Funding for this research was provided by:
Barth Syndrome Foundation (N/A)
Received: 19 June 2019
Accepted: 5 September 2019
First Online: 7 November 2019
Ethics approval and consent to participate
: The study design and related documents were approved by an independent review board in April 2018. Individuals provided verbal informed consent prior to participation in the interview and audio-recording; participants invited others (e.g., family members, translators) to participate in their interviews if they chose. Participants were offered compensation of US$100 for their time.
: All participants were informed that the aim of their interview was to collect data for scientific analysis and reporting and willingly consented to participate with this understanding.
: The authors declare that they have no competing interests.