Focus Groups

Study Design
We conducted focus groups with patients with ILD and self-identified caregivers. We chose a qualitative study design using content analysis as our methodologic framework to gain a comprehensive understanding of the experiences, wants, and needs of patients and caregivers seeking medical care at ILD clinics.

Participants and Recruitment
Eligible participants had to reside currently in the United States. Participants were not excluded if they were not currently or had not previously received care at a PFF CCN site. Participants were recruited at the PFF 2019 Summit at an informational table and through a recruitment flyer distributed electronically to the PF Warrior community e-mail distribution list. Informed consent was obtained from all participants at the time of the focus group. Participants were not compensated for their time.

Data Collection
Real-time focus groups were conducted using a secure, web-based meeting interface and facilitated by authors (B. A. G., C. H., and M. M.) from November 2019 through January 2020. The focus groups followed a semistructured, open-ended approach to elicit participants’ opinions and experiences of ILD clinics (e-Appendix 2). All focus groups were audio recorded and transcribed verbatim. Three focus groups initially were planned, but new themes emerged from the second and third groups. Therefore, two additional focus groups were conducted, after which thematic saturation was achieved based on debriefing after group meetings and note comparison by the moderator (B. A. G.) and comoderators (C. H. or M. M.). This number of groups is consistent with existing literature examining the relationship between number of focus groups conducted and thematic saturation.4,5

Analysis
Transcripts were entered into Atlas.ti version 8.0 software (ATLAS.ti Scientific Software Development GmbH) and analyzed for content using a general inductive approach. Analysis was completed by organizing the data through open coding and repeated comparisons to identify key themes. The primary coders (B. A. G. and M. M.) met regularly to discuss coded data, to reconcile differences, and to achieve consensus. Both coders double-coded all focus groups. Coded data were analyzed within and across groups to identify the emergent themes.