What is the project about?
This study is aimed at working age people living with myeloma after the first line of treatment, and their families. We want to increase our understanding of what is it like to live with myeloma, and what matters most to those who live with it and their families. We would like to find out more about those who live with myeloma and their families’ priorities for treatment and supportive care and hear their thoughts on what would help them most.
Why are we doing this research?
By doing this study we hope to understand the views and experiences of people living with myeloma and use this for informing their care and treatment. As we will be talking to those who underwent the first line of treatment for myeloma in Czech Republic, Germany and Poland, we hope the insights we gather from different experiences will help improve care and support.
Who is invited to take part?
We are interested in talking to people who live with myeloma who had at least one line of treatment while they were of working age. We are also interested in speaking with their family members. Working age is different in each country. In Czech Republic we are looking for people who were 63 or younger when they started treatment, in Poland men who were under 65 and women who were under 60 or younger when they started treatment and in Germany people who were 65 or younger when they started treatment.
What happens if someone decides to take part?
Those who decide to take part in the study will be asked to sign an online consent form. We will then arrange an interview, during which we will ask questions about people’s experiences of living with myeloma, and treatments options they have been offered. This interview will be conducted by Dr Liz Forbat or Dr Kinga Goodwin, and it will be conducted either on the phone, or on Microsoft Teams or Zoom. Our respondents will decide which of these suits them best, and what date/time work for them.
The interview will be conducted in our respondents’ first language. Although the researchers are based in Scotland, we will provide a trusted interpreter, and make sure that language does not become a barrier to understanding people’s experiences. Dr Kinga Goodwin, who is a native Polish speaker, will conduct the interviews in Polish.
This interview will be recorded: this recording will be kept in a secure location and deleted once the interview is transcribed. People can choose to take part alone or with someone else in their family.
Participation in the study is totally voluntary. Those who decide that they would like to take part can withdraw at any time without any need to give us a reason, and with no consequences.
People’s participation is confidential, and their personal information will not be shared with Myeloma Patients Europe or anyone in their care team. If someone decides to not take part or withdraw, their relationship with Myeloma Patients Europe and all other services will not be affected in any way.
Are there any risks for those who decide to take part?
Talking about myeloma might be upsetting. We know that those who live with this condition may frequently be thinking about it but taking part in a research interview may mean they have to think and talk about their illness in a different way than usual. Often, research participants find this really positive, but it is possible that some may find it upsetting. Our research team is very experienced in talking with people who are unwell, or live challenging lives in difficult circumstances, and treat all information shared as strictly confidential. Participants can stop an interview and withdraw at any point. After the interview, they will be provided with some resources and points of contact so that they have people to contact if they want to debrief.
What are the benefits of taking part?
There are most likely no direct benefits to our respondents, but we hope their experience will help inform the policy and treatment services for people living with myeloma.
Data Protection
All data will be stored securely on a password protected system at the University of Stirling.
Legal basis for processing personal data
As part of the project we will be recording some personal data including participants’ names, medical conditions, and email addresses so we can send them copies of study results. This information will be processed in accordance with the General Data Protection Regulation (GDPR). Under GDPR the legal basis for processing people’s personal data will be public interest/the official authority of the University. Participants will have the right to request to see a copy of the information we hold about them and to request corrections or deletions of the information that is no longer required. They will also have the right to object to us processing relevant personal data but it is important to note that once we begin analysis it may not be possible to remove specific data from the study.
This Research has received Ethics Approval [7290] from the University of Stirling’s General University Ethics Panel.