Patient expectations of genetic eye services
Supplementary Documents
Appendix A: Interview Guide
Interview Guide
Note: This semi-structured interview schedule takes the form of a set of possible questions about the topics to be covered during the interview. Specific phrasing of the questions is at the discretion of the interviewer. Other relevant topics may arise during the interview that are highly relevant to the research, but are not covered in this set of possible topics.
Begin interview with the same open questions:
- Could you tell me a bit about your eye condition/the eye condition in your family?
Probe: What do you know about the condition, what is it called, when was it diagnosed/how long have you been aware of it?
- What impact has it had on you and your family?
Probe: How does it affect you, how does it make a difference in your daily life?
A.Reasons for referral and experiences of referral process.
3.How and when did you first hear of the genetic eye clinic?
4.Could you tell me why you’ve been referred?
Probe: Why now?
5.Who suggested you could be referred?
Probe: Your eye doctor, a member of your family?
6.Who actually referred you?
7.Were you told a referral had been made?
Probe: Who told you, at what stage?
8.How do you feel about being referred to a genetic eye clinic?
Probe: Hopeful, uncertain, curious, concerned.
B.Expectations and concerns about attending
9.Will anyone be attending the appointment with you? Who?
10.Have you told other family members about the appointment?
Probe: Who and why/why not?
11.Have you been given any information about what the appointment will involve? Probe: Who/where from, what sort of information?
12.Would you like to have been given some/more/less information? If yes, what type of things would you like this to include, who would be best to give this information and in what format e.g. letter, phone call?
13.At the appointment, who are you expecting to be able to talk to?
Probe: What sort of professionals/staff?
14.What topics would you like to discuss?
Probe: inheritance, diagnosis, implications for other family members, research.
15.What do you hope to get out of the appointment?
Probe: information, an explanation for the cause of the condition, support.
16.How are you feeling about attending the appointment?
Probe: Excited, nervous, interested. Why?
C.Attitudes towards genetic advances and availability of genetic testing for eye conditions.
17.What impact do you feel genetic information may have on you?
18.What impact do you feel it may have on your family?
19.What do you think about people being offered genetic tests for eye conditions?
20.If it were possible for your (family’s) eye condition, would you want to have a genetic test?
Probe: Why?
21.How do you feel about advances in the genetics of eye disease?
Probe: Positive/negative, hopeful, worried. Why?
22.What do you think about there being a specialist genetic eye clinic available?
Final question to invite comments on any areas which may not have been covered in the interview
23.Do you have any other comments or suggestions regarding the genetic eye clinic?
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