Little is known about how families respond to pediatric advance care planning. Physicians often are concerned that initiating pediatric advance care planning conversations with families is too distressing for them.
But a first-of-its-kind clinical trial led by Maureen E. Lyon, Ph.D., F.A.B.P.P., principal investigator, and Jessica Thompkins, B.S.N, R.N., C.P.N., research nurse coordinator, both at Children’s National Hospital, directly measured families’ appraisals of caregiving as one potential benefit to pediatric advance care planning.
The clinical trial, summarized in a video abstract, shows that compared to controls, families’ participation in Family-Centered Advance Care Planning for Teens with Cancer (FACE®-TC) 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 benefit and tolerability of this person-centered/family-supported model of pediatric advance care planning,” Thompkins says.
Families randomized to the FACE®-TC pediatric advance care planning intervention showed significantly greater positive family appraisals of caregiving and overwhelmingly, families reported the experience as worthwhile without adding undue distress or strain, compared to controls.
“This evidence meets practice guidelines for an intervention that could be extended to other adolescents living with serious illnesses and their families,” Dr. Lyon adds.
The clinical trial’s results also showed that FACE®-TC families significantly increased positive caregiving appraisals at three months post-intervention compared to controls. No significant differences were found between groups for strain or distress.