Health Communication, 28: 110–118, 2013 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2011.652935
Family Caregiver Participation in Hospice Interdisciplinary Team Meetings: How Does It Affect the Nature and Content of
Elaine Wittenberg-Lyles Markey Cancer Center and Department of Communication
University of Kentucky
Debra Parker Oliver and Robin L. Kruse Curtis W. and Ann H. Long Department of Family and Community Medicine
University of Missouri
George Demiris School of Nursing and School of Medicine
University of Washington
L. Ashley Gage School of Social Work University of Missouri
Ken Wagner Department of Communication Studies
University of North Texas
Collaboration between family caregivers and health care providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet biweekly to collaborate and develop holistic care plans that address the physical, spiritual, psychological, and social needs of patients and families. The purpose of this study was to explore team communication when video-conferencing is used to facilitate the family caregiver’s participation in a hospice team meeting. Video-recorded team meetings with and without family caregiver participation were analyzed for communication patterns using the Roter Interaction Analysis System. Standard meetings that did not include caregivers were shorter in duration and task-focused, with little participation from social workers and chaplains. Meetings that included caregivers revealed an emphasis on biomedical education and relationship-building between participants, little psychosocial counseling, and increased socioemotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.
Correspondence should be addressed to Elaine Wittenberg-Lyles, University of Kentucky, Markey Cancer Center and Department of Communication, 741 S. Limestone, B357 BBSRB, Lexington, KY 40506-0509. E-mail: Elaine.firstname.lastname@example.org
HOSPICE FAMILY CAREGIVERS 111
Hospice care is provided to both the patient and family, and includes attention to the physical, psychological, spiritual, and emotional needs of the dying and their loved ones (Centers for Medicare and Medicaid Services, 2008). Physicians, patients, families, and other health care providers agree that preparation for the end of life includes ensuring that the family is prepared for the loved one’s death (Steinhauser et al., 2001). Family members are most satisfied with hospice services when they are informed regularly and receive social support from staff (Rhodes, Mitchell, Miller, Connor, & Teno, 2008). Family members also feel satisfied with hospice services when they are informed about their loved one’s condition on a regular basis, feel that the team provides them social support, and are able to identify one nurse as being in charge of the patient’s care (Rhodes et al., 2008).
However, communication between family caregivers and providers continues to be problematic (Bowman, Rose, Radziewicz, O’Toole, & Berila, 2009). Caregivers report that they need more information, more support, and increased communication with staff (Dougherty, 2010). Bereaved caregivers of long-term care patients reported that they did not receive enough information when their loved one was dying, that they did not understand what the clin- ician had told them about what to expect, and that the physician did not always discuss the patient’s end-of-life wishes (Biola et al., 2007). Hospice providers report that communication with caregivers can be difficult due to the caregiver’s impaired concentration, the caregiver’s propen- sity to engage in silence, the caregiver’s desire not to bother clinicians, the caregiver’s rejection of support ser- vices, and timing and amount of information received dur- ing an encounter (Hudson, Aranda, & Kristjanson, 2004). Inadequacies in communication with caregivers can also result from interdisciplinary relationships among team mem- bers that emerge from turf-type issues, the inability of the team to provide a common message to the patient/family, and inefficient communication processes within the care sys- tem (Kirk, Kirk, Kuziemsky, & Wagar, 2010). This study investigated ACTIVE team meetings, when one or more family members virtually participate in team meetings, to examine how caregiver participation in interdisciplinary team meetings affected team communication with family caregivers.
INTERDISCIPLINARY TEAMS AND PATIENT-CENTERED CARE
The theoretical framework for this study combines a model for the participation of family on healthcare teams and interdisciplinary collaboration, an approach called ACTIVE: Assessing Caregivers for Team Intervention through Video Encounters (Parker Oliver, Demiris, Wittenberg-Lyles, & Porock, 2010). Similar to the input–process–output
framework detailed by Real and Poole (2011)—which considers communication structures that shape commu- nication processes and how these processes influence health care outcomes—the ACTIVE framework combines a model of interdisciplinary collaboration that includes families proposed by Saltz and Schaefer (1996) and incorporates Bronstein (2003), who identified important components to the team process that impact successful collaboration.
