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A Seat at the Table: The Positioning of Families During Care Conferences in Nursing Homes

A Seat at the Table: The Positioning of Families During Care Conferences in Nursing Homes Abstract Background and Objectives Current nursing home policy emphasizes the need for collaborative, team-based care planning in which families and/or residents are actively involved. Resident care conferences are common where care providers, families, and/or residents discuss and coordinate resident care needs and evaluate care goals. This study critically examines the process, structure, and content of care conferences to expand our understanding of how resident care is negotiated among care providers and families in this context. Research Design and Methods This study was part of a larger critical ethnography examining the negotiation of care work among care providers, families, and residents in three purposively selected nursing homes in British Columbia, Canada. Thirty-seven care conferences were observed. Field notes and interview data were thematically analyzed with a focus on what was said, who said what and to whom, whose voice was privileged, and how power manifested between care providers, families, and/or residents. Results As illustrated by three key themes, Exclusion by Process—Following Script, Exclusion by Content—Scripted Reports, and Exclusion through Devalued Knowledge, families were overtly and covertly excluded from contributing to the care conferences. As such, families’ presence did not guarantee open communication or active solicitation of their perspectives. Discussion and Implications The use of predetermined agendas and processes, clinically generic reporting, and technical jargon reproduced the structural inequality between care providers and families making collaboration difficult to effectively negotiate. For care conferences to meaningfully contribute to person-centered care, it is imperative that mutual exchange be promoted and families empowered to participate as equals. Person-centered care, Interdisciplinary team meetings, Critical ethnography Current health care policy in nursing homes emphasizes the need for collaborative, team-based approaches to person-centered care provision, and greater need for the inclusion of residents and/or their families in planning resident care (Edvardsson et al., 2016; Puurveen, Baumbusch, & Gandhi, 2018). In nursing homes, care conferences (also known as case conferences, inter- or multidisciplinary team meetings), bring together health care providers, the resident, and the resident’s family to discuss the resident’s goals of care, preferences, and health status and agree on a person-centered care plan (Phillips, West, Davidson, & Agar, 2013; Reuther et al., 2012). Although some care conferences might target a specific care need (e.g., responsive behaviors in dementia), others are structured more generally to address residents’ day-to-day needs and experiences with care decisions made to support residents’ physical, social, emotional, and spiritual well-being. Care conferences can therefore be seen as a discursive space through which resident care is negotiated among care providers, family, and residents (Dijkstra, 2007; Palm, Trutschel, Simon, Bartholomeyczik, & Holle, 2016). This infers that there is an exchange of information, dialogue, and problem-solving between participants, and that family and residents are empowered to make decisions related to resident care. In the United States, federal regulations of Medicare and Medicaid-registered nursing homes have explicitly identified residents, their family, and direct care providers as central to the care team that decides the goals and outcomes of resident care (Albert, 2016; Centers for Medicare and Medicaid Services (CMS), 2016). Likewise, in the province of British Columbia (BC), Canada, nursing home operators are required, by law, to develop a resident care plan with the participation of the resident and/or a family member that addresses the full spectrum of resident well-being, and is reviewed at least annually (Government of British Columbia, 2009, Part 6, Division 1, 81). Although neither the CMS nor BC’s provincial regulations specify that care conferences serve as a platform for reviewing/modifying the care plan, they appear taken up in this manner (Albert, 2016). Such regulations assume that family, residents, and direct care staff are actively involved in care planning, yet previous research suggests this is not necessarily the reality. Residents are often unaware they are allowed to participate in care conferences (Scales et al., 2017), and resident care aides (RCAs; unregulated workers also known as nursing assistants, health care aides, personal support workers) do not have the time or permission to participate (Caspar, Ratner, Phinney, & MacKinnon, 2016; Scales et al., 2017). Although families want to be involved in decision making regarding their relative’s care, they too have limited formal and informal occasions to do so (Baumbusch & Phinney, 2014; Bern-Klug & Forbes-Thompson, 2008), including participating in care conferences (Scales et al., 2017). Literature Review Research investigating how care is negotiated in care conferences is sparse, with the majority of studies oriented toward investigating care conferences as an intervention versus research into care conferences as routine practice. This research highlights significant issues related to both the content and process, including the involvement of key stakeholders. Halcomb, Shepherd, and Griffiths (2009) explored staffs’, physicians’, families’, and residents’ understanding and perceptions of care conferences in two Australian nursing homes. Results demonstrated that participants expressed confusion over the purpose of the conferences and their own (and others’) role. The researchers observed that disciplines appeared to work in isolation from each other, which pointed to a wider issue of a lack of a collaborative culture in the nursing homes. Dijkstra (2007) conducted systematic observations of four care meetings and interviewed family and staff to specifically examine families’ role and input in conference discussions. Their input primarily involved answering staff questions, and rarely did families pose questions to staff. Further, staff statements were primarily task-oriented and did not address social and emotional needs. Families indicated that although the meetings met their expectations and they felt included, they often did not understand staffs’ language or have the courage to ask for clarification. Some families also questioned the degree to which the agreed-upon plan of care would be implemented. Further understanding of care conference processes can be derived from research examining the implementation of conferences as an intervention to manage responsive behaviors in dementia (Crotty et al., 2004; Holle, Kruger, Halek, Sirsch, & Bartholomeyczik, 2014; Reuther et al., 2012) or improve end-of-life care (Luckett et al., 2017; Parker et al., 2016; Phillips et al., 2013; Reuther et al., 2012). Successful care conferences can be attributed to a skilled facilitator to help keep the conversation on topic and conflict to a minimum (Holle et al., 2014; Luckett et al., 2017). A practiced moderator can also improve family–staff communication, promote greater family involvement in decision making, and, through the exchange of valuable resident information, promote a more person-centered care approach (Luckett et al., 2017). However, the success of the care conference is also linked to the organization’s commitment to staff attendance, training a facilitator, and promoting collaborative relationships between care providers and families (Holle et al., 2014; Luckett et al., 2017). Although such research provides insight into the care conference process, it casts doubt on the active participation and empowerment of families in decision making, and the effectiveness of conferences for collaborative care planning. This article, which is from a larger study about the negotiation of care work among families, residents, and staff in nursing homes, seeks to expand our understanding of meaningful family involvement in care conferences. It critically examines how resident care is negotiated among health care providers and family in the care conference context, including whose knowledge is privileged with respect to resident care and how that knowledge is privileged. Design and Methods Critical Ethnography The method of inquiry for this study was critical ethnography, which analyzes the influence of sociopolitical, historical, and economic factors in relation to everyday experiences (Madison, 2012). Through questions that seek to answer “why” and “what can be done,” critical ethnography shifts the researcher’s focus from describing individuals and groups to challenging the status quo and dominant power structures (Madison, 2012). In relation to care conferences, a critical ethnographic approach helps examine nursing home routines and practices by attending to group process “embedded within an organization’s history, culture, and structure” (Barge & Keyton, 1994, p. 85). A critical lens thus recognizes that social factors, including knowledge and/or power differentials, are salient to the negotiation of care between social actors (e.g., family, nurses, and physicians) within the care conference context. It also illuminates the social structures that characterize the division of labor and the structural inequalities among care providers and families, where one social group may be privileged over another. Setting and Participant Recruitment This study was conducted as part of a larger project examining the negotiation of care work among families, residents, and care providers in three purposively selected nursing homes in BC, Canada. All of the study sites were publicly funded and differed in terms of size, ownership, and location. Site 1 was an urban, 50-bed facility, owned and operated by the local health authority. Site 2 was a suburban, 70-bed, not-for-profit facility, and Site 3 was a rural, 150-bed, for-profit facility. Following University and Health Authority ethics approval, participants (family, resident, and care staff) were recruited through a variety of strategies: letters of information were mailed to all residents’ primary family contact; presentations were made at family council meetings; and project brochures were distributed to staff. Written informed consent was solicited from all participants. Table 1 highlights care conference participant details. Table 1. Care Conference Details by Site Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 aNot applicable: care staff designation not present at site. bTo maintain site anonymity, allied health staff includes dietician, pharmacist, social worker, physiotherapy, occupational therapy, pastoral care, and/or recreation staff. Open in new tab Table 1. Care Conference Details by Site Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 aNot applicable: care staff designation not present at site. bTo maintain site anonymity, allied health staff includes dietician, pharmacist, social worker, physiotherapy, occupational therapy, pastoral care, and/or recreation staff. Open in new tab Data Collection Between January 2016 and June 2017, 37 care conferences across the three sites were observed by trained research assistants and the second author. Field notes—documented during the conferences—captured the primary topics and content of the conversation, gestures, conversation