Interview questions – attachment 2

INTERVIEW GUIDE: Parents

Interviews will be conducted using broad topics to guide discussion between the researcher and the participant. Examples of questions relating to each topic are provided along with examples of prompts used. Because it is anticipated that the interviews will follow a conversational style and will be guided by the participant’s responses, topics will not always be covered in a particular order nor will questions be asked using the exact wording outlined below.

Introduction from the researcher (Ms. Elyssia Bourke)

“I am interviewing you about your experiences of Klinefelter syndrome (KS) in your family. The interview will be fairly informal, more like a conversation. I will ask you about your son who has KS, how you think the process of obtaining a KS diagnosis can be improved as well as your views on population screening for KS. I am conducting this interview purely for research. If you have any further questions about KS I will do my best to answer them. However there may be some that we will discuss in greater detail at the end of the interview. If there are any topics that you do not feel comfortable discussing, please let me know and we will move on to the next topic.”

BROAD TOPIC / EXAMPLE QUESTION
General conversation starter /
  • Can you tell me a bit about your son who has KS?

Diagnosis of KS / Think back to the time when (insert name/s) was first diagnosed with KS
  • Can you walk me through how you came to receive the diagnosis?
Prompt:
How was it like before (insert name/s) was diagnosed with KS?
Did you have any concerns about (insert name/s) or his development before the diagnosis?
If so, when did you first become concerned?
Did you notice anything that was different about (insert name/s) compared to your other children/other children his age?
Did he have any problem with school?
Did he have any physical differences when compared with other children?
Did he have any problems socially?
Who (in terms of health professionals) did you see before the diagnosis?
Who ordered the tests to confirm the diagnosis?
Was it an incidental finding or did you go to the doctor because you were worried about (insert name/s)?
  • What was it like for you throughout that process?
  • What was it like for you when you found out that (insert name/s) had KS?
  • Was KS well explained to you at the time?
  • How old was [insert name/s] when he was diagnosed?

The individual/s with KS /
  • What is it like for [insert name/s] now?
  • How does having KS impact on him?
  • Has (insert name/s) life changed in any way (positive or negative) since to the diagnosis for (insert name/s)?
  • Has he had any treatment or extra care due to the diagnosis (such as – testosterone replacement, extra help at school, counselling, IVF)
  • If not, has this been offered to you?
  • If so, have you found this to be helpful?
  • Who manages (insert name/s) KS?
  • Do you have regular contact with your GP? Is he/she helpful regarding any concerns you may have?
  • How does (insert name/s) diagnosis of KS impact on the rest of the family?
  • How does it impact on you?

Process of obtaining a KS diagnosis /
  • Do you think (insert name/s) could have been diagnosed earlier?
If yes
  • How would that have been?
  • Do you think you would have done anything differently if you had had an earlier diagnosis such as introducing treatment (eg: testosterone replacement) for (insert name/s)?
  • Would you have wanted (insert name/s) to have been diagnosed earlier?
  • At what age do you think children with KS should be diagnosed?

Population screening for KS
1) Overall views
2) Benefits
3) Concerns
4) Decision making
5) Barriers /
  • Do you think it would be worthwhile introducing a test called population screening which is where all individuals in a group (for example all boys in Victoria) are given a test at a certain time in their lives to see if they have KS?
  • At what stage do you think screening for KS should be offered? Why do you think so?
  • If your child had been screened at (insert number of years suggested by participant), what do you think would have been different for you and your family?
  • What do you think might be the benefits of KS population screening?
Prompt:
What might be the benefits from the perspectives of parents?
What might be the benefits from the perspectives of the affected child?
  • What do you think might be some drawbacks of KS population screening?
Prompt:
From the perspectives of parents?
From the perspectives of the affected child?
  • What factors might influence parents’ decision-making as to whether they want their child to be tested for KS?
  • Will these factors differ depending on how old the child in question is?
Prompt:
Think back to when your child was younger. What would have influenced your decision as to whether your child should be tested or not?
  • What might be some potential barriers preventing parents from having their child tested for KS?
  • On balance, do you think KS screening should be routinely employed after birth?
If yes
  • Why do you think so?
If no
  • Why not?
  • How do you think parents can be engaged in discussing KS screening?
  • What information do you think parents need to be provided with when considering screening for KS?
  • How do you think this information should be presented?
Prompt: Some suggestions have been giving written brochures, verbal information or both. What do you think of these options?
  • When do you think this information should be given to parents?

Extra information /
  • Is there anything else that you would like to talk about in relation to (insert name) today?
  • Is there anything you feel like we haven’t discussed today or any unresolved issues you feel that you have in relation to KS and (insert name’s) diagnosis?
  • Is there anything else that you want to add?
  • How did you find the interview overall? Did you find talking about the issues useful?
  • Is there anything you think I could change for the future?

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Version 1, 30/01/2012