Paper
Thursday, July 12, 2007
Self-efficacy and role strain of parents caring for seriously ill children
Mary W. Byrne, PhD, NP, MPH, FAAN1, Elana Evan, PhD2, Lorie S. Goshin, RN, MSN1, Matthew Erlich, BS3, Jennifer L. Hsiao, BS2, Ernest R. Katz, PhD4, John M. Saroyan, MD3, and Lonnie K. Zeltzer, MD2. (1) School of Nursing, Columbia University, New York, NY, USA, (2) Department of Pediatrics; Pediatric Pain Program, UCLA Mattel Children's Hospital, Los Angeles, CA, USA, (3) Departments of Anesthesiology and Pediatrics, Columbia University Medical Center, New York, NY, USA, (4) Hematology Oncology; Behavioral Sciences, Children's Hospital Los Angeles, Los Angeles, CA, USA
| Learning Objective #1: identify components of self-efficacy for parents of children in end-of-life care |
| Learning Objective #2: describe caregiver burdens for parents of children in end-of-life care |
Parental self-efficacy has been associated with parent competence and child functioning under various parenting circumstances but has not been explored well for parents of children with life-threatening illness. These parents sustain substantial burdens as they meet the challenges of family and child care during the progression of illness especially as the child moves toward end of life when symptoms typically increase in number and complexity of management. Many parents choose to remain primary caregivers throughout this period and need self-efficacy to provide the care, comfort, and life quality their child needs and to work effectively with health care providers while also protecting their own psychological and physical resources. This study is a secondary analysis of data collected in a multi-site study of parent and child communication about symptoms in children with serious illness (L. Zeltzer, P.I.). For a subset of 33 children with serious illness enrolled in the primary study at clinical facilities affiliated with University of California Los Angeles or the Columbia University Medical Center in New York, a descriptive profile and relationships among measures of parental self-efficacy, caregiver strain, and parent moods are analyzed and discussed relative to child and parent reports of children’s predominant symptoms and symptom clusters. Instruments include the Chronic Pain Self-Efficacy Scale (CPSS), the Caregiver Strain Index (CSI), the Profile of Mood States (POMS) and the Memorial Symptoms Assessment Scale (MSAS). Instruments designed for other populations (CPSS, CSI) had satisfactory psychometrics with this sample. Parents had extraordinarily high burden scores (mean CSI 8.03 and 44%
> 10 where 8 indicates great stress) but also had relatively high average self-efficacy on a scale of 10 -100 for their child’s pain (73.9 sd 15.8 ), functioning (80.8 sd 18), and coping (73.4 sd 16.5). Wide individual variations and mood relationships suggest need to provide tailored interventions.