flow, and patterns of interaction (Gubrium, 1980). In some circumstances, the researchers had informal conversations with family and care providers following the care conference. Additional information came from interview data from the larger study in which family (n = 37) and staff (n = 35) were asked about their involvement in care decisions, including involvement in care conferences. Data Analysis Data analysis occurred concurrently with data collection to allow for an inductive-deductive, multistep process (Braun & Clarke, 2006). Data management and organization were facilitated by NVivo 11 software. For this article, analyses focused on family (rather than individual resident) participation in care conferences. Guided by the research questions, during multiple, line-by-line readings of the data, we focused on describing the data: what was said; who said what and to whom; whose voice was privileged, silenced, and/or missing; and how power manifested between care providers and family. Initial codes were categorized, compared, and contrasted across data sources resulting in the development of key themes. Emerging codes and themes were then analyzed in relation to potential underlying assumptions and ideologies of the broader nursing home culture and organizational environment, including issues of structural power and human agency. Regular data-analysis meetings provided opportunity for collective analysis. All identifiers to name and place have been removed to protect participant’s privacy. To that end, family members are identified by the prefix FM, and staff by SO. Rigor Trustworthiness of data collection and analysis was supported through prolonged engagement at the study sites, analysis of reflexive field notes written following observations and interviews, peer debriefing, and creation of an audit trail (i.e., a research log documenting decisions, activities, and insights; Onwuegbuzie & Leech, 2007). Throughout the research process, there was ongoing reflexive dialogue between the researchers that gave careful attention to our own social positioning, biases, and assumptions in relation to the research questions. Credibility and confirmability were established through data triangulation (i.e., the use of multiple methods and sources), having multiple team members code data and compare analytic notes, and sharing emerging findings with study sites (Lincoln & Guba, 1985). The rich description of study context, participants, and methods allows readers to determine the transferability of findings to other nursing home settings (Lincoln & Guba, 1985). Findings Context and Description of Resident Care Conferences At all sites, care conferences were formally scheduled on a weekly basis, with initial conferences occurring 6 weeks postadmission and, in keeping with provincial regulations, annually thereafter. Families and residents were not involved in the scheduling, but rather notified of the date/time of the conference and simply invited to attend. Only Site 1 offered families an information pamphlet outlining the care conference process and expectations. Considerable variation existed, both across conferences and sites, in terms of duration and attendance (see Table 1). At Site 1, the 12 observed conferences ranged in length from 20 to 70 min (mean duration: 42 min), although initial conferences tended to last slightly longer. Although only two residents attended their respective conferences, all but two conferences were attended by family. Unlike the other sites, RCAs attended the first 10–15 min of the conference. At Site 2, the 13 conferences lasted from 5 to 45 min (mean: 20 min). Compared to the other sites, fewer conferences were attended by family, yet four residents attended their own conferences. RCAs were not present; however, a contract care manager, who represented the RCAs, attended on their behalf. At Site 3, the 12 observed conferences ranged from 13 to 34 min (mean: 27 min). Again, although only 2 conferences were attended by residents, 11 conferences were attended by families (5 of which were attended by two family members). In the absence of a facility medical director, the resident’s own physician participated in the conference. No RCAs attended the conferences. Thematic Findings The main themes of this study reflect three key ways in which family members were systematically excluded from contributing to resident care conferences. These themes are discussed later: (a) Exclusion by Process: Following Script, (b) Exclusion by Content: Scripted Reports, and (c) Exclusion through Devaluing Knowledge. Exclusion by Process: Following Script The scripted process of care conferences contributed to families being excluded from making meaningful contributions. This was manifested through (a) a predetermined agenda; (b) a predetermined ordering of business; and (c) ambiguous beginnings and endings. A Predetermined Agenda Despite the absence of an explicit written agenda at the care conferences for all three sites, a predetermined agenda appeared to exist. Staff members came to the conference prepared with reports and documentation on residents to be discussed, and in one site, the team met before the care conference to discuss emergent care issues and decide which issues to share with family members and residents. Although these preconference preparations enabled care providers to prepare for the impending discussion, it also predetermined an agenda to which the family was not privy nor invited to contribute. In one case, a family member’s desire for an agenda was met with complacency and indifference: I said, “Well there should be an agenda. If there was an agenda, we’d have that in advance, everyone would know how long it was going to be and what the topics were going to be and who has a chance to say what and how much time was given.” And they [care providers] just looked at each other and it was like [she shrugs her shoulders]. [Interview: S3, FM0317] Similarly, families’ attempts to contribute to the agenda at the start of the conference were often deflected, reframed to be addressed on staff’s terms (e.g., in the context of a formal report), or, as in the field note later, ignored. This care conference is being held over the phone. When it starts, not everyone is present. The Director of Care suggests it would be good to go over some of the medical issues now, before the resident arrives. The daughter pipes up over the speaker phone, “actually, my concerns are more around quality of life, and I know it’s the same for my mum [the resident]”. “OK” says the Director of Care. She continues, “R03-21 was admitted April 16, 2017. What’s her age, FM0321?” “She’s 68” replies FM0321. The Director of Care continues, “her admission weight was . . . , her current weight is . . . , her current diagnosis is dementia.” [Fieldnote: S3, 05.25.2017] In keeping to this predetermined agenda, family and resident concerns remained unaddressed. Consequently, many families did not know what to expect, were unsure about what they were allowed to contribute, or questioned whether their own goals for the conference would be addressed or superseded by the team’s agenda. As FM0126 succinctly expressed, “[Staff] don’t really want to work towards your goals because they have their own in place” [Interview: S1, FM0126]. A Predetermined Ordering of Business The care conference process also reflected an unsaid order of turn taking to which, again, only care providers were apprised. Conferences typically opened with a statement from the chair, which was followed by various staff members’ reports. Families were not formally invited to contribute until all care providers had relayed their respective reports. Although some reports entailed a more dynamic exchange between care provider and family member, if the care provider did not ask the family if they had any questions related to their report, the family had little opportunity to offer comments outside the report. During several observations, families who spoke out of turn, took too much time, or were “off topic,” were interrupted; the staff member relaying the report would redirect the conversation back to the report, thereby reasserting their position with very little acknowledgment of the families’ contribution. The following field note illustrates how, despite a family member indicating she has a list of questions, the conference proceeded in the usual scripted manner, leaving the family member to interject whenever possible. The RCA begins the conversation by relaying that the resident’s hygiene in the room remains the same. The family member agrees, “Really messy, yeah.” The RCA continues: “she . . . threw out six pull-ups, unused, still dry the other day. Now we just give her one. Did she mention it to you?” The family member responds, “That’s number one on my list [of items to discuss].” [Discussion continues around this issue]. The physician then asks how her eating and sleeping are, and the nurse responds. The family member interjects, “That’s on my list too. Good, her diet is terrible.” [Fieldnote: S1, 03.31.2016] Most notable in the conference from which this field note was drawn was that the family member was never directly asked her concerns, despite repeated references to her “list.” It was only at the conference end that a staff member asked if “every question on her list had been addressed,” thereby reaffirming the marginal position occupied by family. Although this type of interaction occurred across sites, this particular exchange came from the site at which a conference information pamphlet invited family to come with questions and concerns. Yet, these concerns held little import in the conference process. In many situations, families appeared to accept their position in relation to the care providers; some expressed that they expected the conference to be a time for them to listen to status reports on their relative. For other families, this process appeared frustrating: They need to give us equal time. For a care conference to be at all useful, it’s got to be input from family at equal measure to input from the facility because it’s the family’s time to say, “these are the things that aren’t working. Here’s some ideas that we know because we know our parent, that will work.” So, care conferences have to be changed dramatically to be effective. [Interview: S3, FM302] Being positioned last on the “agenda,” families were not given “equal” time and thus played an ancillary role in the conference process. Ambiguous Beginnings and Endings Although most conferences began with a clear statement of who the topic of discussion was (e.g., “we’re here to talk about . . .”), no formal introductions were conducted to orient families to those present or the care conference goal. Moreover, the conferences lacked a formal conclusion; no summary or plan of action was articulated and rarely did care providers say goodbye or thank the family for their contributions. As illustrated in the abridged field note later, many conferences “ended” while family members and select care staff continued to discuss care issues: The passing of the [frequency of contact] form once again appears to signify that the conference is finished. The son returns the form to the Director of Care; she stands and walks over to the refreshment table at the side of the room. The Licensed Practical Nurse (LPN) follows her and the two begin a conversation; the dietitian joins them. The son’s companion turns to the physician and asks about the possibility of the resident joining a local support group for individuals with aphasia. The