Summarize the article
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
Communication?
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: [email protected]
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?
METHODS
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 (interven- tion group) are invited to participate in biweekly meetings for the duration of their loved one’s hospice care. During these team meetings, caregivers are asked whether they have any questions or concerns to share with the hospice team. In the standard care arm of the study, hospice patients are discussed at the regular biweekly interdisciplinary team meetings, but caregivers are not specifically asked to par- ticipate. The location of hospice care is unchanged for both groups. The study was approved by both the insti- tutional review board at the supporting university and the participating hospices.
Participants
Caregivers were recruited from two hospices in the Midwestern United States. To participate in the study, caregivers had to be at least 18 years of age and be the desig- nated primary caregiver for a hospice patient (as determined by hospice staff). The telemedicine component required a high-speed Internet connection with a computer to partic- ipate in the ACTIVE meeting with video. However, audio participation was available with any telephone device.
Procedure
Following referral by hospice staff, a member of the research team visited the family caregiver’s home to describe the study and obtain informed consent to participate. Once con- sent was obtained, all participating caregivers for the patient were randomized into standard care or participation in ACTIVE meetings. For those randomized to ACTIVE meet- ings, the caregivers’ residential infrastructure was assessed to determine technology needs. Caregivers with high-speed Internet and a computer were provided with an instruc- tional manual and given the website address and pass- word for the video-conferencing website. ACTIVE meetings were facilitated through Virtually InterACTIVE Families (www.vifamilies.com), a company that provides secure, encrypted, password-protected video-conferencing services. To enhance technical quality, caregivers were loaned a Web camera (webcam) and headphones to use during team meet- ing participation. Caregivers who lacked adequate technol- ogy to support video-conferencing were asked to participate via telephone. Family caregivers were provided a designated time and date to participate in each ACTIVE meeting, but were not trained on what to do or say during the video conference.
Standard team meeting discussions and ACTIVE team meeting discussions for a random selection of consent- ing caregivers were video-recorded. Standard team meet- ings were recorded using a webcam and laptop computer. To enable ACTIVE meetings in the hospice office, a web camera was connected to a laptop computer with high-speed Internet and the screen image was projected onto a televi- sion screen for the view of the entire hospice team. This connection allowed family members to have a visual image of the team as well as a two-way conversation with them. Software on the laptop video-recorded the interaction. The research team member who recorded meetings also com- pleted a seating chart of team members, identified only by their profession.
Coding Instrument
The Roter Interaction Analysis System adapted for telemedicine (RIAS-Telemed) (Miller & Nelson, 2005; Nelson et al., 2010) was used to code video-recordings of
HOSPICE FAMILY CAREGIVERS 113
standard and ACTIVE team meetings. The RIAS tool is used to study dialogue in medical interactions by treating talk, defined in terms of utterances (sentences comprising a com- plete thought), as the unit of analysis (Wakefield et al., 2008).
Using two primary categories of talk, task and socioemotional, the RIAS is used to code utterances between participants and classify utterances into a mutually exclusive category concerning the function of the talk in the inter- action. Socioemotional talk captures the affective dimen- sion of the interaction and includes social talk (nonmed- ical chitchat), positive talk (agreements, jokes), negative talk (disagreements, criticism), emotional talk (concern, empathy, reassurance), and participatory facilitators such as asking for opinion and checking for understanding. Task- focused behaviors include talk related to medical problem- solving. The specific communication features of task- focused behavior are data gathering and patient education and counseling. Task-focused talk includes question asking, information giving by the provider or the caregiver, para- phrasing, transitioning, and counseling or directing behavior. Within these functions, content areas are detailed and include biomedical and psychosocial topics. The RIAS-Telemed allows utterances that are technology specific (conversation directly related to technological aspects of the interaction) to be coded within RIAS categories. For example, partici- pants who asked a question related to technical quality (“Can you hear me, now?”) were coded as asking a closed-ended technology-related question. Finally, because the RIAS had not been used in a team setting, we added intrateam com- munication as a category to capture instances when team members spoke to each other as part of the interaction. Examples include a team member telling another team mem- ber that they would be visiting the patient on a certain day or taking responsibility for overseeing a specific care task.
