• Cancer nursing · Jul 2019

    Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers.

    • Verna L Hendricks-Ferguson and Joan E Haase.
    • Author Affiliations: Saint Louis University School of Nursing (Dr Hendricks-Ferguson), Missouri; and Indiana University School of Nursing (Dr Haase), Indianapolis.
    • Cancer Nurs. 2019 Jul 1; 42 (4): E22-E30.

    BackgroundParents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers.ObjectiveThe aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers.MethodsTen parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers.ResultsResults included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE.ConclusionThe COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents.Implications For PracticeFindings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.

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