Director of Care, hearing their discussion, moves back towards the table and joins in. The physician stands up and accompanies the LPN as they leave the room. Neither of them say goodbye to the son, who has his head down signing the attendance form, but they wave to his companion. [Fieldnote: S3, 05.04.2017] Taken together, such practices had the effect of placing the care providers and their perspectives at center stage limiting family to a more passive role. With little opportunity for families to contribute, the care conference reflected routine professional business, with family participation, as a lay perspective, having little import to the conduct of such business. Backstage communication shaped a predetermined agenda, while frontstage communication ensured that care providers assumed lead roles, leaving family as extras in the performance of the script (Goffman, 1959/1973). Exclusion by Content: Scripted Reports Families’ conference contributions were also excluded through the privileging of a particular kind of conference content. This was made evident by (a) the clinically generic reporting style of care providers; (b) the lack of affordance for resident biography; and (c) families being given veiled choices, which contributed to disempowered decision making. Clinically Generic Reporting Care providers utilized a formal, clinical reporting style that described the resident’s health status (e.g., blood pressure, weight, diagnoses), participation in care (e.g., capacity to perform activities of daily living (ADLs)), and/or involvement in facility life (e.g., type and number of activities participated in). This script deviated little across conferences reflecting a formulaic way of discussing residents’ well-being. For example, at Site 3, every conference opened with “we are here to talk about [resident]” followed by listing (in various order) the resident’s age, admission date, admission weight, current weight, admission diagnoses, current vitals, and any nursing concerns. The field notes later—one from each site—reflect this generic reporting style: She’s quiet and pleasant. She needs constant supervision for fall risk. She enjoys sitting on the sidelines of activities, or receiving a hand massage. [Fieldnote: S2, 06.08.2016] She’s active in groups, passive groups like music therapy. She likes one-on-ones. She’s stable. She will smile at you. [Fieldnote: S1, 03.17.2016] [H]e’s actively participated in 3 activities, he’s been asleep for 10 and has passively participated in 7. He does spend the majority of his time sleeping. [Fieldnote: S3, 05.04.2017] Without the opening statement denoting the individual for whom the conference is occurring, it would be difficult to discern, based on these homogenous, generic descriptions, one resident from another. Such homogeneity was exacerbated by the lack of use of the residents’ name throughout the conference, polite stock phrases such as “she’s pleasant,” and the excessive use of jargon (e.g., “sit-to-stand”), acronyms, medical speak (e.g., medications used), and derogatory language (e.g., “total vegetable”). Care providers’ reports thus lacked individuality and were dominated by an institutionalized reporting style oriented toward the various disciplines (e.g., nursing, recreation, and dietary) present at the conference. No Room for Biography Considering the generic reporting style described earlier, there appeared to be little opportunity for family to share biographical information about their relative. At one site, conferences opened with a staff member reading the resident’s history, yet family were not invited to enter into this conversation, other than to confirm whether the report was correct. On only one occasion were family invited to share relevant information beyond what might be in the script. Here, the care provider invited the family to “tell us something about [your relative] that is special to you” thereby creating a space for the family to meaningfully contribute to the dialogue. All other times, families’ attempts to share biographical information were ignored or met with pat acknowledgement, with the conversation brought back to the script/agenda of a particular care provider. For example: [Contract Care Manager] “. . . . She’s physically frail, but mentally sharp.” [The daughter] agreed, saying, “She is strong mentally. She had an aneurysm at 47 and had to relearn everything.” [Pharmacist] said, “Yes, we have it on her chart. Blood pressure wise . . .” [Daughter] interjected saying, “She was in a coma for six weeks, but recovered so quickly” Then realising that she spoke over [the pharmacist], she apologized saying, “Oh sorry, sorry to bother you.” [Fieldnote: S2, 06.15.2017] For the most part, family did not freely offer biographical information. Yet, in the earlier exchange, it could be argued that pharmacist “spoke over” the daughter; that is, he dismissed her offering of her relative’s history. In so doing, he conveyed that the knowledge that family hold (i.e., biography and history) is subservient to that of the care providers. Veiled Choice and Disempowered Decision Making Given the scripted nature of the care conference process and the dominance of the care provider perspective, when it came to making decisions related to resident care, families were not necessarily part of the decision. At times, decisions were made by care providers with no family input, whereas at other times predetermined decisions were passed by the family in a seemingly perfunctory gesture; that is, the information offered to family steered them to agree with a particular course of action. This was most notable in discussions related to advance care planning and decisions around “do not hospitalize” orders. In these conversations, the care provider relayed the iatrogenic effects of a hospital admission framing the “choice” in what the care provider or team deemed most appropriate. Rather than actively involving families in the decision, care providers appeared to seek confirmation for their decision. Although, in most cases, families were in agreement (and in some cases noted that their relative would have chosen such a course of action), this particular way of framing did not invite shared decision making nor did it describe the range of options available (only in one case was an advance care planning document shared with the family). Thus, exclusion by content was manifested through the homogenous and clinical way of describing resident experience, and coupled with the lack of solicitation of families’ perspective and involvement in decision making. This underscores an institutional discourse that dominates the care conference process, which creates significant asymmetry and power differentials between care providers and families that limits family’s contributions to the dialogue. As illustrated in the final theme later, it also highlights an ideology that values particular kinds of knowledge. Exclusion Through Devalued Knowledge At all sites, family knowledge was positioned as subordinate to the expert knowledge of the team, signifying that the family perspective had little bearing on the knowledge and information being relayed. Families were positioned as responders to the ongoing commentary, as opposed to commentators in their own right. Two family members took this to mean that their perspective was simply unwanted: P2: And at the end of all that, they looked at us and they said, “Well, we have about five more minutes. Is there anything else you’d like to add?” That’s exactly what they said. And they knew that we had all kinds of stuff to bring in . . . P1: If you don’t want us to speak, don’t bother having us . . . [Interview: S3, FM0323] At Site 2, this positioning of families as responders and the privileging of clinical knowledge appeared to be fuelled by a discipline-centric model underlying the conference itself. Resident’s in the middle. You’ve got, let’s see, the [Registered Nurse], the [physician]. Okay, put the pharmacist here for now. This is my resident here, pharmacist here – it’s a circle – doctor here. We’re all holding hands, working together. [Interview: S2, S0205] Here the implied assumption is that staff do not need to ask families for their input, or engage them as collaborators because they (the staff) are the team, and the circle is closed/complete. Although the staff member in the later excerpt recognizes that this is not the ideal process, her reference to resistance illustrates the power dynamics at play between providers and families. And we give a bit of information, er, opportunity to ask questions, but I don’t think one of our questions is: “so how do you think things are going?” Or “do you have any concerns?” . . . I think we’re making decisions and then informing families, and then families resist that, and then it depends on how they resist that, how it goes from there. [Interview: S1, S0102] Positioned as responders (and resisters), some families felt that they did not have permission to speak up about their relative’s needs or were reluctant to voice their concerns for fear of being perceived as critical and/or accusatory: I did ask . . . at the care conference, I did ask about bedsores. But I don’t feel . . . I don’t feel totally free about asking things . . . I feel that it would be perceived as accusing them of something . . . [Interview: S1, FM0109] Discussion In this study, we investigated the process and content of resident care conferences in nursing homes to understand how resident care is negotiated between care providers and family. Although care conferences are a means to achieving person-centered care planning, previous research indicates that the internal operations of care conferences can be a barrier to accomplishing this goal (Halcomb et al., 2009, Holle et al., 2014). Our findings reflect and extend this literature, revealing some of the barriers to the inclusion of family in care conferences through the highly scripted process, the scripted nature of content, as well as through the privileging of a particular kind of knowledge—that is, the “professional/clinical” knowledge held by certain care providers. As such, findings suggest that the physical presence of families at the care conferences does not necessarily guarantee the active solicitation of their perspective or open communication, and their participation in care conferences could be seen as a tokenistic gesture. Care conferences thus appear less about “care planning,” which would reflect a process of negotiation, and more about “care planned,” in which decisions are made with very limited input from family members. Moreover, when family members do insert themselves into the discussion in care conference, they are positioned as “resisters.” These findings have significant implications for promoting the resident’s perspective at the care conference. Considering the advocacy role played by families, their disempowerment potentially leaves residents without an advocate, the effects of which may be even more pronounced for residents with dementia. In addition, these findings have important implications for reimagining care conferences as a valuable component of person-centered care. Our analysis suggests that in the care conference context, families occupy a marginal position relative to staff. This is reified through predetermined agendas and processes and perpetuated by a generic discourse composed of stock phrases, technical discourses (e.g., medical and nursing jargon), and acronyms without explanation to what was meant in the particular resident context. Although such processes