Open questions encourage free report and increase the amount of information reported • Open questions reduce the rate of questioning and the number of questions asked and still bring out more information. • Up to 63% (23% for people with LD) • Open questions help to avoid the ‘Second of Two Options’ trap. (c) conboyhillscottgliba

6. The Good Question structure • Have the information leaflet & consent form in a shared space so you can both see them • Free account • Probe content of free account • Explore responses to probes. Look for understanding of meaning and a sense of the whole picture. • Write down what the interviewee says in their own words as you go to enable effective probes (c) conboyhillscottgliba

7. Why do it this way? • Because: • Leading questions and closed questions lead to errors of reporting such as acquiescence and following the lead of the interviewer • You can implant new and inaccurate information in memory • This technique allows for exploration of meaning so that responses are not influenced by scripts • It is likely to avoid errors such as believing someone has capacity when they don’t, and missing someone who does. (c) conboyhillscottgliba

8. How? • Have the information sheet in a shared space between you and the potential participant. • Encourage a relaxed environment. • Re-state the purpose, the reason you are here. • Interviewee account. Ask the participant to tell you in their own words what they believe the study is about and what they will be asked to do. They can refer to the information leaflet as they go but if they just read it out, make a note and come back to those parts later. • Probes. Thinking about the person’s account, consider the important elements of this and probe understanding. • ‘You said the study might take a while. What does ‘a while’ mean to you?’ • ‘You told me you thought you would have to come to the clinic ‘once or twice’. What do you mean by ‘once or twice?’ • Always use how, what, where, when, why to probe, and if you find yourself in the middle of a leading question, just stop and leave the leading element unsaid. • Look for connections between items reported to be sure the person has the big picture and not just a list of facts. (c) conboyhillscottgliba

9. Avoid Leading questions: The answer is in the question ‘Do you understand?’ Closed questions: The answer can be just yes or no ‘You know this will take two hours each time you attend?’ Upgrading of responses: This is where an imprecise term is replaced by the interviewer with a ‘better’ word that may be completely wrong: ‘I’ll have a chat with the researcher’ ‘What do you think the interview will be about?’ Instead, explore what the person means by ‘chat’ (c) conboyhillscottgliba

10. Checking your decision • What was the evidence that the interviewee had a general understanding of the decision? • What was the evidence they knew why they needed to make the decision? • What was the evidence they understood in general the consequences of making the • decision? • What was the evidence they understood the consequences of not making the decision? • Did they seem to understand what would happen if they didn't agree to proceed? • Roughly how much of the necessary information did they recall? • What was the balance, for you, of really important items recalled and less important items • recalled? For instance, did they seem to recall a few very important items or a lot of less critical items? • What evidence was there that they understood the information they recalled? • How did they demonstrate that? (c) conboyhillscottgliba

11. Checking your decision Recall of important information little moderate most Understanding little moderate most Big picture little moderate most Safe decision? little moderate most (c) conboyhillscottgliba

12. About Dr Suzanne Conboy-Hill has been a consultant clinical psychologist for adults with intellectual disabilities since 1989 and modified the cognitive interview for consent after researching it for her Master's degree in forensic psychology. She has trained social workers, carers, doctors  nurses, clinical researchers, and lawyers in the technique since 1999. Her publication list is hereand LinkedIn profile here. Dr Elizabeth Scott-Gliba is a clinical psychologist who has specialised in eating disorders, mental health, and intellectual disabilities and trained in the Good Question technique with Dr Conboy-Hill.  She has since provided training to many groups of multi-disciplinary professionals. Her LinkedIn profile is here. Both worked for the intellectual disability service in Brighton and Hove under the auspices of South Downs Health NHS Trust and then Sussex Partnership NHS Foundation Trust while elaborating this technique, and frequently acted as experts to the Courts in matters of evidence and capacity. The Good Question website has more information and documents relating to consent and we hope to bring a set of prompts to a Smartphone app in the near future. We’re at http://good-question.org/ Contact: info@good-question.org (c) conboyhillscottgliba