Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: “We Don’t Have Time to Waste”

Stacey Crane, Joan Haase, Susan Hickman

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents’ lived experiences of their child’s participation in a pediatric oncology P1T. Study findings were that parents’ experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents’ sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child’s P1T participation and would recommend P1Ts to other parents of children with cancer.

Original languageEnglish (US)
JournalQualitative Health Research
DOIs
StateAccepted/In press - Apr 1 2018

Fingerprint

Clinical Trials
Pediatrics
Parents
Neoplasms
Clinical Trials, Phase I
Emotions
Therapeutics

Keywords

  • participant experiences
  • pediatric oncology
  • phase I clinical trials
  • phenomenology
  • research ethics
  • United States

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

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