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Original Research

Defining and Redefining Family Involvement in Practice: An Implementation Trial of a Locally Adaptable Patient-Centered Professional Development Tool in Two Ontario Intensive Care Units

Alexanian, Janet PhD; Fraser, Ian MD; Smith, Orla PhD; Kitto, Simon PhD

Author Information
Journal of Continuing Education in the Health Professions: Fall 2021 - Volume 41 - Issue 4 - p 253-262
doi: 10.1097/CEH.0000000000000402
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Abstract

The integration of the patient experience through roles in hospital committees, forums, and other collaborative opportunities reflects a shift toward prioritizing patient involvement both in the development of policies and as a source of knowledge for health care workers to learn from and integrate in practices. This article discusses an implementation trial of a professional development tool for frontline health care workers, which exposed the challenges of integrating patients and their proxies in the everyday context of the intensive care unit (ICU). In particular, although patient involvement is widely promoted at both institutions included in this study, the implementation of this tool highlighted the ways in which this involvement is mediated by health care providers and the biases and challenges they face. Our educational intervention aimed to elicit these issues and explore them within the contextual factors of the ICU.

The increased focus on patient-centered care in health care delivery over the past 20 years has highlighted the challenges of shifting from a clinician-centered approach to one that includes patients and their family members in care plans. ICUs, in particular, are a critical site of decision-making where family members often act as proxies for patients who require surrogate decision-makers because of their condition. In addition to consent, presence, and decision-making, ICUs also highlight the role of families in their loved ones' care through emotional and spiritual support, comfort, translating, and contributing to physical care. The association of patient-centered and family-centered care with better clinical outcomes is well documented in the literature.1–8

At an institutional level, hospitals' policies and structures have reflected the shift toward patient-centered care through the establishment of patient advisors, committees, open visitation policies, and attention to policies related to family presence on rounds and at resuscitation.9 Although the benefits of family involvement on patient care are well documented—both in care outcomes and from the perspective of health care workers—numerous studies point to the challenges of such involvement, particularly for nurses.10–17 The formalization of family involvement guidelines seems to be particularly difficult due to issues ranging from health care provider attitudes toward patient-centered care18,19 to practical and logistical considerations.20,21

In their scoping review of patient and family involvement in critical care settings, Olding et al22 found that the bulk of research has focused on the role of family members as recipients of care: “The family involvement literature often views family members as vulnerable subjects who must be brought into the fold of care (ie, as patients) or as resources for improving patient outcomes, but very rarely as individuals to be partnered with by health care professionals in the care of the patient.” They point to the need for research that fills this gap by not only exploring various health care professionals' conceptualizations of “family involvement” (thus, not taking the concept for granted), but most importantly, examining the wider organizational and contextual factors that shape the condition for family involvement. What is lacking, in particular, is ethnographic research that explores these issues in ways that can simultaneously situate them within their local context and within broader social, cultural, and professional processes. The significance of such an approach is that it can address the barriers that exist in practice to meaningful patient-centered care. The intersection of professional cultures, hierarchies, and power dynamics with logistical aspects of the unique ICU environment (routines, structures, and work processes) needs to be unpacked to understand why things work the way they do and how to move toward a more patient-centered approach.

In our own 2-year ethnographic research in eight ICUs in North America, tensions around family presence and involvement were observed and informed the development of a tool to help ICU frontline staff better understand and facilitate family involvement in care.23–28 This tool aimed to address inconsistent attitudes and policies related to family presence and involvement while creating an opportunity for ICU staff to critically reflect on the impacts of family involvement on their own experiences. Specifically, the family involvement tool (FIT)28 directly invites family members in their ICU to express to ICU staff how they would like to be involved in their loved ones' care and prompts ICU staff to critically reflect on their own attitudes and notions of what family involvement should comprise.

METHODS

Study Design

The current study is based on an implementation trial of this tool in two Ontario ICUs, allowing us to better understand the cultural acceptance of family involvement among staff and the specific professional, relational, processual, and organizational factors that shape their experiences of family involvement. The study was undertaken in two concurrent phases: (1) intervention and (2) process evaluation. The intervention phase of the study involved the creation of a local implementation team at each ICU, which was responsible for adapting the tool to their local setting. This involved modifying the family involvement record card, making decisions about implementation, and organizing and facilitating staff reflexive sessions. Process evaluation alongside this process included ethnographic observation of tool implementation (including planning meetings, staff education, reflexive sessions, and tool modification), and semistructured interviews with ICU staff.

Although this study also involved ethnographic observation in the ICU, interviews with implementation team members and ICU staff, document analysis (including family involvement records), and interviews with family members of patients, this article will focus exclusively on the insights from ICU nursing staff on family involvement that emerged from the implementation trial. Specifically, ethnographic observations of the reflexive sessions and individual semistructured interviews. Our ethnographic observation of the reflexive sessions and semistructured interviews highlighted how patients and families were represented by ICU staff, the specific challenges of their presence and involvement for nursing in particular, and tensions related to the role of families as proxies for patients within the ICU environment.

