The interview study is being conducted so that we can find out in more detail about parents’ views and experiences of the BOOSTB4 clinical trial. We will invite you to participate in the interview study if you decide to take part in the BOOSTB4 clinical trial

 

What will I need to do if I take part? 

We will invite you to take part in two interviews; one around the time of your child’s second stem cell infusion and one around 6 months after your child’s last stem cell infusion. If you agree to be interviewed, we will ask you to sign a consent form.

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During the first interview we will ask you to talk about your experience of finding out that your child has OI, your decision to take part in the BOOSTB4 clinical trial and your hopes and expectations for your child. During the second interview we will ask about your child’s well-being, your day-to-day life caring for a child with OI, your thoughts on the impact of the stem cell infusions and your hopes and concerns for the future. 

The interviews can either be face-to-face or by telephone, whichever you prefer. If you would like to have a face-to-face interview, this can be in a hospital meeting room or at location convenient to you, such as your home. The interviews will last approximately 30 minutes to 1 hour and will be recorded as an audio-file. The interviews will be written out in full and any information that could identify you will be removed. If conducted in a language other than English, the interview will be translated into English and sent to researchers involved in the BOOSTB4 trial in the UK who will review the interview findings.

 

Do I have to take part?

No. It is up to you to decide whether or not to take part in the interview study. If you do agree to take part, you will be free to withdraw at any time, without giving a reason. If you would rather not take part, or if you later want to withdraw, this will not affect your participation in the BOOSTB4 clinical trial and it will not affect the health care you or your child receive.

 

What are the possible benefits of taking part?

Taking part in the interview study will not bring any immediate or direct benefit to you. However, by taking part in the interview study you will help us to understand the support and information needs of parents who are offered stem cell infusions for their child with OI which may benefit others in the future.

 

What are the possible risks and inconveniences of taking part?

It may be upsetting for you to speak about your experience of finding out your child has OI and day-to-day life caring for your child. The interview will last up to one hour. If you find the interview upsetting, you may find it useful to contact and seek support from the specialist OI clinical service that cares for your child.