and discourse may be familiar and acceptable to family, it reproduces structural inequality between care providers and families making collaboration difficult to effectively negotiate. Crepeau (1994) argues that care providers tend to strongly identify with and act within disciplinary boundaries giving rise to discursive practices that exclude those outside the discipline, in this case, family. Not only does this limit families’ understanding of what is said, these practices diminish and exclude the families’ nuanced knowledge of their relative’s biography and care experience. Taken together, these microlevel discursive practices engender a process that gives rise to a monologic space characterized by expert one-way communication rather than a dialogic space that promotes family inclusion (Bakhtin, 1981/1992). Indeed, in our study, the care conference appeared to be an institutional performance where the roles and contributions of key stakeholders (or social actors) are assigned or predetermined according to their formal relationship to the institution. That is, given their authority assumed by their professional role, care providers take center stage, whereas families, as a lay perspective, are relegated to the sidelines. Care conferences then can be understood as an institutional conversation that privileges the clinical perspective rather than a forum that allows for teamwork and family participation on equitable grounds. This deeply entrenched practice reflects normative behavior, which family appeared to relatively accept as status quo. However, if care conferences are to serve as a vehicle for collaboration with a goal to bring a variety of perspectives to bear on resident’s everyday care, then it is vital to promote mutual exchange and empower families to participate as equals. This means that it is essential to promote the development of cohesive teams that are inclusive of family, to provide facilitators with mentoring on chairing effective conferences, and to educate both family and care providers as to the purpose of the conference and each other’s roles within them. Moreover, it means that it is imperative to overcome some of the system barriers that impede family–care provider collaboration. As Donnelly and colleagues (2013) observe, “CPMs [care planning meetings] represent an opportunity for the expression and exploration of the lifeworld of both the older patient and their families: however, this fragile space is vulnerable to manipulation or colonisation by the professionals’ systems world” (p. 133). In light of the systems world, our study highlights the need to develop care conferences that is both equitable and sustainable. In our study, no formal policy guided the conference, and in one site, the conference facilitator assumed a formal policy vis-à-vis provincial regulations. As such, there appeared a lack of formalized understanding of the parameters of family participation in care conferences. This resulted in family positioned in instrumental roles with little space to contribute and impeded collaborative teamwork and shared decision making (Halcomb et al., 2009; Opie, 1998). Reflecting the broader issue of the inclusion of families in nursing home life, families’ role in care conferences demonstrates their continued subordinate position and limited discursive power. This role remains unsupported by local nursing home and broader organizational policies (Baumbusch & Phinney, 2014; Puurveen, et al., 2018). In this study, as current regulations do not make explicit that care planning happens within the context of a care conference, how resident care is negotiated between key stakeholders is left to the discretion of individual nursing homes. If care conferences are an expression of care planning and decision making between care providers and family (and resident), then it would seem necessary and important to formalize such process, including the mechanisms by which to promote teamwork including active and meaningful family contributions. However, as Finn (2008) cautions, “teamwork reproduces rather than transforms wider organizations and social structures from which professional divisions emanate” (p.125). As it stands, the normative logic of the systems world (i.e., that which privileges professional knowledge) is a means through which inequality between family and care providers is perpetuated. It is imperative to transform this status quo to ensure family members occupy a similar status as care providers, are positioned as partners with shared responsibility in the care planning process, and are given the opportunity and space to participate in decisions even if it stands in contrast to what the professional team members desire. Recommendations for Practice Drawing on the study findings, Table 2 presents a series of practice recommendations for conducting care conferences. These suggestions are situated in the notion of democratic engagement (Armstrong & Braedley, 2013; Cruikshank, 1999); that is, they reflect the empowerment of families to actively participate in decision making related to the care of their relative, and position residents as active citizens rather than “objects” of care. The upper quadrants highlight practices that contribute to engagement (i.e., “do more of”) and that which promotes more active family participation (i.e., “start doing”), whereas the lower quadrants denote practices that disempower (i.e., “do less of”) and limit democratic engagement (“stop doing”). In essence, there is an integral need to educate care providers on how best to involve family and residents as conversational partners in care conferences, thus optimizing their ability to participate, and to educate families on how to be effective advocates for their relative’s care. These recommendations for practice may be simple to implement with supportive training and education for both care providers and family, including mentorship for skilled facilitation within care conference. However, careful consideration must be given to workplace culture, including the wider structural problems noted earlier, (e.g., lack of policy), to enable family access to opportunities and resources to participate in collaborative relationships with care providers, including participation in care conference. Without such consideration, efforts to promote collaboration are at risk for being unsustainable. Table 2. Practice Recommendations Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Open in new tab Table 2. Practice Recommendations Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Open in new tab Limitations and Areas for Further Research Given that data for this article were drawn from a larger critical ethnography, several limitations emerged. Although we recorded comprehensive and detailed field notes, we did not audio-record the conferences, which meant that capturing both the nuances of interaction and verbatim conversation was, at times, difficult. Future research should consider video observations that would record both nonverbal and verbal dimensions of interactions. In addition, family and residents who participated in the care conferences were not necessarily those who were interviewed as part of the larger study. Although the researchers had an opportunity to talk with some families after the conference, their experience of the specific conference was not explored in depth; therefore, future research should include follow-up interviews. Only English-speaking participants were included in the larger study; given the diversity of residents within nursing homes, research is needed to explore the conference experiences of minority groups. Our analysis focused on family, rather than resident, involvement in care conferences. However, previous research has shown that family dynamics affect resident–family interactions during care planning meetings (Griffith, Brosnan, Lacey, Keeling, & Wilkinson 2004), and families’ perspective may be accorded higher status than the resident (Hedberg, Cederborg, & Johanson, 2007). In our study, the few residents who did attend their conference with their family rarely spoke, even if they were able. Although we did not discern this to be related to family dynamics but to the process of the conference itself, future research should attend to the family–resident dynamic and how residents themselves are empowered to participate. As our larger project focused on family involvement, we did not consider care negotiation in the context of residents without family. Future research with this group would considerably extend the literature on care negotiation in nursing homes. Our analysis considered care conferences as a singular site for the negotiation of care; future research should consider how conferences fit within multiple contexts of care negotiation between family and care providers. Finally, as we did not have access to conference documentation, we do not know if the care conference discussion translated into changed care plans, and this issue should be further investigated. Conclusion Although care conferences can be seen as an expression of teamwork in nursing homes, our results demonstrate that the negotiation of resident care between family, residents, and care providers is hampered by preexisting ideologies that shape how care conferences are conducted. This reifies the clinical perspective, subjugates teamwork, and excludes family from having a meaningful seat at the table. If care conferences are to address the complexity of residents’ experience and promote person-centered care planning, the inclusion of the family perspective is sorely needed. Funding This work was supported by the Canadian Institute for Health Research [grant number 130542]. Acknowledgments We would like to thank the study participants for their time and the anonymous reviewers for their helpful feedback. References Albert , S. M. ( 2016 ). Role of case conferences in dementia-specific vs. traditional care units in German Nursing Homes . Journal of the American Medical Directors Association , 17 , 12 – 13 . doi: 10.1016/j.jamda.2015.10.005 Google Preview WorldCat COPAC Armstrong , P. , & Braedley , S . ( 2013 ). Introduction . In P. Armstrong & S. Braedley (Eds.), Troubling care: Critical perspectives on research and practices (pp. 1 – 16 ). Toronto, Ontario, Canada : Canadian Scholars’ Press . Google Preview WorldCat COPAC Bakhtin . ( 1981/1992 ). 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International Journal of Nursing Studies , 50 , 1122 – 1135 . doi:10.1016/j.ijnurstu.2012.11.001 Google Scholar Crossref Search ADS PubMed WorldCat Puurveen , G. , Baumbusch , J. , & Gandhi , P . ( 2018 ). From family involvement to family inclusion in nursing home settings: A critical interpretive synthesis . Journal of Family Nursing , 24 , 60 – 85 . doi:10.1177/1074840718754314 Google Scholar Crossref Search ADS PubMed WorldCat Reuther , S. , Dichter , M. N. , Buscher , I. , Vollmar , H. C. , Holle , D. , Bartholomeyczik , S. , & Halek , M . ( 2012 ). Case conferences as interventions dealing with the challenging behavior of people with dementia in nursing homes: A systematic review . International Psychogeriatrics , 24 , 1891 – 1903 . doi: 10.1017/S1041610212001342 Google Scholar Crossref Search ADS PubMed WorldCat Scales , K. , Lepore , M. , Anderson , R. A. , McConnell , E. S. , Song , Y. , Kang , B. , … Corazzini , K. N . ( 2017 ). Person-directed care planning in nursing homes: Resident, family, and staff perspectives . Journal of Applied Gerontology . Advanced online publication. doi: 10.1177/0733464817732519 WorldCat © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Gerontologist Oxford University Press

