Appendix 5: Semi-structured interview template
1. Introductory remarks to explain the nature and purpose of the study.
Good afternoon/evening. Thank you for taking the time to join our discussion on the supportive care needs of patients with desmoid fibromatosis. My name is ____MODERATOR____, and I am __ASST MODERATOR____.
In particular, we hope to learn more about the physical, psychosocial and practical challenges you face as a desmoid fibromatosis patient and on how your experience has been of the healthcare system: What kinds of things have been helpful to you and what kinds of things you might have wanted or needed but did not receive.
Before we begin, let me suggest some things to make our discussion more productive. Because we’ll be recording for an accurate record, it is important that you speak up and that you only speak one at a time. We do not want to miss any of your comments. We’ll only use first names here. No reports will link what you say to your name. In this way, we will maintain your confidentiality. In addition, we ask that you also respect the confidentiality of everyone here. Please do not repeat who said what when you leave this room. During the two hours we’ll be here, I will ask you questions, and I will listen to what you have to say. I will not participate in the discussion. So please, feel free to respond to each other and to speak directly to others in the group. We want to hear from all of you. We are interested in both majority and minority viewpoints, common and uncommon experiences. So I may sometimes act as a traffic cop by encouraging someone who has been quiet to talk, or by asking someone to hold off for a few minutes.
Does anyone have a problem with audio recording of this focus group? Okay, then we will turn on the recorder and start now.
2. Introduction participants.
First of all, can you briefly introduce yourself (first name, age, tumour localisation, treatment received).
3. Main open-ended questions
CHALLENGES.
-When we think about your health, what would you say the term quality of life means to you?
* What factors would you say contribute to your quality of life?
* Which factor would you say is / are the most important to you?
-With that in mind, in what ways has your desmoid fibromatosis diagnosis affected your quality of life?
-With that in mind, in what ways has your treatment for desmoid fibromatosis diagnosis affected your quality of life?
-With that in mind, in what ways has the watch and wait policy affected your quality of life?
PROBE AS NECESSARY:
e.g. in these areas, how has it affected you ….
-Physically: e.g. symptoms … .. how?
-Functionally: e.g. ability to get about / wash / dress …. How?
-Psychologically: e.g. feeling worried/ stressed / tense ….. How?
-Socially: e.g. impact on relationships, social life …….How.
- Other: (Financial/ Spiritual).
-Could you tell me more about that and how you deal(t) with challenges/problems?
-What would you say has been the most important / biggest factor(s) influencing your quality of life since your diagnosis?
-What is the meaning of symptoms for you in relation to disease activity (e.g. fear of progression) and response to treatment?
4. Main open-ended questions
(UNMET) CARE NEEDS.
-I would like to ask you to talk about the various needs you have as a desmoid fibromatosis patient. -What has your experience been with receiving healthcare services/supportive care for your desmoid fibromatosis?
PROBE AS NECESSARY:
What was good about that care you received till now? Why?
What was bad about the care you received till now? Why?
What did you miss? Why?
What is your experience with referral to supportive care and use of supportive care options?
-I’ll now ask you to talk about your needs for a number of different areas. I would be interested to learn for each area whether you have needs in this area and whether or not your needs have been addressed (what is/was helpful and what is/was missing).
Informational needs.
Psychological/Emotional needs positive and negative.
Physical needs.
Risk behaviour needs.
Practical needs.
Social needs.
Spiritual needs.
Health care needs.
5. Main open-ended questions
EXPECTATIONS AND PREFERECES.
-What are your expectations of care for patients with desmoid fibromatosis?
-What are your preferences for care for patients with desmoid fibromatosis?
PROBE AS NECESSARY:
If you could design the perfect expert center for desmoid fibromatosis patients what would it look like for patients that are undergoing treatment? What would it look like patients in watch and wait phase? Please be as creative as possible as we are interested in your ideas.
What kind of programs would be helpful to you in dealing with the challenges of desmoid fibromatosis?
What formats are you most interested in? Would you prefer groups, individual, face-to-face, online, or a combination?
6. Summarise the issues raised during the interview and identify which issues are the most important.
-We have discussed a number of things. These are…MODERATOR SUMMARISES POINTS…..
-Out of everything we have talked about today, what are your top three needs and how could they be better met?
- Is there anything else about needs related to desmoid fibromatosis that you can think of that we have not already discussed?
Thank you again for taking the time to participate in this discussion.