Faculty Collaboration Database

Development of the Palliative Care Parental Self-Efficacy Measure. J Palliat Med 2011 Sep;14(9):1009-16

Date

07/28/2011

Pubmed ID

21790470

DOI

10.1089/jpm.2011.0069

Scopus ID

2-s2.0-80052734687 (requires institutional sign-in at Scopus site)   6 Citations

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.

Author List

Bingen K, Kupst MJ, Himelstein B

Author

Kristin M. Bingen PhD Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Adult
Caregivers
Child
Child, Preschool
Hospitals, Pediatric
Humans
Interviews as Topic
Middle Aged
Palliative Care
Parent-Child Relations
Program Development
Psychometrics
Self Efficacy
Wisconsin