Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT

Abstract

Background and objectives: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain.

Methods: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire.

Results: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93).

Conclusions: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

Trial registration: ClinicalTrials.gov NCT02693665.

Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: Dr Lyon is receiving grant support from the American Cancer Society outside the submitted work to translate and adapt family centered pediatric advance care planning for teens with cancer for Spanish speaking adolescents and their families. Ms Briggs is a codeveloper of Respecting Choices. She currenly consults for Respecting Choices a Division of the Coalition to Transform Advance Care-Innovations, Inc. Ms Briggs does not receive royalties for these activities; the other authors have indicated they have no potential conflicts of interest to disclose.

Copyright © 2021 by the American Academy of Pediatrics.

Figures

FIGURE 1

Flow of participants through the trial. AYA/F, adolescent or young adult/family; TAU, treatment as usual.