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Ann Morstad Boldt

Publications and source records attributed to Ann Morstad Boldt.

3 recordsLinked to original sources

Perceptions of the term palliative care.

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.

Adult↗

Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin.

Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening condition are dying, (2) agency services available to dying infants and their families, and (3) utilization of these services for infants within the state of Wisconsin. We collected information from death certificates for infants whose cause of death was either congenital anomaly or condition of the perinatal period, such as hypoxic ischemic encephalopathy or prematurity. In addition, we surveyed all hospice and home health agencies in Wisconsin to determine their ability to serve and whether they were utilized for this same population. During 1992-1996 in Wisconsin, state records indicate that 2591 infants died: congenital anomalies or conditions of the perinatal period resulted in 1538 (60%) of these deaths. Of the 508 infant deaths from congenital anomalies, 46 (9%) occurred at home. Of the 1030 deaths from conditions of the perinatal period, 16 (1.5%) occurred at home. Only 36 (40%) of the 91 hospice/home health agencies that responded to our survey provided services to the pediatric population between 1992-1996. During this time, only 11 agencies provided care for 20 infant home deaths, comprising 32% of infant home deaths reported to the state in that same time period. In comparison to adults and older children, we found a low home death rate for infants with a life-threatening condition. To clarify these findings, we discuss barriers to infant home death.

Cause of Death↗