Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation

Author:

Starr Lauren T.1ORCID,Washington Karla T.2ORCID,Jabbari JoAnn23ORCID,Benson Jacquelyn J.2,Oliver Debra Parker23ORCID,Demiris George14,Cagle John G.5

Affiliation:

1. Department of Biobehavioral Health Sciences, NewCourtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia, PA, USA

2. Washington University in St Louis School of Medicine, St Louis, MO, USA

3. Barnes-Jewish College, Goldfarb School of Nursing, St Louis, MO, USA

4. Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA

5. Center to Advance Chronic Pain Research, University of Maryland, School of Social Work, Baltimore, MD, USA

Abstract

Background Assessing and managing hospice patients’ pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. Objective To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. Methods We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. Results Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers’ concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. Conclusion A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Funder

Foundation for Barnes-Jewish Hospital

Hospice Foundation of the Ozarks

National Institute of Nursing Research

Jonas Nurse Leaders Scholars Program

Publisher

SAGE Publications

Subject

General Medicine

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