According to Saltz and Schaefer (1996), the model inter- disciplinary team enacts patient-centered care by includ- ing the patient and family as core members of the health care team. Team structures determine whether family mem- bers are viewed as “lay” team members (without detailed knowledge) or “specialists” (with a tremendous amount of knowledge regarding the patient). Bronstein (2003) further details team processes by providing an outline for suc- cessful collaboration between hospice staff members. The framework identifies four components to interdisciplinary collaboration processes: (1) interdependence and flexibility; (2) newly created professional activities; (3) collective own- ership of goals; and (4) reflection on process. Bronstein’s model for interdisciplinary collaboration when combined with the work of Saltz and Schaefer (1996) supports inclu- sion of patients and family, as the team will become inter- dependent with patient/family goals and will create new activities and roles for patients/families within the team, requiring flexibility among individual members’ role def- initions. The patient/family involvement will require col- lective ownership of all goals by all team members, and the care outcomes will be evaluated through a reflection on the team process, again including feedback from patients/ families.
The Role of Telemedicine in Interdisciplinary Team Communication
Telemedicine tools, such as advanced communication tech- nology, offer the potential to improve team communication and collaboration by facilitating caregiver involvement in team meetings. Attendance and participation in team meet- ings are problematic for many hospice caregivers due to the care needs of the patient, geographic distance and travel to the hospice office, confidentiality issues as people wait in the office, and the time involved for team members (Parker Oliver, Porock, Demiris, & Courtney, 2005). Consequently, family caregivers are rarely included in hospice team meet- ings. ACTIVE team meetings offer caregivers the opportu- nity to utilize video-conferencing technology to participate in hospice interdisciplinary team meetings and overcome barriers to participation.
Previous research on telemedicine interactions has included family members, but little is known about their participation. One study found that while family members participated in 48% of interactions, they contributed only
112 WITTENBERG-LYLES ET AL.
10% of talk during the interaction (Nelson, Miller, & Larson, 2010). Similarly, another study found that companions (fam- ily or friends of the patient) contributed only 7% of talk in face-to-face interactions and 9% in telemedicine inter- actions (Agha, Roter, & Schapira, 2009). The majority of talk shared by companions during telemedicine encounters involves sharing the patient’s medical symptoms and thera- peutic regimen, followed by lifestyle and psychosocial status and agreement statements (Agha et al., 2009). One reason for the low involvement of family members is that telemedicine interactions are typically structured as a dyadic encounter between the patient and a physician. Consequently, it has been suggested that telemedicine interactions are less patient-centered than in-person visits because physicians tend to dominate discussions with biomedical talk and limit exchanges about psychosocial and lifestyle issues (Agha et al., 2009).
ACTIVE meetings are unique because the caregiver is the primary spokesperson on behalf of the patient and the goal of the meeting is to collaborate rather than to provide direct patient care. The goal of this study was to investigate how family involvement influences interdisciplinary team communication. Specifically, we questioned:
RQ1: How does communication differ between standard interdisciplinary team meetings and ACTIVE team meetings?
RQ2: How do caregivers and team members engage in collaborative communication during ACTIVE team meetings?
Data for this study were drawn from a larger, ongoing randomized controlled trial that assesses caregiver clin- ical outcomes associated with participation in ACTIVE meetings. In this study, hospice family caregivers are ran- domly assigned to one of two study conditions: standard hospice care that consists of biweekly team meeting dis- cussions of the patient’s case, or the ACTIVE meeting, which involves the use of Web-based video-conferencing to enable caregivers to virtually participate in team meetings. Participants randomized to the ACTIVE meeting…
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