By conducting interviews and observing reflexive sessions alongside the implementation of the tool, we were able to not only examine health care provider views on family involvement but also explore the areas of tension that arose in practice because the introduction of the FIT exposed processual, relational, and organizational factors that shaped the conditions of possibility of family involvement. In particular, unspoken preferences, assumptions, and concerns about family involvement were brought to the fore because this intervention disrupted well-entrenched power dynamics related to family involvement and professional boundaries.

The FIT tool has two main components. The first is providing patients' family members with a “family involvement record.” This card asks families, “How would you like to be involved in the delivery of care of your loved one?” and provides them with examples of the spectrum of involvement (eg, not being physically present but calling in or to helping with physical care) and a blank space where they could provide their answer. This ensures that all families are provided the opportunity to be involved and counsels them that there is no “correct” way of supporting their loved one.

The second component of the FIT helps facilitate the recording and sharing of information about families among health care providers. Once the card is completed, it is then placed in a visible location, eg, patient chart or whiteboard in room. Recording this information on a card that is visible to all heath care providers in the patient's care team provides increased opportunities for continuity of care related to the family amid heath care provider rotation and staff handover. The final component of the tool is an educational intervention that allows the unit to reflect critically on their own understanding of family involvement and explores the spectrum of ways families in their unit have defined involvement. This is achieved by collecting and using the completed family involvement records for use in the reflexive session that provides frontline staff a dedicated space for reflection on family involvement as it is actually experienced in their ICU.

METHODOLOGICAL APPROACH

To ensure the trustworthiness of the research, data collection, analysis, and reporting analytical were guided by Richardson's29 four criteria for evaluating ethnographic research: substantive contribution to the phenomena under study, esthetic merit, impact, and a sense of an authentic expression of reality as experienced by the subjects.

Reflexive sessions were organized by the implementation teams at each site, using the FIT guide.28 Each implementation team decided the number, frequency, and length of the sessions. Following best practice hospital-based ethnography principles, J. Alexanian conducted ethnographic nonparticipant observation of the sessions,30 including the recording of detailed field notes.31 The reflexive sessions invited ICU staff to reflect on a range of ways families want to be involved in the care of their loved ones and to express their opinions and experiences related to family involvement.

As per standard ethnographic practices, observation and interviewing methods were used purposefully to attain a deeper understanding of the phenomenon.32 Qualitative semistructured interviews were conducted with nurses to further explore themes raised in the reflexive session and to examine their experiences and ideas on family involvement and the tool in more detail.

Participant Recruitment

The two medical surgical ICUs in the study are both located in urban areas in Ontario, and both have recently shifted to a hospital-wide policy of open visitation for family members at the start of the study. ICU1 is a 24-bed unit in an academic tertiary care hospital and serves a highly ethnically and socioeconomically diverse patient population. ICU2 is a 19-bed unit in a university-affiliated teaching community hospital. Knowledge users (health care workers who had an interest in implementing and collaborating on improvements to the tool) were identified at each site during the grant proposal process, and these local health care providers identified implementation teams at each site.

At both sites, the implementation team included nursing managers, clinical educators, and social workers. The implementation team at each site decided that tool implementation and involvement in the reflexive sessions would focus on nursing staff. As a result, all ICU nursing staff were eligible to participate in the study. Reflexive sessions at both sites were held both during day and night shifts, and nurses were informed about the sessions through nursing huddles, posters in the unit, and emails from clinical nurse educations and/or nursing managers. This also included information about the study of the implementation trial. At the beginning of each session, J. Alexanian described the study and details of ethnographic observation. Participants were informed that data collected during the session would not be used for performance assessment or evaluation purposes. Written informed consent was given by each participant before the session began, and they were informed that they could withdraw from the study at any time.

Information about the implementation trial and invitation to participate in interviews were also shared through at nursing huddles and through emails from nursing management. Staff who were interested in participating in interviews contacted J. Alexanian directly, and a convenient interview time in a private room adjacent to the ICU was arranged. For confidentiality, ICU staff were not informed of who participated in the study and each participant was assigned a unique number. Written consent was given by each participant before the interview began, and participants were informed that they could withdraw from the study at any time.

Ethics Approval

This study received full board review and approval from the Ottawa Health Science Network Research Ethics Board (REB 17-060) and the Toronto Academic Health Sciences Network Research Ethics Board (REB 17-060).

Data Collection

Data collection took place between April 2017 and October 2018. All research activities were conducted by J. Alexanian, a medical anthropologist (PhD) with expertise in qualitative research. Seventeen interviews with nurses were conducted across both sites. One nurse withdrew from the study, and their interview was destroyed (as stipulated in the REB approval) and not included in the data analysis. Nine reflexive sessions were observed, with a total of 37 participants across both sites. Participants included both male and female nurses, with years of experience ranging from 3 to over 30. Although the two ICU sites did not differ widely in the number of ICU beds, ICU1 was a considerably busier ICU during the time of the study, being close to, or at capacity on most days. In addition, ICU1 had a much larger nursing staff and implementation team, allowing more opportunities for reflexive sessions and interviews (Table 1).

