Parents' Perceptions of a Pediatric Palliative Program

M. Joan Sheetz, Mary Ann Sontag Bowman

Research output: Contribution to journalReview articlepeer-review

Abstract

Reports of family satisfaction with pediatric palliative care have been limited. This knowledge is critical for both program development and furthering understanding of needs. The purpose of this study was to assess parents' perceptions about whether a pediatric palliative care program was providing key elements of pediatric palliative care as described in the literature and to assess parental satisfaction with services. Data were collected from 65 parents, using a tool developed for the project, whose children died while receiving services from Rainbow Kids Palliative Care, a program of Primary Children's Medical Center, and the Department of Pediatrics, University of Utah, Salt Lake City, Utah. Respondents reported that the Rainbow Kids team had provided emotional support, helped with decision making and communication, and that their children's symptoms were managed. Furthermore, parent respondents expressed high levels of satisfaction with services from the Rainbow Kids team.

Original languageEnglish
Pages (from-to)291-296
Number of pages6
JournalAmerican Journal of Hospice and Palliative Medicine
Volume30
Issue number3
DOIs
StatePublished - May 2013

Keywords

  • end-of-life care
  • family satisfaction
  • family support
  • medical decision making
  • pediatric palliative care
  • program development

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