The interviews take place throughout the UK, often in peoples’ homes but people can be interviewed elsewhere if they prefer. We usually interview people on their own, but sometimes a partner or friend may be present during the interview. All the interviews are audio tape recorded for analysis. If the respondent is happy to consent, interviews are also filmed.

In the first part of the interview people are asked to tell the story of what has happened to them, perhaps from when they first began to suspect there was ‘a problem’. The researcher does not interrupt the person while they are telling their story but asks additional questions later, which may have been prompted by issues raised by the interviewee, identified in earlier interviews or from the literature review .

It is usual for qualitative interview studies to have an overlap between collecting and analysing the interviews. Two members of the research team (the main researcher and their ‘buddy’) discuss the emerging themes after a few interviews have been completed and new ideas may be suggested. This may lead to changes in the interview guide for subsequent interviews to enable issues that are important in peoples’ stories to be explored more fully.