Clinical communication preferences in cystic fibrosis and strategies to optimize care

Abstract

Background 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. Methods 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. Results 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. Conclusion 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.

Promoting emotional wellness in children with CF, part II: Mental health assessment and intervention

“…It is critical to partner with families to understand their goals and respect their autonomy. Collaborative conversations can promote a greater mutual understanding of the beliefs and worries of the family and multidisciplinary CF team, improve trust, and identify possible caregiver, child, and health care system barriers 51,73,74,76 . Interventions to bolster social support and enlist community resources could include involving extended family members in caregiving, targeting financial stressors or food insecurity, addressing caregiver mental health concerns and substance misuse, and engaging child protective services if needed 75,76 …”

“…Completing pulmonary function tests (PFTs) can be strenuous, trigger cough, and lead to a change in treatment plan including increased daily care and/or an inpatient hospital stay. Children may also worry about disappointing their medical team, family, and themselves if they have experienced a decline 51 …”

“…Although disparities and challenges related to social determinants of health and caregiver stress exist among children with CF, the prevalence of trauma and its effects on the course and management of CF remain understudied 14,51,70 . Some parent caregivers of children with CF report difficulty with relationships (20.8%), finances (10.9%), and substance misuse (8.4%), 14 problems which are associated with psychosocial risk and ACEs 14,20,66,67,70 .…”

Year in Review 2020: Multisystemic impact of cystic fibrosis

“…The relationship between PwCF, caregivers, and CF care teams allows for productive shared decision‐making, however, communication barriers can lead to difficulties. Therefore, Cooley et al 45 evaluated communication skills at 5 US CF Centers through observation of clinical visits, 1:1 interview, and focus groups with CF team members, PwCF, and caregivers. Four main themes emerged (1) eliciting psychosocial concerns, (2) addressing childhood development and transition, (3) negotiating agendas and sharing decision‐making, and (4) educating to enhance CF conversations.…”

Partnership Enhancement Program: Piloting a Communication Training Program for Cystic Fibrosis Care Teams

“…Perceptions about barriers to CF care differ between people with CF, caregivers, and care teams, and, when not explored, lead to missed opportunities to improve adherence and CF outcomes (4,5). Cystic fibrosis clinicians, people with CF, and caregivers have explicitly acknowledged the value of communication training to gain skill understanding and responding to the preferences and values of people with CF and caregivers to strengthen the coproduction of CF care (3,6).Recognizing the importance of productive patient-clinician communication to improving health outcomes and containing health care costs (7,8), organizations such as the Academy of Communication in Healthcare (ACH) developed communication training programs for clinicians (9) that are designed to increase physician and patient satisfaction, patient health outcomes, and institutional patient experience scores (10,11). The ACH relationship-centered communication training program teaches 3 skill sets (establishing trust, creating open dialogue, and setting goals by partnering) to deepen understanding about what matters to the patient and collaboratively create treatment plans (12).…”