Coding was conducted directly from video recordings. Using the RIAS-Telemed, three members of the research team (EWL, AG, and KW) watched video-recordings of standard hospice team meetings and ACTIVE team meet- ings and categorized utterances by all participants (team members and caregivers) into one of the RIAS-Telemed cat- egories. To ensure intercoder reliability, coders participated in six hours of training using eight team meeting discus- sions that were not included in this data analysis. Coders first independently coded three cases and then met to dis- cuss and resolve differences and refine coding categories. Next the coders independently coded five interactions and Pearson’s r reliability statistic was used to test for intercoder reliability. This resulted in an average reliability of r =.87 for all categories. Coders engaged in more discussion about differences and developed definitive coding rules for future coding. Each video-recorded team meeting in the data set was double-coded by members of the research team and all differences resolved through extended discussion. The study’s small sample size prohibited assessment of reliability statistics for specific categories.
Analysis
To compare communication differences between standard and ACTIVE meetings, the number and percentage of utter- ances in all categories were calculated (socioemotional, task-focused, technology-related). The three general RIAS categories are used to discern differences in collaborative practices between medical team members (medical directors and nurses) and nonmedical team members (social workers and chaplains). We compared the number of utterances for socioemotional and task-focused talk by each team mem- ber between the two groups using paired t-tests. Finally, to examine how caregivers and team members engage in collab- orative communication during ACTIVE meetings, the mean, range, and percentage for specific utterances and topic of utterance were calculated.
RESULTS
A total of 40 team meeting discussions (20 standard, 20 ACTIVE) comprised the data set. With the excep- tion of one ACTIVE team meeting, caregivers participated via video-conferencing (one caregiver participated via tele- phone). Table 1 provides an overview of caregiver and patient demographics for the team meeting discussions analyzed for this study. The average length of standard meeting discussion of a patient’s case was 3 minutes 38 sec- onds, ranging from 50 seconds to 6 minutes 40 seconds. Comparatively, the average length of the ACTIVE meet- ings was 9 minutes, ranging from 4 minutes to 19 minutes. There were 385 utterances in standard team meetings and 1,186 utterances in ACTIVE team meetings, reflecting the difference in meeting length. To explore communication differences between standard and ACTIVE team meetings (research question 1), we examined utterances by partic- ipant (team member’s discipline, caregiver) and by the two primary types of talk identified by the RIAS (task and socioemotional). The total utterances for each meet- ing type by participant categories and talk are shown in Table 2.
Standard and ACTIVE team meeting discussions were predominantly task focused (89% of talk in standard, 54% of talk in ACTIVE), with more socioemotional talk clearly occurring during ACTIVE meetings (32% of talk compared to 11% in standard meetings). Social workers and chaplains did not contribute socioemotional talk during standard team meetings, yet 32% of social worker talk and 50% of chaplain talk focused on socioemotional issues during ACTIVE meet- ings. Nurses also devoted more socioemotional talk (28% of talk) in ACTIVE meetings compared to standard meet- ings (10%). Medical directors exhibited little change in talk between meeting types. In ACTIVE meetings, only 13.7% of talk related to the use of technology.
