Beyond the Label: How Naming and Framing Impact Pediatric Palliative Care Acceptance.

CONTEXT: Pediatric palliative care (PPC) underutilization persists despite proven benefits. Some barriers stem from the misconception that PPC is exclusively for end-of-life, causing parental distress and reticence to engage. This study explores the origins of these misconceptions to enable smoother introduction of this helpful service line.

OBJECTIVES

This study examines how program naming and the framing of PPC services impacts perceptions of, and receptiveness to, PPC services among community-dwelling parents in the United States.

METHODS

A national sample of 363 U.S. parents recruited via Amazon Mechanical Turk (MTurk). Participants were randomly assigned to one of four vignettes introducing a PPC team. Introductions varied team name ("palliative care" vs. "Pediatric Advanced Care Team [PACT]") and frame (with/without explicit end-of-life mention). Questions assessed demographics, perceptions of, and willingness to engage with, PPC. Analyses included inferential statistics and Exploratory Factor Analysis (EFA).

RESULTS

There were no significant differences in the reception of PPC based on team name or the inclusion of end-of-life language. EFA identified two latent factors accounting for 76.46% of the variance: 1) Best Interest (parent's perception that the services were beneficial) and 2) Parental Distress (parent's perception of being overwhelmed when considering the service).

CONCLUSION

Parental perceptions of PPC are predicated on underlying factors that may constitute referral barriers. In this study, neither renaming the team nor excluding the mention of end-of-life impacted participants' enthusiasm. Future interventions should look beyond name changes to characterize and directly address the latent factors of parental distress and the perceived best interests of the child.