Methods

The COREQ guidelines for qualitative research have been used to present our methodology.
Two interviews were conducted with “xxx” and her Mother across a two month time period. Initially an interview was conducted electronically by email and then a follow-up telephone interview was used to clarify any ongoing questions and to enable a more nuanced emotional assessment. The interviews were conducted by the primary author, a male junior doctor working in otolaryngology who has received training in qualitative research through the completion of a postgraduate diploma in medical education. The interviewees were knowlageable about the goals of the study and participated out of a willingness to help others with HHT and informed consent was provided.
A phenomenological approach was taken to interviewing and data analysis given the experiential nature of the questions to be answered. Sampling was purposive with a sample size of one. Data were collected at the time of the interviews via field notes. The telephone interview lasted approximately 45 minutes. Data analysis was performed by the primary author and a third party using thematic analysis; themes were compared for consistency and congruency.