Αλέξανδρος Γ. Σφακιανάκης: Paediatric Cystic Fibrosis Paediatric interview schedule

Sunday, June 2, 2019

Ice Breakers Question's:
• Thank you for taking part
• What were your first thoughts when you were asked to take part in this research?
• Did you have any hesitations about agreeing to take part?
• So to begin with, can you describe what you do in a typical day?
- Weekday/weekend difference
- Spare time

Impact of cystic fibrosis on the patient's personal life:
• Could you tell me what it is like to live with cystic fibrosis
- Discuss the challenges of living with cystic fibrosis
- Has it always been this or were other aspects/things more difficult to cope with when you was younger?

Do you tell others about your cystic fibrosis?
- Who do you tell?
- What do you tell them?
- How do you find telling others about your cystic fibrosis?
- Why don't you tell others about your cystic fibrosis?

How do you find it sticking to your treatment regimen?
- Does anyone help you stick to your regimen? (Who?)
- Are there any aspects that are more difficult to stick to?
- Has this changed over time?
- Does it change depending on the situation/circumstances?
- Are there any treatments you tend to 'miss out'?
- Are there any treatments you wish you could 'miss out'?
- How do you think it would make you feel if you did miss those treatments out?

Areas for further elaboration may include:

Not enough time in the day with school, etc
The belief that the medical regimen is not benefitting them
Are they self-prescribing according to their symptoms?
Weekday/weekend difference
Are there any situations where you are less likely to take your medication/complete your, eg, physiotherapy?

Areas for further elaboration may include:

At school
At a friend's house
What makes it harder to complete your regimen in these situations?
An area for further exploration may include the identity the medical regimen provides them with

Risky Health Behaviours:

When I say 'risky behaviours', what does that make you think of?
Do you think that some things are more risky for you because of your cystic fibrosis?
What things would 'not be good' for your health?

Examples may include:

Do you feel that these behaviours would have an impact on your cystic fibrosis?
Have you ever been told that any of these behaviours would be bad for your cystic fibrosis?
- Who has provided you with this awareness?
- How does it make you feel towards these behaviours?

Do you know anyone who takes part in these behaviours?
- Who?
- How does that make you feel?

Have you/would you ever be motivated to try one of these behaviours?
- What would motivate you?
- What would stop you?

Why do you think people do engage in these behaviours?
Do you think any cystic fibrosis patients engage in risky behaviours?
- Why do you think a cystic fibrosis patient would engage in these behaviours?
- Why do you think a cystic fibrosis patient would not engage in these behaviours?

Family and Friends:
• If you did (eg, smoke), would you be open with family and friends about your (eg, smoking?) What do you think they would think about it? What would their reaction be?

'Other' may include

Examples may be:

Consultants
Family
Friends
Online forums
Do you ever speak to any other cystic fibrosis patients?
- Is this online?
- Is this face to face?

Conclusion:
• What would you want to tell a younger patient with cystic fibrosis?
- eg, about going to school with cystic fibrosis
- eg, about telling others about their cystic fibrosis

What would you tell a family who had just had a child with cystic fibrosis?
Honestly if you were to have this discussion with another person (eg, someone who has cystic fibrosis), outside of this research, would this conversation be the same?
Do you have anything else to add?

Alexandros Sfakianakis
Anapafseos 5 . Agios Nikolaos
Crete.Greece.72100
2841026182

6948891480

alsfakia@gmail.com