Funding for this research was provided by:
PENTA Foundation (529958)
Monument Trust (MON5836)
Received: 21 January 2019
Accepted: 31 July 2019
First Online: 27 August 2019
Ethics approval and consent to participate
: Patient information Sheets (PIS) and consent forms were reviewed by staff and young people at two voluntary support groups to ensure the language and content were easily understood and age appropriate. Ethical approval was obtained from Leicester Research Ethics Committee (reference 12/EM/0012), who waived the requirement for parental consent for participants aged under 18 years where the participant demonstrated their own capacity to consent. This involved study research nurses having discussions with clinicians and/or voluntary sector staff about the young person’s physical and emotional state as well as their capacity to consent, prior to the young person being approached to participate in the study. Furthermore, to ensure young people had adequate information to decide whether to participate in the study, research nurses read the PIS to the young person and answered any queries. In addition, all the points in the consent form were discussed and questions posed throughout the consent process to help the research nurse decide if the young person had the ability and maturity to consent to participating in the study. Participants gave written informed consent, except where they lacked the capacity, in which case parents or guardians gave written informed consent and participants gave written assent.
: Not applicable.
: The authors declare that they have no competing interests.