114 WITTENBERG-LYLES ET AL.
TABLE 1 Summary demographic variables for patients and caregivers
Variable Caregiver (n = 25) Patient (n = 23) Diagnosis Not applicable
Cancer 17% (4) Dementia 13% (3) Other 69% (16)
Patient residency Not applicable Home 48% (11) Nursing home 52% (12) Mean age 59.2 years (range 35–81) 85.5 years (range 64–96)
Sex Female 80% (20) 78% (18) Male 20% (5) 21% (5)
Race White/Caucasian 84% (21) 83% (19) Black/African-American 16% (4) 17% (4)
Education Less than high school 8% (2) Not captured High school 24% (6) Some college 28% (7) Undergraduate college degree
16% (4)
Graduate/professional degree
24% (6)
Caregiver employment Not employed 8% (2) Part-time 20% (5) Full-time 28% (7) Other 8% (2) Retired 36% (9)
Relationship to patient Spouse/partner 12% (3) Adult child 64% (16) Sibling 4% (1) Other relative 20% (5)
TABLE 2 Summary table of utterances by participants and by meeting type (n, %)
Standard meeting, type of talk Active meeting, Type of Talk
Team Members Socioemotional Task-Focused Total Socioemotional Task-Focused Technology-Related Total
Medical directors
20 (12%) 144 (88%) 164 (43%) 11 (13%) 73 (85%) 2 (2%) 86 (7%)
Nurses 16 (10%) 140 (90%) 156 (41%) 101 (28%) 236 (67%) 17 (5%) 354 (30%) Social workers 0 15 (100%) 15 (4%) 29 (32%) 55 (60%) 7 (8%) 91 (8%) Chaplains 0 6 (100%) 6 (1%) 17 (50%) 16 (47%) 1 (3%) 34 (3%) Othera 6 (14%) 38 (84%) 44 (11%) 39 (28%) 39 (28%) 60 (43%) 138 (12%) Caregivers 185 (38%) 222 (46%) 76 (16%) 483 (41%) Total 42 (11%) 343 (89%) 385 (100%) 382 (32%) 641 (54%) 163 (14%) 1, 186 (100%)
aHospice director/administrator and research personnel who were responsible for facilitating use of the technology.
There was a noticeable change in contribution among participants between standard and ACTIVE team meet- ings. Social workers and chaplains were less verbally active in standard team meetings, contributing only 5% of
talk in these discussions and contributing only task-related talk. However, their overall contribution to team meeting discussions doubled in ACTIVE meetings to 11% of total talk. In contrast, nurses talked less overall (41% of all
HOSPICE FAMILY CAREGIVERS 115
utterances in standard; 30% of all utterances in ACTIVE). The biggest decrease in contribution came from medical directors, who went from 43% of total talk in standard meet- ings to 7% of all talk during ACTIVE meetings. Caregivers clearly dominated ACTIVE meetings with 483 utterances (41% of all talk).
The between-group difference in mean number of socioemotional and task-related utterances differed sig- nificantly for some team members (Table 3). Mean socioemotional utterances were higher in ACTIVE meet- ings for nurses (p = .001), social workers (p < .001), and chaplains (p = .005), but not for physicians or other partici- pants. Mean task-related utterances were higher in ACTIVE meetings for social workers (p = .009) but not for other team members.
Communication between interdisciplinary team members and family caregivers during ACTIVE meetings (research
question two) is summarized in Table 4. Physicians and nurses engaged in more biomedical education than social workers and chaplains, with nurses substantially domi- nating caregiver education (an average of 4.45 utterances per encounter). Social workers provided considerably more psychosocial counseling, although psychosocial counseling to caregivers was limited overall. Nurses asked the most questions, with the majority of questions devoted to biomed- ical rather than psychosocial topics. Nurses also dominated rapport-building by engaging in emotional talk and positive talk (e.g., complimenting the work of the caregiver), while social workers and chaplains provided some emotional talk. Medical directors engaged in little rapport-building with caregivers compared to other team members. All team mem- bers, with the exception of chaplains (0%), devoted 4% of talk to partnering with caregivers by asking for their opin- ion, understanding, or paraphrasing discussion. Procedural
TABLE 3 Comparison of utterances of socioemotional or task-related talk between ACTIVE and standard
meetings, by type of team member [mean (95% confidence interval)]
Team Member Type of Talk ACTIVE meeting Standard Meeting p Valuea
RN Socioemotional 5.05 (3.14–6.96) 0.8 (0.29–1.31) .001 Task-related 11.8 (9.63–14.0) 7.0 (3.26–10.74) .08
Social worker Socioemotional 1.45 (0.84–2.06) 0.0 <.001 Task-related 2.75 (1.68–3.82) 0.75 (0.12–1.38) .009
Chaplain Socioemotional 0.85 (0.33–1.37) 0.0 .005 Task-related 0.80 (0.34–1.26) 0.3 (–0.05 to 0.65) .154
Physician Socioemotional 0.55 (0.09–1.01) 1.0 (0.08–1.92) .446 Task-related 3.65 (1.15–6.15) 7.2 (2.43–11.97) .223
Other Socioemotional 1.95 (0.31–3.59) 0.3 (–0.02 to 0.62) .065 Task-related 1.95 (0.10–3.80) 1.9 (1.05–2.75) .961
aPaired t-tests between ACTIVE and standard meetings, by team member and type of communication. Utterances by caregivers and technology-related utterances are not included.
