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

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.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care

“…All participants viewed all 4 videos, and none of the caregivers asked to stop the intervention. Previous caregiver educational interventions (eg, online modules, written materials) have reported feasibility rates of 40% to 95%, which aligns with the results generated in this study 22-24 . There was only 1 caregiver who felt the videos did not apply to her situation and therefore reported she would not recommend the videos to other caregivers.…”

“…Previous caregiver educational interventions (eg, online modules, written materials) have reported feasibility rates of 40% to 95%, which aligns with the results generated in this study. [22][23][24] There was only 1 caregiver who felt the videos did not apply to her situation and therefore reported she would not recommend the videos to other caregivers. Although the study team developed these videos based on previous themes generated from Black caregivers receiving hospice care, 9 the team understands that the 4 videos do not touch upon all the nuanced caregiving situations that families encounter in hospice care.…”

Spanish Translation and Dissemination of EMPOWER Materials to Address Barriers to Pain Management at the End of Life

“…Coupled with past evidence, 5 , 6 EMPOWER appears to be a useful, easy to use, and efficacious intervention addressing pain barriers among diverse hospice populations. For the English version, EMPOWER is poised for a large broad-based effectiveness trial.…”

“…The Effective Management of Pain by Overcoming Worries to Enable Relief (EMPOWER) approach is a promising and efficacious educational intervention that addresses these common barriers and improves outcomes for both patients and caregivers. 5 , 6 Results from a randomized clinical trial suggest that the EMPOWER approach can improve caregiver knowledge about pain management, lessen concerns about pain and pain medications, and reduce patient pain. 5 …”