Instrument Development in Pediatric Palliative Care: Measuring Parental Self-Efficacy
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Himelstein Bruce MD, Children's Hospital of Wisconsin, Milwaukee, USA, Bingen Kristin PhD, Children's Hospital of Wisconsin, Milwaukee, USA, Morstad Boldt, Ann, Children's Hospital of Wisconsin, Milwaukee, USA |
We identified parental self-efficacy as a critical new outcome measure for pediatric palliative care services. Parental self-efficacy, the level of confidence a parent feels to carry out the tasks involved in caring for a life-threatened child, was dissected into a group of elemental domains. From the areas of medical care, routine activities, psychosocial care, spirituality, and end-of-life issues, we generated a preliminary survey instrument with 112 tasks. This initial measure, the Palliative Care Parental Self-Efficacy Measure (PCPEM), was sent to several experts in self-efficacy and pediatric palliative care for evaluation. Once revised with suggestions and further discussion with team members, the PCPEM consisted of 58 task items. A research psychologist next conducted audiotaped one-on-one interviews with parents, inquiring if they felt comfortable being asked each question and if they felt the question was important. Parents were able to contribute additional content information as well. The 90-minute interview was conducted with 16 parents of patients active in the palliative care program at Children's Hospital of Wisconsin and in 9 bereaved parents of children who died in our program. Quantitative data from the interviews were analyzed by SPSS for frequencies of responses and demographics. Qualitative data were analyzed by Nudist (N6) software to determine themes, and quality and relevance of the items. Preliminary results will be presented. The final measure will be used to assess parental needs and impact of our program services. (Suggested topic development of new measurement tools).
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