TABLE 4 Communication categories of utterances used by hospice interdisciplinary team members and family caregivers during ACTIVE meetings
Team member
Medical Directors Nurses Social Workers Chaplains Caregivers
RIAS category M R % M R % M R % M R % M R %
Education and counseling 24% 29% 47.5% 33% 38% Biomedical .7 0–5 4.45 0–9 .6 0–4 .15 0–2 6.05 2–16 Psychosocial .25 0–3 .35 0–1 1.3 0–4 .40 0–2 1.7 0–7
Data gathering 11% 23% 9% 12% 11% Biomedical .25 0–4 3.35 0–8 .1 0–1 .05 0–1 1.55 0–6 Psychosocial .2 0–3 .4 0–1 .25 0–2 .15 0–1 .75 0–2
Building a relationship 14% 29% 36% 52% 45% Social .1 0–1 1.6 0–5 .5 0–3 .4 0–2 2.7 1–6 Positive .1 0–2 1.25 0–4 .5 0–3 .15 0–1 5.15 1–11 Emotional .35 0–3 1.9 0–11 .45 0–2 .3 0–2 1.25 0–6 Negative 0 0 0 0 0 0 0 0 .15 0–3
Partnering .15 0–3 4% .8 0–4 4% .15 0–2 4% 0 0 0 .3 0–1 2% Procedural .15 0–3 4% .75 0–3 4.5% .05 0–1 1% 0 0 0 .2 0–2 1% Intrateam communication 1.7 0–10 43% 1.75 0–8 10.5% .1 0–1 2.5% .05 0–1 3% n/a n/a n/a Request for service n/a n/a n/a n/a n/a n/a n/a n/a n/a n/a n/a n/a .55 0–4 3%
Note. M = mean, R = range. Team member totals do not include uninterpretable utterances, utterances related to technology, and utterances made by research staff and hospice administrators (n = 255). Caregiver totals do not include uninterpretable utterances and utterances related to technology (n = 76).
116 WITTENBERG-LYLES ET AL.
communication was also minimal and did not include con- tributions by chaplains. Finally, medical directors and nurses engaged in substantially more intrateam communication than social workers and chaplains.
Similar to the team’s profile, biomedical education dom- inated caregiver talk, with 3.5 times more biomedical dis- closure occurring than psychosocial. Caregivers were also twice as likely to ask questions about biomedical concerns compared to psychosocial topics. Caregivers predominantly worked to build a relationship with the health care team (45% of all talk). Positive and social talk were substantially higher than negative and emotional talk, corresponding with find- ings regarding the team’s rapport-building profile, and illus- trate acknowledgment of the team’s comments. Interestingly, only 3% of caregiver talk was a request for service.
