Caregiver Activation: Cancer Communication in Home Hospice

Background: Current research demonstrates that 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 (Greene & Hibbard, 2011). In addition, studies indicate activation plays an important role throughout the course of disease management as the demands of illness change over time. 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.

Aims: We examined caregiver and nurse communication behaviors associated with caregiver activation during cancer patients’ home hospice visits. (As part of a larger study P01CA138317)

The specific aims were:

Identify and describe caregiver communication behaviors associated with caregiver activation

Identify and describe nurse communication behaviors that precede and follow activated caregiver communications

Methods: We conducted an observational, longitudinal multi-site study of hospice nurse home visits. Hospice nurses wore digital recorders to capture naturally occurring conversations in the home. We initially analyzed 20 audio-recorded visits using an adapted Street’s Activation Verbal Coding tool to hospice caregiver communication and used qualitative thematic analysis to develop codes for nurse communications that preceded and followed each activation statement. Three researchers reviewed the audio-recordings at least three times, conducted the primary coding, and met regularly to discuss the recordings. Differences in coding were typically related to semantics and not substantive issues. These differences were discussed and resolved with consensus. In addition, the inter-disciplinary research team from the larger parent study provided consultation and a broader context to the coding process and findings. Once the initial codes were developed, we extended our analysis to include a total of 60 audio-recordings.

Results:  Analysis of audio-recordings of 60 distinct nurse-caregiver-patient triads yielded a total of 3893 coded communication events. Caregivers tended to be spouses (65%), mostly female (70%) with a mean age of 59.5 (SD=14.4) and reported an average of 2.5 health problems (SD=1.3). The average age of patients was 70.2 (SD=11.12) and the most common cancer diagnoses were lung, prostate, brain, and breast.  Nurses were primarily female (91%) with a mean age of 41.4 (SD=10.36), and had been hospice case managers for an average of 4 years (SD=4.5)  Commonly used activated caregiver communication behaviors (n=1805) included: demonstrating knowledge regarding patient/care (present in 93% of tapes), describing care strategies (92%), expressing opinions regarding care (87%), requesting explanations of care (78%), and directing the conversation toward the patient (60%). Nurses’ responded by (n=1959): providing education (present in 90% of tapes), reassessing the patient/care environment (85%), validating communications (83%), clarifying care issues (83%), updating/revising care (73%), and making recommendations for future care (63%). Most common communications that preceded nurses updating/revising care were caregivers’ expressing a concern/opinion (40%) and describing care strategies (36%). Nurses prompted caregiver activation through focused care-specific questions, open-ended questions / statements, and personal questions.

Discussion: Hospice nurses are uniquely situated in the home setting, providing coordination for patient and family care as well as facilitating access to the interdisciplinary hospice care team. A recent analysis of U.S. thought leaders in hospice nursing revealed key areas of focus should include the role of communication and the importance of assessing the caregiver’s ability to provide safe and responsible care (Ellington, Cloyes, Berry, Thomas, Reblin, & Clayton, 2013). However, few studies have investigated caregiver communication in home hospice and to our knowledge no other studies focused on caregiver activation.  Activated caregivers may facilitate patient-centered care through communication with nurses in home hospice thus resulting in enhanced patient outcomes. Home-based end of life care significantly increases the responsibilities of family caregivers requiring them to face new and potentially overwhelming tasks. Often, they are required to manage complex care, perform procedures, operate medical equipment, and recognize and alleviate patient symptoms (Given, Given, & Sherwood, 2012). The current study can provide a foundation to develop a framework of caregiver activation through enhanced communication with nurses in home hospice. Future directions for research should include a longitudinal analysis to determine if caregiver activation changes over time, studies focused on the outcomes of caregiver activation and communication for patients and caregivers, exploration of hospice caregiver activation and communication in diverse populations, and the development of complimentary evidence-based education / coaching for home hospice caregivers and nurses. Transformative nursing practice focused on communication processes that facilitate caregiver activation in home hospice can potentially affect patient and caregiver outcomes in end of life care.