Perceptions of the term palliative care

Abstract

Objectives: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program.

Methods: Survey conducted at three pediatric health care sites; asked respondents (parents and staff) about their likelihood to use a program identified either as palliative care or supportive care, as well as their understanding and feelings about the program before and after reading a program description.

Results: Response rate was 89% (195/220); 184 were considered evaluable. Parent respondents in the supportive care group scored significantly higher (Mann-Whitney test, p = 0.003) on "likelihood to use program" (mean score, 4.22, n = 60) than those in the palliative care group (mean score, 3.58, n = 45) before each read the program description. However, this group difference disappeared (p = 0.582) after reading the description (mean scores 4.50, 4.38, respectively; n = 48, n = 40, respectively). The name palliative care evoked more negative emotions compared to the supportive care name in parents, and reading the program description led to more positive feelings. In staff, reading the program description significantly increased likelihood to use the program for those in the Palliative Care group only (4.22 to 4.44; p < 0.05; n = 41). Staff also had more positive feelings about the program called supportive care, and rated this name best most frequently.

Conclusion: Better definition of and explanation to families and health care providers about what palliative care programs offer may improve perceptions about palliative care and increase program utilization.