DISCUSSION
Family involvement in team meetings created a new pro- fessional role for nurses, who emerged as informal lead- ers. Although physicians have long been considered the hierarchical figure in health care teams, hospice services are largely nurse-driven, and this study illustrates nurses’ dominant role in hospice care. The large number of utter- ances between medical directors and nurses suggests that hospice nurses negotiate the role of subordinate-yet-equal team members during standard team meetings, supporting earlier work on nurse–physician relationships (Apker, Propp, & Ford, 2005). Given that task talk was the focus of stan- dard hospice team meetings, it was not surprising that the biomedical focus of ACTIVE meetings was influenced by nurses, who asked the most questions and provided the most education and counseling on biomedical topics.
Hospice medical directors talked much less during ACTIVE team meetings than during standard meet- ings, neglecting the opportunity for rapport-building with caregivers and instead opting to focus more on intrateam communication. Unlike nurses, hospice medical directors typically do not make home visits or assume the role of the attending physician and thus do not develop relationships with caregivers. The high presence of intrateam communi- cation by medical directors illustrates that family involve- ment enhances team member interdependence and flexibility. By engaging in intrateam communication, medical directors accommodate the nurse’s hierarchical position by maintain- ing autonomy and contributing to patient or team goals as peers rather then as leaders (Apker, Propp, & Ford, 2005). With new regulations now requiring face-to-face visits by medical directors, more attention will need to be paid to a visit’s impact on family caregiver communication, care planning, and caregiver satisfaction.
While family involvement removes the supportive nature of the nurse’s role in the medical director–nurse relation- ship, it also enacts the nurse’s position as superior to other
lower status team members (Apker, Propp, & Ford, 2005). Hospice social workers and chaplains spoke considerably less than nurses and medical directors did in both standard and ACTIVE meetings. The lack of participation among these nonmedical team members reveals a lack of collective ownership of goals. However, family involvement increased participation from social workers and chaplains who con- tributed socioemotional talk. Although collaboration among hospice team members commonly occurs outside of team meetings, social workers had higher task-related talk in ACTIVE meetings. Although limited, contribution among all team members as well as caregivers during ACTIVE meetings suggests collective ownership of goals among all parties.
The organizational context and team structure influenced communication between caregivers and team members. Caregivers were invited to participate in already scheduled, predetermined team meeting discussions. Caregivers did not have flexibility regarding team meeting day, time or duration. Consequently, ACTIVE meetings were similar to physician– patient interactions, as caregivers and team members were mutually influenced by one another and primarily engaged in positive and social talk to facilitate the interaction. While this resulted in an increase in socioemotional talk compared to standard meetings, it is important to note that this was primarily due to social etiquette and limited to greetings. Caregiver positive talk was five times more likely than emo- tional talk, revealing that socioemotional talk overall was still restricted.
Appropriate introductions of all team members were pro- vided to family caregivers in order to reduce anxiety and increase understanding. However, there were often team members on call for other team members, and caregivers were not always clear on the roles of team members (i.e., specific disciplines). It may be helpful to provide caregivers with a handout about their role in hospice care in terms of the team structure and a template of participating team mem- bers. Anecdotally, when caregivers were asked if they had any concerns, many reported that there were no concerns but they worried about the patient. More work needs to be done to determine concrete caregiver task needs from emotional support needs.
Important implications for how team meeting commu- nication impacts care outcomes should be noted from the study results. In hospice care, the team’s reflection on out- comes should emphasize holistic pain control (physical, psychological, social, spiritual) and caregiver bereavement and satisfaction. Previous work has found that hospice interdisciplinary teams engage in little collaboration dur- ing care planning discussions and there are deficiencies in information sharing between team members (Demiris, Washington, Parker Oliver, & Wittenberg-Lyles, 2008). Standard team meetings in this study predominantly con- sisted of medical directors and nurses talking about the patient’s case; the absence of contribution by social workers
HOSPICE FAMILY CAREGIVERS 117
and chaplains provides further evidence for collaboration deficiencies. Holistic pain control cannot be accomplished if nonmedical and medical team members do not contribute equally during team meetings and if socioemotional aspects of care are not addressed during care planning.