A Seat at the Table: The Positioning of Families During Care Conferences in Nursing Homes

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Abstract

Abstract Background and Objectives Current nursing home policy emphasizes the need for collaborative, team-based care planning in which families and/or residents are actively involved. Resident care conferences are common where care providers, families, and/or residents discuss and coordinate resident care needs and evaluate care goals. This study critically examines the process, structure, and content of care conferences to expand our understanding of how resident care is negotiated among care providers and families in this context. Research Design and Methods This study was part of a larger critical ethnography examining the negotiation of care work among care providers, families, and residents in three purposively selected nursing homes in British Columbia, Canada. Thirty-seven care conferences were observed. Field notes and interview data were thematically analyzed with a focus on what was said, who said what and to whom, whose voice was privileged, and how power manifested between care providers, families, and/or residents. Results As illustrated by three key themes, Exclusion by Process—Following Script, Exclusion by Content—Scripted Reports, and Exclusion through Devalued Knowledge, families were overtly and covertly excluded from contributing to the care conferences. As such, families’ presence did not guarantee open communication or active solicitation of their perspectives. Discussion and Implications The use of predetermined agendas and processes, clinically generic reporting, and technical jargon reproduced the structural inequality between care providers and families making collaboration difficult to effectively negotiate. For care conferences to meaningfully contribute to person-centered care, it is imperative that mutual exchange be promoted and families empowered to participate as equals. Person-centered care, Interdisciplinary team meetings, Critical ethnography Current health care policy in nursing homes emphasizes the need for collaborative, team-based approaches to person-centered care provision, and greater need for the inclusion of residents and/or their families in planning resident care (Edvardsson et al., 2016; Puurveen, Baumbusch, & Gandhi, 2018). In nursing homes, care conferences (also known as case conferences, inter- or multidisciplinary team meetings), bring together health care providers, the resident, and the resident’s family to discuss the resident’s goals of care, preferences, and health status and agree on a person-centered care plan (Phillips, West, Davidson, & Agar, 2013; Reuther et al., 2012). Although some care conferences might target a specific care need (e.g., responsive behaviors in dementia), others are structured more generally to address residents’ day-to-day needs and experiences with care decisions made to support residents’ physical, social, emotional, and spiritual well-being. Care conferences can therefore be seen as a discursive space through which resident care is negotiated among care providers, family, and residents (Dijkstra, 2007; Palm, Trutschel, Simon, Bartholomeyczik, & Holle, 2016). This infers that there is an exchange of information, dialogue, and problem-solving between participants, and that family and residents are empowered to make decisions related to resident care. In the United States, federal regulations of Medicare and Medicaid-registered nursing homes have explicitly identified residents, their family, and direct care providers as central to the care team that decides the goals and outcomes of resident care (Albert, 2016; Centers for Medicare and Medicaid Services (CMS), 2016). Likewise, in the province of British Columbia (BC), Canada, nursing home operators are required, by law, to develop a resident care plan with the participation of the resident and/or a family member that addresses the full spectrum of resident well-being, and is reviewed at least annually (Government of British Columbia, 2009, Part 6, Division 1, 81). Although neither the CMS nor BC’s provincial regulations specify that care conferences serve as a platform for reviewing/modifying the care plan, they appear taken up in this manner (Albert, 2016). Such regulations assume that family, residents, and direct care staff are actively involved in care planning, yet previous research suggests this is not necessarily the reality. Residents are often unaware they are allowed to participate in care conferences (Scales et al., 2017), and resident care aides (RCAs; unregulated workers also known as nursing assistants, health care aides, personal support workers) do not have the time or permission to participate (Caspar, Ratner, Phinney, & MacKinnon, 2016; Scales et al., 2017). Although families want to be involved in decision making regarding their relative’s care, they too have limited formal and informal occasions to do so (Baumbusch & Phinney, 2014; Bern-Klug & Forbes-Thompson, 2008), including participating in care conferences (Scales et al., 2017). Literature Review Research investigating how care is negotiated in care conferences is sparse, with the majority of studies oriented toward investigating care conferences as an intervention versus research into care conferences as routine practice. This research highlights significant issues related to both the content and process, including the involvement of key stakeholders. Halcomb, Shepherd, and Griffiths (2009) explored staffs’, physicians’, families’, and residents’ understanding and perceptions of care conferences in two Australian nursing homes. Results demonstrated that participants expressed confusion over the purpose of the conferences and their own (and others’) role. The researchers observed that disciplines appeared to work in isolation from each other, which pointed to a wider issue of a lack of a collaborative culture in the nursing homes. Dijkstra (2007) conducted systematic observations of four care meetings and interviewed family and staff to specifically examine families’ role and input in conference discussions. Their input primarily involved answering staff questions, and rarely did families pose questions to staff. Further, staff statements were primarily task-oriented and did not address social and emotional needs. Families indicated that although the meetings met their expectations and they felt included, they often did not understand staffs’ language or have the courage to ask for clarification. Some families also questioned the degree to which the agreed-upon plan of care would be implemented. Further understanding of care conference processes can be derived from research examining the implementation of conferences as an intervention to manage responsive behaviors in dementia (Crotty et al., 2004; Holle, Kruger, Halek, Sirsch, & Bartholomeyczik, 2014; Reuther et al., 2012) or improve end-of-life care (Luckett et al., 2017; Parker et al., 2016; Phillips et al., 2013; Reuther et al., 2012). Successful care conferences can be attributed to a skilled facilitator to help keep the conversation on topic and conflict to a minimum (Holle et al., 2014; Luckett et al., 2017). A practiced moderator can also improve family–staff communication, promote greater family involvement in decision making, and, through the exchange of valuable resident information, promote a more person-centered care approach (Luckett et al., 2017). However, the success of the care conference is also linked to the organization’s commitment to staff attendance, training a facilitator, and promoting collaborative relationships between care providers and families (Holle et al., 2014; Luckett et al., 2017). Although such research provides insight into the care conference process, it casts doubt on the active participation and empowerment of families in decision making, and the effectiveness of conferences for collaborative care planning. This article, which is from a larger study about the negotiation of care work among families, residents, and staff in nursing homes, seeks to expand our understanding of meaningful family involvement in care conferences. It critically examines how resident care is negotiated among health care providers and family in the care conference context, including whose knowledge is privileged with respect to resident care and how that knowledge is privileged. Design and Methods Critical Ethnography The method of inquiry for this study was critical ethnography, which analyzes the influence of sociopolitical, historical, and economic factors in relation to everyday experiences (Madison, 2012). Through questions that seek to answer “why” and “what can be done,” critical ethnography shifts the researcher’s focus from describing individuals and groups to challenging the status quo and dominant power structures (Madison, 2012). In relation to care conferences, a critical ethnographic approach helps examine nursing home routines and practices by attending to group process “embedded within an organization’s history, culture, and structure” (Barge & Keyton, 1994, p. 85). A critical lens thus recognizes that social factors, including knowledge and/or power differentials, are salient to the negotiation of care between social actors (e.g., family, nurses, and physicians) within the care conference context. It also illuminates the social structures that characterize the division of labor and the structural inequalities among care providers and families, where one social group may be privileged over another. Setting and Participant Recruitment This study was conducted as part of a larger project examining the negotiation of care work among families, residents, and care providers in three purposively selected nursing homes in BC, Canada. All of the study sites were publicly funded and differed in terms of size, ownership, and location. Site 1 was an urban, 50-bed facility, owned and operated by the local health authority. Site 2 was a suburban, 70-bed, not-for-profit facility, and Site 3 was a rural, 150-bed, for-profit facility. Following University and Health Authority ethics approval, participants (family, resident, and care staff) were recruited through a variety of strategies: letters of information were mailed to all residents’ primary family contact; presentations were made at family council meetings; and project brochures were distributed to staff. Written informed consent was solicited from all participants. Table 1 highlights care conference participant details. Table 1. Care Conference Details by Site Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 aNot applicable: care staff designation not present at site. bTo maintain site anonymity, allied health staff includes dietician, pharmacist, social worker, physiotherapy, occupational therapy, pastoral care, and/or recreation staff. Open in new tab Table 1. Care Conference Details by Site Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 Site 1 (n = 12) Site 2 (n = 13) Site 3 (n = 12) Total (N = 37) Conference type  Initial 5 6 4 15  Annual 7 7 8 22 Mean duration (min) 42 20 27 30  (Range) (20–70) (5–45) (13–34) (5–70) Number of conferences at which stakeholder present  Families 10 5 11 26  Residents 1 4 2 7  Director of care n/aa 13 12 25  Regulated nurses (RN/licensed practical nurse) 12 0 11 23  Residential care aides 9 0 0 9  Care/site manager 2 9 n/a 11  Physician/nurse practitioner 9 13 10 32  Allied health professionalsb 12 13 12 37 aNot applicable: