Development and Preliminary Evaluation of a Pain Management Manual for Hospice Providers to Support and Educate Family Caregivers

Abstract

Background: Family caregivers encounter many barriers to managing patients' pain in the home hospice setting. However, there are limited clinically applicable resources for hospice providers to help family caregivers identify and address these barriers. Aim: To develop a pain management manual for hospice providers to support family caregivers and conduct a preliminary providers' evaluation of the manual. Design and Participants: A pain management manual was developed and structured into 3 parts: (1) 5 common pain management case scenarios based on a secondary data analysis of a hospice clinical trial; (2) a list of suggested assessment questions and strategies for each case scenario was developed based on a caregiver framework; and (3) pain educational material was included from established clinical guidelines. The manual was vetted by 5 experts and then was evaluated by interviewing 25 hospice providers. Interview data were analyzed using thematic analysis. Results: The hospice providers found that the manual could potentially serve as a reference in their practice and be a source for their continuing education. They suggested enhancing the clarity of the case scenarios and adding additional strategies to the manual. Moreover, they suggested expanding the paper-based version and developing a web-based platform to deliver the content would maximize its utility. Conclusions: The manual has the potential to be integrated into routine hospice care to improve the quality of pain management.

Reflections of Hospice Staff Members About Educating Hospice Family Caregivers Through Telenovela

“…However, many hospice agencies have not developed adequate resources to prepare caregivers for symptom management. 2 While participants in our study reported little use of technology for patient/family education, they favored the use of telenovela video for family caregiver education and deliberation efforts.…”

“…Similarly, other studies have reported that the usefulness of videos depends on the preferences (printed vs web-based information) and personality of each person, 31 and the level of physical and psychological burden. 2 The telenovela evaluated in this study was developed systematically with a strong theoretical basis for future implementation in routine hospice care. Future interventions studies could consider using telenovela video as an intervention delivery tool and explore which caregiver and at what moment would be best to offer.…”

“…24 This suggests that videos can serve as a vehicle through which modifications can be made to medical treatment decisions 24 and engagement in conversations about concerns can lead to better understanding of their distresses and provide necessary education. 2…”

“…1 About 60% of the patients enrolled in hospice received care at home, a setting in which family caregivers are required to provide patients with care and symptom management, supported by regular home visits of a hospice care team. 2 Nearly one-third of family caregivers of patients receiving hospice care report they are moderately to severely anxious and/or depressed. 3 Research has shown that hospice caregivers are seeking additional information related to patient care, pain and symptom management, and self-care.…”