With few tele-health interventions specifically designed for hospice care, this study has several implications for telemedicine delivery (Demiris, Parker Oliver, & Wittenberg-Lyles, 2011). First, the study shows that the use of technology among a variety of hospice end users, includ- ing different professional disciplines and family caregivers, is feasible. The diffusion of technological tools in hospice care is impacted by challenges such as user acceptance and privacy. The low use of technology-related categories in this study was congruent with other telemedicine research using the RIAS instrument (Nelson et al., 2010), and caregivers in this study demonstrate technological utilization among fam- ily caregivers. More importantly, this study extends the use and function of technology in hospice care as a communica- tion tool rather then a tool to deliver one time primary care. Our findings demonstrate that a video-conferencing platform can facilitate the virtual participation of caregivers, allowing them to communicate with all team members and engage in meaningful conversations.
Second, staff members who use tele-health technology need to learn how to practice patient-centered commu- nication via video-conferencing (Wakefield et al., 2008). Congruent with similar investigations of telemedicine inter- actions, hospice team members had the most utterances and directed the conversation (Nelson et al., 2010). In par- ticular, nurses played a dominant role in ACTIVE meet- ings. Prior research has found that nurses are more likely to ask open-ended questions, communicate listening, and make jokes on the telephone when compared to video- mediated interactions (Wakefield et al., 2008). More research is needed to train team members to elicit caregiver participa- tion and engage in patient-centered communication during telemedicine encounters.
Limitations
Communication patterns found in this study may be unique to the hospice setting. Federally required team meetings sus- tain an exclusive context for collaborative care planning. A limitation of this study is that care planning discussions for all patients were not captured; video-recordings of team meetings only occurred for discussions about patients who provided consent for the study. As a result, some team talk could not be included for study analysis. Additionally, study results could have benefitted from further examina- tion of specific team documentation about care planning. Care planning discussions are recorded in patient medical charts and a comparison between the team’s perceived col- laboration, and actual occurrences might have revealed the team’s perceptions of the caregivers and whether or not
caregiver involvement impacted care planning documenta- tion. Finally, the number of team members varied between the participating hospice agencies and this study did not take into account the size of the hospice team involved in ACTIVE meetings. Larger groups might have influenced the caregiver’s willingness and ability to participate in ACTIVE meetings. Although this study is limited by a small sample size of limited diversity, it provides insight on caregiver– clinician interaction and raises questions about hospice team meetings.
ACKNOWLEDGMENTS
This project was supported by award R01NR011472 from the National Institute of Nursing Research. The content is solely the responsibility of the authors and does not neces- sarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health.
REFERENCES
Agha, Z., Roter, D. L., & Schapira, R. M. (2009). An evaluation of patient– physician communication style during telemedicine consultations. Journal of Medical Internet Research, 11, e36. doi: 10.2196/jmir.1193
Apker, J., Propp, K. M., & Ford, W. S. Z. (2005). Negotiating status and identity tensions in healthcare team interactions: An exploration of nurse role dialectics. Journal of Applied Communication Research, 33, 93–115.
Biola, H., Sloane, P. D., Williams, C. S., Daaleman, T. P., Williams, S. W., & Zimmerman, S. (2007). Physician communication with family caregivers of long-term care residents at the end of life. Journal of the American Geriatrics Society, 55, 846–856. doi: 10.1111/j.1532-5415.2007.01179.x
Bowman, K. F., Rose, J. H., Radziewicz, R. M., O’Toole, E. E., & Berila, R. A. (2009). Family caregiver engagement in a coping and commu- nication support intervention tailored to advanced cancer patients and families. Cancer Nursing, 32, 73–81.
Bronstein, L. R. (2003). A model for interdisciplinary collaboration. Social Work, 48, 297–306.