care staff designation not present at site. bTo maintain site anonymity, allied health staff includes dietician, pharmacist, social worker, physiotherapy, occupational therapy, pastoral care, and/or recreation staff. Open in new tab Data Collection Between January 2016 and June 2017, 37 care conferences across the three sites were observed by trained research assistants and the second author. Field notes—documented during the conferences—captured the primary topics and content of the conversation, gestures, conversation flow, and patterns of interaction (Gubrium, 1980). In some circumstances, the researchers had informal conversations with family and care providers following the care conference. Additional information came from interview data from the larger study in which family (n = 37) and staff (n = 35) were asked about their involvement in care decisions, including involvement in care conferences. Data Analysis Data analysis occurred concurrently with data collection to allow for an inductive-deductive, multistep process (Braun & Clarke, 2006). Data management and organization were facilitated by NVivo 11 software. For this article, analyses focused on family (rather than individual resident) participation in care conferences. Guided by the research questions, during multiple, line-by-line readings of the data, we focused on describing the data: what was said; who said what and to whom; whose voice was privileged, silenced, and/or missing; and how power manifested between care providers and family. Initial codes were categorized, compared, and contrasted across data sources resulting in the development of key themes. Emerging codes and themes were then analyzed in relation to potential underlying assumptions and ideologies of the broader nursing home culture and organizational environment, including issues of structural power and human agency. Regular data-analysis meetings provided opportunity for collective analysis. All identifiers to name and place have been removed to protect participant’s privacy. To that end, family members are identified by the prefix FM, and staff by SO. Rigor Trustworthiness of data collection and analysis was supported through prolonged engagement at the study sites, analysis of reflexive field notes written following observations and interviews, peer debriefing, and creation of an audit trail (i.e., a research log documenting decisions, activities, and insights; Onwuegbuzie & Leech, 2007). Throughout the research process, there was ongoing reflexive dialogue between the researchers that gave careful attention to our own social positioning, biases, and assumptions in relation to the research questions. Credibility and confirmability were established through data triangulation (i.e., the use of multiple methods and sources), having multiple team members code data and compare analytic notes, and sharing emerging findings with study sites (Lincoln & Guba, 1985). The rich description of study context, participants, and methods allows readers to determine the transferability of findings to other nursing home settings (Lincoln & Guba, 1985). Findings Context and Description of Resident Care Conferences At all sites, care conferences were formally scheduled on a weekly basis, with initial conferences occurring 6 weeks postadmission and, in keeping with provincial regulations, annually thereafter. Families and residents were not involved in the scheduling, but rather notified of the date/time of the conference and simply invited to attend. Only Site 1 offered families an information pamphlet outlining the care conference process and expectations. Considerable variation existed, both across conferences and sites, in terms of duration and attendance (see Table 1). At Site 1, the 12 observed conferences ranged in length from 20 to 70 min (mean duration: 42 min), although initial conferences tended to last slightly longer. Although only two residents attended their respective conferences, all but two conferences were attended by family. Unlike the other sites, RCAs attended the first 10–15 min of the conference. At Site 2, the 13 conferences lasted from 5 to 45 min (mean: 20 min). Compared to the other sites, fewer conferences were attended by family, yet four residents attended their own conferences. RCAs were not present; however, a contract care manager, who represented the RCAs, attended on their behalf. At Site 3, the 12 observed conferences ranged from 13 to 34 min (mean: 27 min). Again, although only 2 conferences were attended by residents, 11 conferences were attended by families (5 of which were attended by two family members). In the absence of a facility medical director, the resident’s own physician participated in the conference. No RCAs attended the conferences. Thematic Findings The main themes of this study reflect three key ways in which family members were systematically excluded from contributing to resident care conferences. These themes are discussed later: (a) Exclusion by Process: Following Script, (b) Exclusion by Content: Scripted Reports, and (c) Exclusion through Devaluing Knowledge. Exclusion by Process: Following Script The scripted process of care conferences contributed to families being excluded from making meaningful contributions. This was manifested through (a) a predetermined agenda; (b) a predetermined ordering of business; and (c) ambiguous beginnings and endings. A Predetermined Agenda Despite the absence of an explicit written agenda at the care conferences for all three sites, a predetermined agenda appeared to exist. Staff members came to the conference prepared with reports and documentation on residents to be discussed, and in one site, the team met before the care conference to discuss emergent care issues and decide which issues to share with family members and residents. Although these preconference preparations enabled care providers to prepare for the impending discussion, it also predetermined an agenda to which the family was not privy nor invited to contribute. In one case, a family member’s desire for an agenda was met with complacency and indifference: I said, “Well there should be an agenda. If there was an agenda, we’d have that in advance, everyone would know how long it was going to be and what the topics were going to be and who has a chance to say what and how much time was given.” And they [care providers] just looked at each other and it was like [she shrugs her shoulders]. [Interview: S3, FM0317] Similarly, families’ attempts to contribute to the agenda at the start of the conference were often deflected, reframed to be addressed on staff’s terms (e.g., in the context of a formal report), or, as in the field note later, ignored. This care conference is being held over the phone. When it starts, not everyone is present. The Director of Care suggests it would be good to go over some of the medical issues now, before the resident arrives. The daughter pipes up over the speaker phone, “actually, my concerns are more around quality of life, and I know it’s the same for my mum [the resident]”. “OK” says the Director of Care. She continues, “R03-21 was admitted April 16, 2017. What’s her age, FM0321?” “She’s 68” replies FM0321. The Director of Care continues, “her admission weight was . . . , her current weight is . . . , her current diagnosis is dementia.” [Fieldnote: S3, 05.25.2017] In keeping to this predetermined agenda, family and resident concerns remained unaddressed. Consequently, many families did not know what to expect, were unsure about what they were allowed to contribute, or questioned whether their own goals for the conference would be addressed or superseded by the team’s agenda. As FM0126 succinctly expressed, “[Staff] don’t really want to work towards your goals because they have their own in place” [Interview: S1, FM0126]. A Predetermined Ordering of Business The care conference process also reflected an unsaid order of turn taking to which, again, only care providers were apprised. Conferences typically opened with a statement from the chair, which was followed by various staff members’ reports. Families were not formally invited to contribute until all care providers had relayed their respective reports. Although some reports entailed a more dynamic exchange between care provider and family member, if the care provider did not ask the family if they had any questions related to their report, the family had little opportunity to offer comments outside the report. During several observations, families who spoke out of turn, took too much time, or were “off topic,” were interrupted; the staff member relaying the report would redirect the conversation back to the report, thereby reasserting their position with very little acknowledgment of the families’ contribution. The following field note illustrates how, despite a family member indicating she has a list of questions, the conference proceeded in the usual scripted manner, leaving the family member to interject whenever possible. The RCA begins the conversation by relaying that the resident’s hygiene in the room remains the same. The family member agrees, “Really messy, yeah.” The RCA continues: “she . . . threw out six pull-ups, unused, still dry the other day. Now we just give her one. Did she mention it to you?” The family member responds, “That’s number one on my list [of items to discuss].” [Discussion continues around this issue]. The physician then asks how her eating and sleeping are, and the nurse responds. The family member interjects, “That’s on my list too. Good, her diet is terrible.” [Fieldnote: S1, 03.31.2016] Most notable in the conference from which this field note was drawn was that the family member was never directly asked her concerns, despite repeated references to her “list.” It was only at the conference end that a staff member asked if “every question on her list had been addressed,” thereby reaffirming the marginal position occupied by family. Although this type of interaction occurred across sites, this particular exchange came from the site at which a conference information pamphlet invited family to come with questions and concerns. Yet, these concerns held little import in the conference process. In many situations, families appeared to accept their position in relation to the care providers; some expressed that they expected the conference to be a time for them to listen to status reports on their relative. For other families, this process appeared frustrating: They need to give us equal time. For a care conference to be at all useful, it’s got to be input from family at equal measure to input from the facility because it’s the family’s time to say, “these are the things that aren’t working. Here’s some ideas that we know because we know our parent, that will work.” So, care conferences have to be changed dramatically to be effective. [Interview: S3, FM302] Being positioned last on the “agenda,” families were not given “equal” time and thus played an ancillary role in the conference process. Ambiguous Beginnings and Endings Although most conferences began with a clear statement of who the topic of discussion was (e.g., “we’re here to talk about . . .”), no formal introductions were conducted to orient families to those present or the care conference goal. Moreover, the conferences lacked a formal conclusion; no summary or plan of action was articulated and rarely did care providers say goodbye or thank the family for their contributions. As illustrated in the abridged field note later, many conferences “ended” while family members and select care staff continued