We analyzed demographic and quantitative data from demographic/ice-breaker questions asked at the beginning of each interview, to generate descriptive statistics about the participant sample in Excel (Table 2). We used modified Grounded Theory [45, 46] to analyze qualitative data from interview transcripts and fieldnotes. Interviews were transcribed by an outside firm; the first two authors transcribed our own fieldnotes. All patient interview and focus group transcripts and participant-observation fieldnotes were fully de-identified prior to hand-coding, with pseudonyms chosen by the participant (including nicknames, initials, and their preferred spelling) inserted to replace the spelling of any patient or provider names – these pseudonyms appear throughout this article. No member of the research team had access to participants’ real names during data analysis.

Participant characteristics (n = 27)

Median 28 years old

Mean 28 years old

Range 22–37 years old

(wider in participant-observation sample)

Average 1–2

Range 0–4

Modified Grounded Theory is an approach to analyzing ethnographic and qualitative research that allows ideas, themes, and relationships between themes to emerge organically from within the data, rather than entering into data collection and analysis with a specific hypothesis to be tested [45]. In standard modified Grounded Theory technique, the first two authors developed a codebook based on a combination of salient concepts from existing literature and early themes evident from open-coding of their fieldnotes from participant-observation. They each coded the first three interview transcripts and iteratively discussed emerging themes; revising and finalizing the codebook in the process. The first two authors then hand-coded all interviews and field notes, meeting regularly to compare the coding and continually refining the codebook until reaching full inter-rater agreement. With any changes to the codebook, transcripts that had already been coded were re-coded. After completing coding, the first two authors constructed a theoretical schema or concept map from the emergent themes to visually depict and further interpret relationships between the recurring topics and emic codes used by participants to describe their experiences.

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