Cystic fibrosis mental health research priorities: Qualitative content analysis of cystic fibrosis community and provider survey

ABSTRACT

Background: Mental health is among the top three research priorities of the CF community [1]. In 2020-21, the Cystic Fibrosis Foundation Mental Health Research Prioritization Working Group met to designate areas of focus for CF mental health research [2]. To elicit broad input to inform this work, a mixed-methods study was conducted. In June 2020, a 22-item survey was sent via email and social media to CF health care providers, people with CF, family caregivers, and other CF community members. We aimed to analyze qualitative content to add depth to quantitative findings. Method(s) Three hundred fifty-two providers and 693 community members completed the survey, which included three open-ended questions Q1) When thinking about research topics specific to mental health, where are the current gaps in knowledge that should be prioritized for future research? Q2) Is there anything else regarding mental health and the needs of the community you would like to share? Q3) Considering the impacts of the COVID-19 pandemic, are there additional mental health topics that are (Figure Presented) Figure 1. Cystic fibrosis (CF) mental health research priorities of all respondents according to frequency. Overarching top-line categories and general codes for open-ended survey responses of CF health care providers, people with CF, family caregivers, and other CF community members not covered by the survey questions? Reponses containing more than one main idea were subdivided into topic-specific codable items. For Q1 and Q2, a codebook guided hierarchical placement of each item into an overarching top-line category with corresponding general code and, if applicable, one or more specific codes and populations or settings. A simplified process designated only one major theme per item for Q3. Three teams of one CF researcher and two CF community members coded the first 20% of their assigned items by consensus and then worked in pairs to independently double code the remaining 80%. Two-sided t-tests were adjusted with the Bonferroni correction using a significance level of less than 0.1. Result(s) One thousand three hundred ninety-one provider items and 1638 community items were coded for Q1 and Q2, and 565 provider and 323 community items were coded for Q3. Strong inter-rater agreement was obtained across coding dyads (71-90%). For Q1 and Q2, the most common top-line priorities were mental health conditions;living with CF;screening, assessment, and intervention;systems-level barriers and facilitators;and effects of modulators (Figure 1). Strong agreement was found in the ranking of top priorities by community members and providers, although providers were significantly more likely to mention effects of modulators;screening, assessment, and intervention;and substance misuse, and community members were significantly more likely to mention stress and trauma. Respondents also noted concerns captured by a wide range of specific codes (e.g., access to mental health care, role and life changes, family relationships), populations (e.g., children), and settings (e.g., inpatient). For Q3, isolation and anxiety emerged as the top COVID-19 concerns, with isolation more salient forcommunity members and anxiety for providers. Conclusion(s) Qualitative analysis of a large survey of multiple stakeholders provided input on top research priorities for CF mental health. This information facilitated consideration of diverse perspectives to identify gaps and select areas of focus for future researchCopyright © 2022, European Cystic Fibrosis Society. All rights reserved