to discuss care issues: The passing of the [frequency of contact] form once again appears to signify that the conference is finished. The son returns the form to the Director of Care; she stands and walks over to the refreshment table at the side of the room. The Licensed Practical Nurse (LPN) follows her and the two begin a conversation; the dietitian joins them. The son’s companion turns to the physician and asks about the possibility of the resident joining a local support group for individuals with aphasia. The Director of Care, hearing their discussion, moves back towards the table and joins in. The physician stands up and accompanies the LPN as they leave the room. Neither of them say goodbye to the son, who has his head down signing the attendance form, but they wave to his companion. [Fieldnote: S3, 05.04.2017] Taken together, such practices had the effect of placing the care providers and their perspectives at center stage limiting family to a more passive role. With little opportunity for families to contribute, the care conference reflected routine professional business, with family participation, as a lay perspective, having little import to the conduct of such business. Backstage communication shaped a predetermined agenda, while frontstage communication ensured that care providers assumed lead roles, leaving family as extras in the performance of the script (Goffman, 1959/1973). Exclusion by Content: Scripted Reports Families’ conference contributions were also excluded through the privileging of a particular kind of conference content. This was made evident by (a) the clinically generic reporting style of care providers; (b) the lack of affordance for resident biography; and (c) families being given veiled choices, which contributed to disempowered decision making. Clinically Generic Reporting Care providers utilized a formal, clinical reporting style that described the resident’s health status (e.g., blood pressure, weight, diagnoses), participation in care (e.g., capacity to perform activities of daily living (ADLs)), and/or involvement in facility life (e.g., type and number of activities participated in). This script deviated little across conferences reflecting a formulaic way of discussing residents’ well-being. For example, at Site 3, every conference opened with “we are here to talk about [resident]” followed by listing (in various order) the resident’s age, admission date, admission weight, current weight, admission diagnoses, current vitals, and any nursing concerns. The field notes later—one from each site—reflect this generic reporting style: She’s quiet and pleasant. She needs constant supervision for fall risk. She enjoys sitting on the sidelines of activities, or receiving a hand massage. [Fieldnote: S2, 06.08.2016] She’s active in groups, passive groups like music therapy. She likes one-on-ones. She’s stable. She will smile at you. [Fieldnote: S1, 03.17.2016] [H]e’s actively participated in 3 activities, he’s been asleep for 10 and has passively participated in 7. He does spend the majority of his time sleeping. [Fieldnote: S3, 05.04.2017] Without the opening statement denoting the individual for whom the conference is occurring, it would be difficult to discern, based on these homogenous, generic descriptions, one resident from another. Such homogeneity was exacerbated by the lack of use of the residents’ name throughout the conference, polite stock phrases such as “she’s pleasant,” and the excessive use of jargon (e.g., “sit-to-stand”), acronyms, medical speak (e.g., medications used), and derogatory language (e.g., “total vegetable”). Care providers’ reports thus lacked individuality and were dominated by an institutionalized reporting style oriented toward the various disciplines (e.g., nursing, recreation, and dietary) present at the conference. No Room for Biography Considering the generic reporting style described earlier, there appeared to be little opportunity for family to share biographical information about their relative. At one site, conferences opened with a staff member reading the resident’s history, yet family were not invited to enter into this conversation, other than to confirm whether the report was correct. On only one occasion were family invited to share relevant information beyond what might be in the script. Here, the care provider invited the family to “tell us something about [your relative] that is special to you” thereby creating a space for the family to meaningfully contribute to the dialogue. All other times, families’ attempts to share biographical information were ignored or met with pat acknowledgement, with the conversation brought back to the script/agenda of a particular care provider. For example: [Contract Care Manager] “. . . . She’s physically frail, but mentally sharp.” [The daughter] agreed, saying, “She is strong mentally. She had an aneurysm at 47 and had to relearn everything.” [Pharmacist] said, “Yes, we have it on her chart. Blood pressure wise . . .” [Daughter] interjected saying, “She was in a coma for six weeks, but recovered so quickly” Then realising that she spoke over [the pharmacist], she apologized saying, “Oh sorry, sorry to bother you.” [Fieldnote: S2, 06.15.2017] For the most part, family did not freely offer biographical information. Yet, in the earlier exchange, it could be argued that pharmacist “spoke over” the daughter; that is, he dismissed her offering of her relative’s history. In so doing, he conveyed that the knowledge that family hold (i.e., biography and history) is subservient to that of the care providers. Veiled Choice and Disempowered Decision Making Given the scripted nature of the care conference process and the dominance of the care provider perspective, when it came to making decisions related to resident care, families were not necessarily part of the decision. At times, decisions were made by care providers with no family input, whereas at other times predetermined decisions were passed by the family in a seemingly perfunctory gesture; that is, the information offered to family steered them to agree with a particular course of action. This was most notable in discussions related to advance care planning and decisions around “do not hospitalize” orders. In these conversations, the care provider relayed the iatrogenic effects of a hospital admission framing the “choice” in what the care provider or team deemed most appropriate. Rather than actively involving families in the decision, care providers appeared to seek confirmation for their decision. Although, in most cases, families were in agreement (and in some cases noted that their relative would have chosen such a course of action), this particular way of framing did not invite shared decision making nor did it describe the range of options available (only in one case was an advance care planning document shared with the family). Thus, exclusion by content was manifested through the homogenous and clinical way of describing resident experience, and coupled with the lack of solicitation of families’ perspective and involvement in decision making. This underscores an institutional discourse that dominates the care conference process, which creates significant asymmetry and power differentials between care providers and families that limits family’s contributions to the dialogue. As illustrated in the final theme later, it also highlights an ideology that values particular kinds of knowledge. Exclusion Through Devalued Knowledge At all sites, family knowledge was positioned as subordinate to the expert knowledge of the team, signifying that the family perspective had little bearing on the knowledge and information being relayed. Families were positioned as responders to the ongoing commentary, as opposed to commentators in their own right. Two family members took this to mean that their perspective was simply unwanted: P2: And at the end of all that, they looked at us and they said, “Well, we have about five more minutes. Is there anything else you’d like to add?” That’s exactly what they said. And they knew that we had all kinds of stuff to bring in . . . P1: If you don’t want us to speak, don’t bother having us . . . [Interview: S3, FM0323] At Site 2, this positioning of families as responders and the privileging of clinical knowledge appeared to be fuelled by a discipline-centric model underlying the conference itself. Resident’s in the middle. You’ve got, let’s see, the [Registered Nurse], the [physician]. Okay, put the pharmacist here for now. This is my resident here, pharmacist here – it’s a circle – doctor here. We’re all holding hands, working together. [Interview: S2, S0205] Here the implied assumption is that staff do not need to ask families for their input, or engage them as collaborators because they (the staff) are the team, and the circle is closed/complete. Although the staff member in the later excerpt recognizes that this is not the ideal process, her reference to resistance illustrates the power dynamics at play between providers and families. And we give a bit of information, er, opportunity to ask questions, but I don’t think one of our questions is: “so how do you think things are going?” Or “do you have any concerns?” . . . I think we’re making decisions and then informing families, and then families resist that, and then it depends on how they resist that, how it goes from there. [Interview: S1, S0102] Positioned as responders (and resisters), some families felt that they did not have permission to speak up about their relative’s needs or were reluctant to voice their concerns for fear of being perceived as critical and/or accusatory: I did ask . . . at the care conference, I did ask about bedsores. But I don’t feel . . . I don’t feel totally free about asking things . . . I feel that it would be perceived as accusing them of something . . . [Interview: S1, FM0109] Discussion In this study, we investigated the process and content of resident care conferences in nursing homes to understand how resident care is negotiated between care providers and family. Although care conferences are a means to achieving person-centered care planning, previous research indicates that the internal operations of care conferences can be a barrier to accomplishing this goal (Halcomb et al., 2009, Holle et al., 2014). Our findings reflect and extend this literature, revealing some of the barriers to the inclusion of family in care conferences through the highly scripted process, the scripted nature of content, as well as through the privileging of a particular kind of knowledge—that is, the “professional/clinical” knowledge held by certain care providers. As such, findings suggest that the physical presence of families at the care conferences does not necessarily guarantee the active solicitation of their perspective or open communication, and their participation in care conferences could be seen as a tokenistic gesture. Care conferences thus appear less about “care planning,” which would reflect a process of negotiation, and more about “care planned,” in which decisions are made with very limited input from family members. Moreover, when family members do insert themselves into the discussion in care conference, they are positioned as “resisters.” These findings have significant implications for promoting the resident’s perspective at the care conference. Considering the advocacy role played by families, their disempowerment potentially leaves residents without an advocate, the effects of which may be even more pronounced for residents with dementia. In addition, these