title: Development of the Palliative Care Parental Self-Efficacy Measure.
abstract: Caring for a child with a potentially fatal medical condition is a challenge for parents or caregivers. The ability to measure parental self-efficacy in pediatric palliative care may be an important component of targeting supportive services that address individual needs of families. Therefore, the goal was to develop a Pediatric Palliative Care Parental Self-Efficacy Measure (PCPEM). First, a list of questions were generated that asked parents their level of confidence in carrying out tasks involved in caring for a child with a potentially fatal medical condition in 6 palliative care domains: 1) medical discussion/decisions; 2) symptom management/medication; 3) daily activities; 4) feelings/concerns; 5) spirituality; and 6) end-of-life care. The PCPEM was narrowed to 58 questions after expert reviews. Then, 16 caregivers of children receiving palliative care services and 9 bereaved caregivers participated in individual focus interviews conducted by a psychologist to obtain feedback about the content and clarity of the PCPEM. Results indicated that 53 of the 58 questions were rated as "comfortable being asked," and 55 of the 58 questions were rated as "important" by the majority (>80%) of the 25 caregivers. This suggests that it is feasible and valuable to ask caregivers difficult questions related to end-of-life care if done in a supportive and sensitive manner. Pilot testing of the PCPEM will be conducted to determine preliminary psychometric properties.
authors.affiliation: Pediatric Hematology/Oncology/Blood and Marrow Transplant, Medical College of Wisconsin, Milwaukee, Wisconsin 53226, USA. kbingen@mcw.edu
authors.forename: Kristin
authors.initials: K
authors.lastname: Bingen
authors.forename: Mary Jo
authors.initials: MJ
authors.lastname: Kupst
authors.forename: Bruce
authors.initials: B
authors.lastname: Himelstein
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D006776:Hospitals, Pediatric; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D010166:Palliative Care; D010287:Parent-Child Relations; D016730:Program Development; D011594:Psychometrics; D020377:Self Efficacy; D014922:Wisconsin