Literature DB >> 29620556

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

Verna L Hendricks-Ferguson1, Joan E Haase.   

Abstract

BACKGROUND: Parents 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.
OBJECTIVE: The 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.
METHODS: Ten 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.
RESULTS: Results 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.
CONCLUSION: The 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 PRACTICE: Findings 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.

Entities:  

Mesh:

Year:  2019        PMID: 29620556     DOI: 10.1097/NCC.0000000000000589

Source DB:  PubMed          Journal:  Cancer Nurs        ISSN: 0162-220X            Impact factor:   2.592


  6 in total

1.  COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.

Authors:  Verna Hendricks-Ferguson; Amy R Newman; Katharine E Brock; Joan E Haase; Jennifer L Raybin; Shermini Saini; Karen M Moody
Journal:  J Pediatr Nurs       Date:  2021-08-25       Impact factor: 2.145

2.  Parent-Provider Communication in Hospitalized Children with Advanced Heart Disease.

Authors:  Mary Katherine Miller; Elizabeth D Blume; Chase Samsel; Eleni Elia; David W Brown; Emily Morell
Journal:  Pediatr Cardiol       Date:  2022-05-10       Impact factor: 1.838

Review 3.  Palliative Care in Pediatric Oncology and Hematopoietic Stem Cell Transplantation.

Authors:  Allison Uber; Jonathan S Ebelhar; Ashley Foster Lanzel; Anna Roche; Viviana Vidal-Anaya; Katharine E Brock
Journal:  Curr Oncol Rep       Date:  2022-01-21       Impact factor: 5.075

4.  "Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer.

Authors:  Bryan A Sisk; Megan A Keenan; Lindsay J Blazin; Erica Kaye; Justin N Baker; Jennifer W Mack; James M DuBois
Journal:  Pediatr Blood Cancer       Date:  2021-04-16       Impact factor: 3.838

Review 5.  Palliative Care in Paediatric Oncology: an Update.

Authors:  Naveen Salins; Sean Hughes; Nancy Preston
Journal:  Curr Oncol Rep       Date:  2022-01-21       Impact factor: 5.075

6.  Defining and timing of palliative opportunities in children with central nervous system tumors.

Authors:  A McCauley Massie; Jonathan Ebelhar; Kristen E Allen; Nicholas P DeGroote; Karen Wasilewski-Masker; Katharine E Brock
Journal:  Neurooncol Pract       Date:  2021-03-12
  6 in total

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