Table 3 The interview guide is a framework of the areas relevant to the exploration of the life experiences of HCM patients with ICDs. It should be considered a support tool for conducting the interview using an open question format
From: Living with hypertrophic cardiomyopathy and an implantable defibrillator
Background | How old are you? |
|---|---|
Do you live with anybody? | |
Do you have children? | |
Early questions | What is it like to live with HCM and ICD? |
How and when did you get the HCM diagnosis? | |
When did you get the ICD? | |
General health | What do think about your health? |
How do other people consider your health? | |
In what way does the ICD affect your health? | |
Has your health changed over time? | |
What do think about your future health? | |
Professional life | Are you working/studying? |
Has your professional life been affected by HCM/ICD? | |
Do you think your future career will be affected by HCM/ICD? | |
Leisure time | In what way has you leisure-time been affected? |
Do you exercise? How does that work? | |
Did you get advice on activity levels? Do you follow this advice? | |
Family & Friends | Is family life affected by HCM/ICD? |
How did your relatives know about your HCM diagnosis and ICD? | |
What do your family and close friends think about your having an ICD? | |
What do your family and friends know about your HCM and ICD? | |
Driving | Do you have a driver’s license? Which certificates? |
Is your driver’s licenses affected by HCM/ICD? | |
Did you drive for a living? | |
What advice did you get about driving? | |
Insurance | Did your insurance company act differently based on your HCM/ICD? |
Lifestyle | What kind of food do you eat? Alcohol? Smoking? |
Medication | Which pharmaceutical drugs do you take? |
Do you take these prescribed drugs? | |
Do think that these drugs relieve symptoms/cause side effects? | |
Diagnosis of HCM | What made them suspect HCM? How long did it take to be diagnosed? |
ICD | When and why did they decide about the ICD? |
What do you think about the information before ICD implant? | |
Did you experience ICD shock (appropriate/inappropriate)? | |
How was the implant procedure? | |
Did you experience any surgical complications? | |
Does the ICD give you a sense of security? | |
Did you ever regret receiving an ICD? | |
Do you know how to turn the ICD off? | |
What is the difference between a pacemaker and an ICD? | |
Health care | What could be improved in health care in HCM and ICD? |
Did you ever contact a patient association? | |
Do you use internet/social media? For HCM/ICD communication? | |
What can the society do to improve care for HCM/ICD patients? | |
Sexuality | Is your sex life affected by HCM/ICD? |
Did you need medication to improve sexual performance? | |
Reproduction | What are your concerns about your child getting HCM? |
Pregnancy | Did HCM/ICD affect your pregnancy? |
Genetics | Have they found a mutation causing your HCM? Did the genetic counselling affect the family? |
Sleep | How is your sleep quality? |
Has you sleep been affected by HCM/ICD? |