Centers for Medicare and Medicaid Services. (2008). 42 CFR § 418, Medicare and Medicaid programs: Hospice conditions of participation. Available at: edocket.access.gpo.gov/2008/pdf/08-1305.pdf
Demiris, G., Parker Oliver, D., & Wittenberg-Lyles, E. (2011). Technologies to support end-of-life care. Seminars in Oncology Nursing, 27, 211–217. doi: 10.1016/j.soncn.2011.04.006S0749-2081(11)00034-9 [pii]
Demiris, G., Washington, K., Parker Oliver, D., & Wittenberg-Lyles, E. (2008). A study of information flow in hospice interdisciplinary team meetings. Journal of Interprofessional Care, 22, 621–629. doi: 905514735 [pii]10.1080/13561820802380027
Dougherty, M. (2010). Assessment of patient and family needs dur- ing an inpatient oncology experience. Clinical Journal of Oncology Nursing, 14, 301–306. doi: 442Q5UU012819673 [pii]10.1188/10.CJON. 301-306
Hudson, P., Aranda, S., & Kristjanson, L. J. (2004). Meeting the support- ive needs of family caregivers in palliative care: Challenges for health professionals. Journal of Palliative Medicine, 7, 19–25.
Kirk, I., Kirk, P., Kuziemsky, C., & Wagar, L. (2010). Perspectives of Vancouver Island Hospice Palliative Care Team members on barriers to communication at the end of life. Journal of Hospice & Palliative Nursing, 12, 59–68.
118 WITTENBERG-LYLES ET AL.
Miller, E. A., & Nelson, E. L. (2005). Modifying the Roter interaction anal- ysis system to study provider–patient communication in telemedicine: Promises, pitfalls, insights, and recommendations. Telemedicine Journal and E-Health, 11, 44–55. doi: 10.1089/tmj.2005.11.44
Nelson, E. L., Miller, E. A., & Larson, K. A. (2010). Reliability asso- ciated with the Roter interaction analysis system (RIAS) adapted for the telemedicine context. Patient Education and Counseling, 78, 72–78. doi: 10.1016/j.pec.2009.04.003
Parker Oliver, D., Demiris, G., Wittenberg-Lyles, E., & Porock, D. (2010). The use of videophones for patient and family participation in hospice interdisciplinary team meetings: A promising approach. European Journal of Cancer Care, 19, 729–735. doi: 10.1111/j.1365- 2354.2009.01142.xECC1142 [pii]
Parker Oliver, D., Porock, D., Demiris, G., & Courtney, K. (2005). Patient and family involvement in hospice interdisciplinary teams. Journal of Palliative Care, 21, 270–276.
Real, K., & Poole, M. S. (2011). Health care teams: Communication and effectiveness. In T. Thompson, R. Parrott, & J. Nussbaum (Eds.), The
Routledge handbook of health communication (2nd ed., pp. 100–116). New York: Routledge.
Rhodes, R. L., Mitchell, S. L., Miller, S. C., Connor, S. R., & Teno, J. M. (2008). Bereaved family members’ evaluation of hospice care: What factors influence overall satisfaction with services? Journal of Pain & Symptom Management, 35, 365–371. doi: S0885-3924(08)00007-9 [pii]10.1016/j.jpainsymman.2007.12.004
Saltz, C. C., & Schaefer, T. (1996). Interdisciplinary teams in health care: Integration of family caregivers. Social Work in Health Care, 22, 59–69.
Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., Grambow, S., Parker, J., & Tulsky, J. A. (2001). Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. Journal of Pain and Symptom Management, 22, 727–737.
Wakefield, B. J., Bylund, C. L., Holman, J. E., Ray, A., Scherubel, M., Kienzle, M. G., & Rosenthal, G. E. (2008). Nurse and patient com- munication profiles in a home-based telehealth intervention for heart failure management. Patient Education and Counseling, 71, 285–292. doi: 10.1016/j.pec.2008.01.006
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