Effect of FAmily CEntered (FACE) advance care planning (ACP) on families’ appraisals of caregiving for their teens with cancer.

Author:

Baker Justin N.1,Thompkins Jessica2,Friebert Sarah3,Needle Jennifer4,Wang Jichuan5,Cheng Yao6,Lyon Maureen7

Affiliation:

1. St. Jude Children's Research Hospital, Memphis, TN;

2. Children's National Hospital, Washington, DC;

3. Akron Children's Hospital, Akron, OH;

4. University of Minnesota Children's Masonic Hospital, Minneapolis, MN;

5. The Children's Research Institute, Washington, DC;

6. National Children's Hospital, Silver Spring, MD;

7. Center for Translational Research/Children's Research Institute, Washington, DC;

Abstract

e22533 Background: Little is known about how well family caregivers respond to participating in pACP. The research objective was to understand the effect of FAmily CEntered pediatric Advance Care Planning (FACE pACP) for teens with cancer (FACE-TC) on families’ appraisals of caregiving for their child over time. Methods: 126 adolescent/family dyads were randomized to either FACE-TC intervention or treatment as usual control. FACE-TC is three weekly, 60-minute pACP sessions with a trained/certified facilitator. Family Appraisal of Caregiving Questionnaire subscales assessed outcomes. Generalized Estimating equations (GEE) model was used to examine outcome change over time. The effect of intervention on the change was examined by the interaction between time and intervention. Results: 126 adolescent/family dyads completed baseline assessments. 102 dyads completed the 3-month assessment. Adolescents were mean age of 17 years (range 14-20); 57% female; 79% Caucasian. Family participants were mean age 46 (range 19-67); 83% female; 82% Caucasian. Positive caregiving appraisals subscale items are “Caring for __ is satisfying; It is a privilege to care for __; Caring for __ has made me feel closer to him/her; I am able to comfort __ when he/she needs it; I feel confident I can handle most problems in caring for __; I feel useful in my relationship with __; I am committed to caring for __”. FACE pACP significantly increased positive caregiving appraisals at 3 months post-intervention, compared to controls, (β = 0.20, Confidence Interval = 0.03-0.37, p = 0.0189). No significant differences were found between groups for the subscales: burden, distress or family well-being. Conclusions: FACE pACP significantly increased positive caregiver appraisals compared to controls. The family caregiver’s role is critical for the well-being of teens with cancer. Findings identified positive aspects of caregiving in the context of pACP without increasing caregiver burden or distress. Clinical trial information: NCT02693665.

Funder

U.S. National Institutes of Health

Publisher

American Society of Clinical Oncology (ASCO)

Subject

Cancer Research,Oncology

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