Caregiver Activation and Home Hospice Nurse Communication in Advanced Cancer Care

Abstract

Background Activated patients have the skills, knowledge, and confidence to manage their care, resulting in positive outcomes such as lower hospital readmission and fewer adverse consequences due to poor communication with providers. Despite extensive evidence on patient activation, little is known about activation in the home hospice setting, when family caregivers assume more responsibility in care management. Objective We examined caregiver and nurse communication behaviors associated with caregiver activation during advanced cancer patients’ home hospice visits using a prospective observational design. Methods We adapted Street’s Activation Verbal Coding tool to caregiver communication and used qualitative thematic analysis to develop codes for nurse communications that preceded and followed each activation statement in 60 audio-recorded home hospice visits. Results Caregiver communication that reflected activation included: demonstrating knowledge regarding the patient/care, describing care strategies, expressing opinions regarding care, requesting explanations of care, expressing concern about the patient, and redirecting the conversation toward the patient. Nurses’ responded by: providing education, reassessing the patient/care environment, validating communications, clarifying care issues, updating/revising care, and making recommendations for future care. Nurses prompted caregiver activation through focused care-specific questions, open-ended questions/statements, and personal questions. Conclusions Few studies have investigated nurse/caregiver communication in home hospice and to our knowledge no other studies focused on caregiver activation. The current study provides a foundation to develop a framework of caregiver activation through enhanced communication with nurses. Implications for Practice Activated caregivers may facilitate patient-centered care through communication with nurses in home hospice thus resulting in enhanced outcomes for advanced cancer patients.

Communicating Caregivers' Challenges With Cancer Pain Management: An Analysis of Home Hospice Visits

“…This will lesson emotional and physical stress of FCGs in managing pain in home hospice. 15,16,20 Thus, hospice nurses should continue to provide in-depth information incorporating comprehensive knowledge, problem-solving skills, and self-efficacy in managing patients’ pain. Such an ongoing effort may increase FCGs’ active participation in managing cancer-pain and enhance the outcomes for cancer patients in home hospice.…”

“…Such an ongoing effort may increase FCGs’ active participation in managing cancer-pain and enhance the outcomes for cancer patients in home hospice. 15,16,20…”

“…In both reviews, 11,12 effective communication was highlighted as an important strategy for overcoming barriers in pain management. Previous qualitative studies for FCGs experiences in hospice 13–15 reported that improved communication between hospice nurses and FCGs can reduce the burden of pain management, can increase access to information, and practical and emotional support for the caregivers, and can help ease the overall burden of hospice care among FCGs.…”

Development of a communication and health literacy curriculum: Optimizing the informal cancer caregiver role

“…This conceptually broad approach encompasses the interactional processes of health communication as a communicative and interactive component of health literacy, with health literacy being the end goal of health communication . Prior research has illustrated that both concepts are relevant to the caregiving role, with demonstrated improvement following individualized caregiver education …”

Providing home hospice care for LGBTQ+ patients and caregivers: Perceptions and opinions of hospice interdisciplinary care team providers

“…Home hospice care, therefore, requires that providers possess considerable clinical and communication skills as effective communication is essential to optimal end-of-life (EOL) outcomes (Wittenberg-Lyles et al, 2012; Clayton et al, 2014; Bhatt and Mitchell, 2015; Dingley et al, 2017; Ellington et al, 2018; Back, 2020). Ideally, these skills are informed by up-to-date knowledge, standards of practice, and personal insight built upon clinical experience and critical reflection (Ferrell et al, 2015).…”