Parent perspectives of receiving early information about palliative and end-of-life care options from their child's pediatric providers

Verna L. Hendricks-Ferguson, Joan Haase

Research output: Contribution to journalReview article

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.

Original languageEnglish (US)
Pages (from-to)E22-E30
JournalCancer nursing
Volume42
Issue number4
DOIs
StatePublished - Jul 1 2019

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Terminal Care
Parents
Pediatrics
Palliative Care
Neoplasms
Hope
Communication
Child Care
Brain Neoplasms
Health Personnel
Emotions
Therapeutics
Nurses
Interviews
Physicians
Control Groups

Keywords

  • Care end-of-life care parent
  • Children with brain tumors
  • Communication
  • Palliative

ASJC Scopus subject areas

  • Oncology
  • Oncology(nursing)

Cite this

Parent perspectives of receiving early information about palliative and end-of-life care options from their child's pediatric providers. / Hendricks-Ferguson, Verna L.; Haase, Joan.

In: Cancer nursing, Vol. 42, No. 4, 01.07.2019, p. E22-E30.

Research output: Contribution to journalReview article

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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.",
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N2 - 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.

AB - 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.

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