"Patient confidentiality"

My child has a particular illness. Over the past years at clinic appointments and annual review, a researcher has asked us to participate in different types of programs while we have been attending for procedures or between seeing specialists.

This has felt invasive, uncomfortable, inappropriate and more recently - ambushed - because you are approached in an environment which already has multiple stressors.  In one case, I felt under pressure to sign the form there and then rather than go away and consider all the factors, and the person stayed in the room until I had finished. This did not feel fair.

My partner once felt ambushed as a researcher was waiting in another area for my child to arrive - this was unexpected and added another layer of stress to the day.

My first concern is about confidentiality and the ethics of sharing details of my child's appointment with researchers without parent consent.

My second concern is about being approached without warning, and feeling under pressure to understand the details of the research, and ultimately agree to participate.

I feel a better way would be for the clinic to speak to parents to ask if they would like to speak with a researcher about xyz. They can then be better able to say yes/no and better prepared to consent. This may make recruitment more challenging, however, it respects patient confidentiality, values a parent's right to participate or not participate in research, and does not unexpectedly or unnecessarily add stress to the appointment/procedure.