‘‘Palliative Care’’: What do these words mean to parents and health care providers? Morstad Boldt, Ann MS, Children’s Hospital of Wisconsin, Milwaukee, USA, Nigh, RN, Laura, BSN , Children’s Hospital ofWisconsin,Milwaukee, USA, Himelstein, Bruce MD, Children’s Hospital of Wisconsin, Milwaukee, USA |
Despite best intentions, parents and providers may be hesitant to utilize pediatric palliative care services. Expectations of cure and hope may be in conflict with the perceptions of the need for and utility of palliative care services. To better understand the impact and perceptions of the program name, we studied parents’ and health care providers’ perceptions of the Palliative Care Program’s name and an alternative. Our hypotheses were: 1) the words ‘‘Palliative Care’’ are a barrier to program utilization; 2) use of the alternative descriptor ‘‘Supportive Care’’ will increase the hypothetical likelihood of program utilization; 3) use of a non-threatening program description will increase likelihood of program utilization. Following IRB approval and appropriate consent, we administered a short anonymous survey instrument to a convenience sample at 3 sites. The survey asked respondents to rate how likely they would be to use the program in the hypothetical instance of having a child with a life-threatening illness, their understanding of the program name, and feelings about the program before and after they read a non-threatening program description. Subjects were randomly assigned to receive packets about a program identified either as ‘‘Palliative Care’’ or ‘‘Supportive Care.’’ We administered 195 surveys with a response rate of 92%. Preliminary data indicated that Parent respondents in the Supportive Care group scored significantly higher (p = 0.003) on ‘‘likelihood to use program’’ (mean 4.22) than those in the Palliative Care group (mean 3.58) before each read the program description but that this group difference disappeared (Mann-Whitney Test, p = 0.397) after reading the description (means 4.51, 4.33, respectively). Additional data will be presented. (Suggested topic of Health Services Research).
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