Part 1 (interviews): Data collection

Participants with T1D will be invited to complete the World Health Organisation– 5-item wellbeing index (WHO-5) [39] and Problem Areas in Diabetes (PAID) [40] questionnaires via a direct link onto a secure questionnaire per participant on JISC Online Surveys prior to conducting qualitative semi-structured interviews on a one-to-one basis. Interviews with nominated peer/siblings will be conducted separately. Joint (dyadic) interviews with the young people with T1D and their sibling/peer will be accepted if requested by the young people with T1D.

A support person/buddy will be permitted if requested by the young person. This will be made clear on the PIS. The buddy will be provided with an information sheet to explain their role ‐ to ensure that the interview is conducted sensitively and respectfully and to support any needs they may have. They will not be considered as part of the research interview. Buddies’ views will not be sought nor reported by the interviewer during the interview, and through the information sheet they will be dissuaded from commenting on or influencing the young people with T1D.

Interview guides will provide a framework for individual qualitative interviews that have been written with a blend of questions around specific areas of living with diabetes–such as at school/work/university and in interactions with family, friends, and significant others–as well as broader questions around day-to-day life. The intent of this approach is to encourage the participant to open-up through storytelling and thus for the researcher gain a deep understanding of the lived experience and challenges in different parts of life in their own words. The interviewer will seek to understand what they would find helpful (in a non-clinic setting) to address some of the challenges they face with diabetes. Interview guides will evolve iteratively per standard qualitative research practice. (Interview guides are provided in S1 Appendix “Interview Guides”).

Visual aids will be available during the interviews to help participants to articulate emotions and feelings associated with their experiences. These will be used at the discretion of the researcher where a participant struggles to articulate their thoughts/feelings or is not forthcoming with feelings or emotional impact. The stimuli were developed from words used by PPI participants, and distilled from literature relating to basic emotions [41] plus the researcher’s own experience. Basic internet searching for copyright free images related to specific emotions was used to create illustrations.

Confidential individual or dyadic interviews will be held online with a secure VoIP (Voice over Internet Protocol) platform (such as Teams (preferred), Skype, or FaceTime) depending on the participant’s preferred channel for a real-time video call. If VoIP technology cannot be used (eg due to data charge concerns from participants or no webcam enabled device), interviews will take place by telephone. This remote approach is based on the anticipated continued caution in face-to-face interactions owing to the COVID-19 pandemic and aims to enable participation of a wider demographic of participants who previously may not have been willing or able to attend an in-person interview. The researcher will follow best practice for conducting qualitative research interviews online/by telephone effectively. This includes building rapport prior to “meeting” through email/messages, assessing non-verbal cues, and understanding the lived experience in a home/natural environment. It also includes logistical elements such as using private physical and online spaces for the conversation to protect participants’ privacy as well as letting them know that they can pause the interview if they are interrupted (since the researcher may not be able to see if another person has entered the room) [42].

After their interview, young people with T1D participants will be asked how they felt about participating in the research and whether they would do something similar or recommend a friend to participate in similar research in the future. A “Thank You” communication will be sent to all participants along with the compensation after individual interviews.