findings have important implications for reimagining care conferences as a valuable component of person-centered care. Our analysis suggests that in the care conference context, families occupy a marginal position relative to staff. This is reified through predetermined agendas and processes and perpetuated by a generic discourse composed of stock phrases, technical discourses (e.g., medical and nursing jargon), and acronyms without explanation to what was meant in the particular resident context. Although such processes and discourse may be familiar and acceptable to family, it reproduces structural inequality between care providers and families making collaboration difficult to effectively negotiate. Crepeau (1994) argues that care providers tend to strongly identify with and act within disciplinary boundaries giving rise to discursive practices that exclude those outside the discipline, in this case, family. Not only does this limit families’ understanding of what is said, these practices diminish and exclude the families’ nuanced knowledge of their relative’s biography and care experience. Taken together, these microlevel discursive practices engender a process that gives rise to a monologic space characterized by expert one-way communication rather than a dialogic space that promotes family inclusion (Bakhtin, 1981/1992). Indeed, in our study, the care conference appeared to be an institutional performance where the roles and contributions of key stakeholders (or social actors) are assigned or predetermined according to their formal relationship to the institution. That is, given their authority assumed by their professional role, care providers take center stage, whereas families, as a lay perspective, are relegated to the sidelines. Care conferences then can be understood as an institutional conversation that privileges the clinical perspective rather than a forum that allows for teamwork and family participation on equitable grounds. This deeply entrenched practice reflects normative behavior, which family appeared to relatively accept as status quo. However, if care conferences are to serve as a vehicle for collaboration with a goal to bring a variety of perspectives to bear on resident’s everyday care, then it is vital to promote mutual exchange and empower families to participate as equals. This means that it is essential to promote the development of cohesive teams that are inclusive of family, to provide facilitators with mentoring on chairing effective conferences, and to educate both family and care providers as to the purpose of the conference and each other’s roles within them. Moreover, it means that it is imperative to overcome some of the system barriers that impede family–care provider collaboration. As Donnelly and colleagues (2013) observe, “CPMs [care planning meetings] represent an opportunity for the expression and exploration of the lifeworld of both the older patient and their families: however, this fragile space is vulnerable to manipulation or colonisation by the professionals’ systems world” (p. 133). In light of the systems world, our study highlights the need to develop care conferences that is both equitable and sustainable. In our study, no formal policy guided the conference, and in one site, the conference facilitator assumed a formal policy vis-à-vis provincial regulations. As such, there appeared a lack of formalized understanding of the parameters of family participation in care conferences. This resulted in family positioned in instrumental roles with little space to contribute and impeded collaborative teamwork and shared decision making (Halcomb et al., 2009; Opie, 1998). Reflecting the broader issue of the inclusion of families in nursing home life, families’ role in care conferences demonstrates their continued subordinate position and limited discursive power. This role remains unsupported by local nursing home and broader organizational policies (Baumbusch & Phinney, 2014; Puurveen, et al., 2018). In this study, as current regulations do not make explicit that care planning happens within the context of a care conference, how resident care is negotiated between key stakeholders is left to the discretion of individual nursing homes. If care conferences are an expression of care planning and decision making between care providers and family (and resident), then it would seem necessary and important to formalize such process, including the mechanisms by which to promote teamwork including active and meaningful family contributions. However, as Finn (2008) cautions, “teamwork reproduces rather than transforms wider organizations and social structures from which professional divisions emanate” (p.125). As it stands, the normative logic of the systems world (i.e., that which privileges professional knowledge) is a means through which inequality between family and care providers is perpetuated. It is imperative to transform this status quo to ensure family members occupy a similar status as care providers, are positioned as partners with shared responsibility in the care planning process, and are given the opportunity and space to participate in decisions even if it stands in contrast to what the professional team members desire. Recommendations for Practice Drawing on the study findings, Table 2 presents a series of practice recommendations for conducting care conferences. These suggestions are situated in the notion of democratic engagement (Armstrong & Braedley, 2013; Cruikshank, 1999); that is, they reflect the empowerment of families to actively participate in decision making related to the care of their relative, and position residents as active citizens rather than “objects” of care. The upper quadrants highlight practices that contribute to engagement (i.e., “do more of”) and that which promotes more active family participation (i.e., “start doing”), whereas the lower quadrants denote practices that disempower (i.e., “do less of”) and limit democratic engagement (“stop doing”). In essence, there is an integral need to educate care providers on how best to involve family and residents as conversational partners in care conferences, thus optimizing their ability to participate, and to educate families on how to be effective advocates for their relative’s care. These recommendations for practice may be simple to implement with supportive training and education for both care providers and family, including mentorship for skilled facilitation within care conference. However, careful consideration must be given to workplace culture, including the wider structural problems noted earlier, (e.g., lack of policy), to enable family access to opportunities and resources to participate in collaborative relationships with care providers, including participation in care conference. Without such consideration, efforts to promote collaboration are at risk for being unsustainable. Table 2. Practice Recommendations Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Open in new tab Table 2. Practice Recommendations Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Do more of Start doing • Introduce family and staff at each conference • Use person-centered language • Share stories and anecdotes of experiences with resident • Invite family to share resident biography, preferences, and values • Provide family with an information leaflet about the purpose of conference as well about goals of care (e.g., advance directives) • Invite family to contribute to setting the agenda • Use a skilled moderator to facilitate the conference • Ask family to voice their concerns at the beginning of the conference and give them adequate time to share • Ask family open-ended questions to elicit their opinions • Thank family and others for participation Do less of Stop doing • Reporting on resident status that bears little relevance to his or her current psychosocial, spiritual, and physical well-being • Framing questions or conversations for which there is a predetermined answer • Using jargon, medical-speak, and derogatory language • Interrupting family and residents, even though their contribution might deviate from the topic at hand • Excluding family and residents from the conversation either through words or actions Open in new tab Limitations and Areas for Further Research Given that data for this article were drawn from a larger critical ethnography, several limitations emerged. Although we recorded comprehensive and detailed field notes, we did not audio-record the conferences, which meant that capturing both the nuances of interaction and verbatim conversation was, at times, difficult. Future research should consider video observations that would record both nonverbal and verbal dimensions of interactions. In addition, family and residents who participated in the care conferences were not necessarily those who were interviewed as part of the larger study. Although the researchers had an opportunity to talk with some families after the conference, their experience of the specific conference was not explored in depth; therefore, future research should include follow-up interviews. Only English-speaking participants were included in the larger study; given the diversity of residents within nursing homes, research is needed to explore the conference experiences of minority groups. Our analysis focused on family, rather than resident, involvement in care conferences. However, previous research has shown that family dynamics affect resident–family interactions during care planning meetings (Griffith, Brosnan, Lacey, Keeling, & Wilkinson 2004), and families’ perspective may be accorded higher status than the resident (Hedberg, Cederborg, & Johanson, 2007). In our study, the few residents who did attend their conference with their family rarely spoke, even if they were able. Although we did not discern this to be related to family dynamics but to the process of the conference itself, future research should attend to the family–resident dynamic and how residents themselves are empowered to participate. As our larger project focused on family involvement, we did not consider care negotiation in the context of residents without family. Future research with this group would considerably extend the literature on care negotiation in nursing homes. Our analysis considered care conferences as a singular site for the negotiation of care; future research should consider how conferences fit within multiple contexts of care negotiation between family and care providers. Finally, as we did not have access to conference documentation, we do not know if the care conference discussion translated into changed care plans, and this issue should be further investigated. Conclusion Although care conferences can be seen as an expression of teamwork in nursing homes, our results demonstrate that the negotiation of resident care between family, residents, and care providers is hampered by preexisting ideologies that shape how care conferences are conducted. This reifies the clinical perspective, subjugates teamwork, and excludes family from having a meaningful seat at the table. 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Person-directed care planning in nursing homes: Resident, family, and staff perspectives . Journal of Applied Gerontology . Advanced online publication. doi: 10.1177/0733464817732519 WorldCat © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)

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The Gerontologist – Oxford University Press

Published: Sep 17, 2019

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