Paper
Sunday, November 4, 2007
332
Transitioning into the Caregiver Role: Experiences in Neuro-Oncology
Allison Hricik, MS, BS1, Heidi Donovan, PhD, RN1, Sarah Bradley, BS1, Barbara A. Given, RN, PhD, FAAN2, Catherine M. Bender, RN, PhD3, Alyssa G. Newberry1, Frank Lieberman, MD4, and Paula R. Sherwood, PhD, RN, CNRN1. (1) School of Nursing, University of Pittsburgh, Pittsburgh, PA, USA, (2) College of Nursing, Michigan State University, East Lansing, MI, USA, (3) Department of Acute and Tertiary Care, University of Pittsburgh, Pittsburgh, PA, USA, (4) Neurology, University of Pittsburgh, Pittsburgh, PA, USA
| Learning Objective #1: take a qualitative look into the lived experiences of caregivers for primary malignant brain tumor (PMBT) patients. |
| Learning Objective #2: identify the challenges and lifestyle adjustments that cause distress among PMBT caregivers. |
Purpose: Multiple studies have reported physical and emotional distress for family caregivers. However, there is a paucity of research describing the way in which this distress evolves as family members transition into the caregiver role, particularly for caregivers of persons with a primary malignant brain tumor (PMBT). The purpose of this qualitative study was to use the Pittsburgh Mind Body Center Model to examine how family members transition into the caregiver role.
Methods: Content analysis was performed on interviews conducted with 10 persons (>21 years old) identified as the primary caregiver for a person diagnosed with a PMBT within the last 3 months. Caregivers were asked a series of open ended questions allowing for detailed descriptions of the their lived experiences.
Results: Six major themes were identified – tumor-related dysfunction, role changes, support, shock/fear, enmeshment and communication. Tumor-related dysfunction represented caregiver distress resulting from physical, cognitive, and psychological changes in the care recipient. Caregivers also described strain resulting from changes in previously held social, occupational, and familial roles. Support from friends and family was perceived to offset some of the distress resulting from providing care. Enmeshment was evident as caregivers became immersed in the care situation to the point where self-needs and prior obligations became secondary or were ignored. Shock and fear represented caregivers’ emotional reaction to the care recipient’s diagnosis during the first three months. Finally, caregivers reported distress stemming from a lack of communication with health care providers.
Conclusion: Being forced to deal with both oncological and neurological issues, family members of persons with a PMBT face many lifestyle changes and adjustments as they transition into the role of caregiver. Data suggest that immediately following diagnosis, nurses may decrease caregiver distress by facilitating health care communication and providing strategies to enlist support, improve self-care, and cope with tumor-related dysfunction.