Clinical communication preferences in cystic fibrosis and strategies to optimize care

The importance of optimizing communication between clinicians and individuals and families living with cystic fibrosis (CF) about daily care, adherence, and related psychosocial concerns is well documented. The purpose of this study was to gain an understanding of interpersonal communication experiences and preferences among individuals and families living with CF as they engage with the clinical team. The study also aimed to reveal opportunities for enhancing future interpersonal communication practices.

Five U.S. CF care centers participated in the following activities: (a) On-site observation of clinic interactions during outpatient visits; (b) On-site 1:1 interviews with individuals living with CF, their family members, and CF clinicians; (d) Focus groups conducted in person with CF care team members; (d) Focus groups conducted virtually with adults and family members with CF. Content analysis of transcripts and constant comparative methods were used to identify emergent themes.

Four themes related to participants' needs and preferences for clinic interactions emerged during analysis: (a) eliciting psychosocial concerns, (b) addressing childhood development and transitions, (c) negotiating agendas and sharing decisions, and (d) educating to enhance CF conversations.

CF clinicians and individuals and families living with CF expressed the need for resources and training to engage in better conversations with each other. Participants identified areas of high priority, including working together around social, psychological, and economic challenges, preparation for transition to adulthood, and sustaining daily care. Findings point to the value of developing advanced communication skills that foster trust-building, negotiating agendas, active listening, and collaborative goal-setting.