Transforming the Nutrition Care Model for Infants with Cystic Fibrosis:
a qualitative study of clinicians’ perspectives
Abstract
Clinician perspectives may inform health service strategies to meet
optimal nutrition needs for infants with cystic fibrosis (CF). We
conducted a qualitative study with CF-specialized dietitians (RDs) and
physicians between July to December 2020 to characterize the current
state of infant nutrition care delivery and organize input into a
conceptual model to inform CF care program strategies. Among 42
participants, 36 completed survey responses and 6 completed interviews;
93% were RDs. Three global themes emerged in the current care model:
nutrition management, family-centered connections, and collaborative
care delivery. Within nutrition management clinicians emphasized
providing education, setting goals, and maintaining adequate follow-up
with families. Under family-centered connections clinicians expressed
the need to foster relationships with families and link families to
resources for assistance to social stressors such as food insecurity.
Collaborative care delivery for clinicians interviewed was defined by
sharing expertise from across the interdisciplinary team. Based on the
timing of this study, clinicians reported compelling examples for
various modes of telehealth and home weight monitoring to facilitate and
support these domains of nutrition care, including potential advantages
for education, supporting family needs, and communication. We integrate
these themes to propose a conceptual model for integration of in-person
and telehealth activities to enhance quality infant CF nutrition care
delivery. Future implementation can refine this model through testing of
practical telehealth interventions to optimize nutrition outcomes for
infants with CF.