TABLE 1. - Table of Subjects
Subject Identifier Male/Female No. of y Working as an RN No. of y Working in ICU
ICU 1
 RN1 Female 12 10
 RN2 Female 21 19
 RN3 Female 10 9
 RN4 Female 15 10
 RN5 Female 31 20
 RN6 Female 28 24
 RN7 Withdrawn
 RN8 Female 15 10
 RN9 Female 8 1
 RN10 Female 29 13
 RN11 Male 3 3
ICU 2
 RN1 Male 10 10
 RN2 Female 21 13
 RN3 Female 19 19
 RN4 Female 30 30
 RN5 Female 21 20
 RN6 Female 18 12
Reflexive Session No. of Participants
ICU 1 29 total
 1 2
 2 3
 3 2
 4 6
 5 4
 6 5
 7 7
ICU 2 8 total
 1 4
 2 4
ICU, intensive care unit; RN, Registered Nurse.

Volunteer, criterion-based and snowball sampling was used to recruit ICU nursing staff at each site for the interviews.33 This sampling framework was guided by an overall theoretical sampling technique by which researchers recruit individuals as required to achieve the goals of analytical saturation whereby no new themes are emerging from the interview data.34

Data Analysis

J. Alexanian identified and organized themes from typed field notes and transcribed interviews in Word using thematic content analysis. J. Alexanian read through all field notes and transcripts to identity and define themes, which were then organized into a coding manual. The coding manual was used to identify quotes from interviews and passages from field notes, and these were then organized by theme. A researcher triangulation process was engaged to increase the rigor of the analysis process whereby J. Alexanian and S. Kitto met throughout the analytical process to discuss the emerging themes from the data and review representative data.33

RESULTS

We observed that when faced with the possibility of openly inviting all families to participate in their loved ones' care, nurses expressed concerns about family participation that illuminate how family involvement currently works in these ICUs and, perhaps more importantly, the reasons why it works the way it does. Specifically, based on ethnographic observation of reflexive sessions and interviews with nursing staff, we identified five themes related to these practices: (1) definitions of appropriate family involvement, (2) how the ICU environment complicates involvement, (3) assessment of families, (4) protecting the patient, and (5) concerns about surveillance and boundaries.

Defining Appropriate Family Involvement

In interviews with the research team, nurses recognized some of the ways in which family presence can be beneficial to the patient and the health care team. The ability of family members to calm the patient when agitated, delirious, or disoriented was emphasized as one of the main benefits of family presence:

Let's say they just had a surgery, they come to the ICU, they're just about to regain their consciousness. So now it's a different environment and they don't speak English. So that's when you need the family the most. So, yeah, even that's when I've noticed, like, [a nurse] would not call the family, they were just busy settling the patient. And then, at the end, I would see they're restraining the patient because they're getting restless, agitated. But they don't know the root cause, that because of the language issue … Sometimes they have the underlying disease, like, let's say Alzheimer's. (ICU2 RN2)

“[Y]ou know the mom might be in the room all the time, but it's a benefit for you. They'll be less stress for you for the mom to be there. And the young girl, she was 19, and having the mom there, like we're unfamiliar people, it was a bonus.” (ICU2 RN3)

The role of families as translators was also identified as important, for instance, a patient's inability to understand what is happening around them because of a language barrier can contribute to feelings of disorientation and confusion.

On the other hand sometimes as staff we need the family there. One is translation. I can't imagine how vulnerable you'd feel as a patient when you can't even understand what people are saying or asking you to do and what you've been doing in this place that you don't recognize, right, that's got to be terrifying. (ICU1 RN5)

Family Involvement Has to be Flexible to Accommodate Complexities of Critical Care

Nurses explained that they take their patient's condition into consideration when determining what forms of family involvement are appropriate. As one nurse explained, a patient's prognosis can also be a consideration when determining what forms of family involvement to allow:

I'm very flexible. And it also depends on the situation as well. We had a patient here one time, I think she was very ill at the moment and every time we were doing peri-care, because there was a big wound dressing that we needed to do on her back, the family insisted on helping with the wound dressing. As much as possible we let them partake. But it also depends on the patient, right? (ICU2 RN1)

In our interviews, nurses frequently pointed out how family involvement should look depending on the condition of the patient—whether the patient is awake, sedated, or approaching end-of-life/palliative care.

I think if it's a really situation where they're really sick and you don't know how long they have, then the family members being there all the time is fine. I mean, obviously they want to be there if their … That's different, I find. (ICU2 RN5)

This notion of variability in a patient's condition was emphasized and also extended to nurses' descriptions of the critical care environment more generally. The rapid changes in a patient's condition, emergent nature of the ICU environment, and complexity of critical care work all create a highly dynamic work environment. Nurses explained that the nature of this environment complicates possibilities for family involvement in care:

The only thing that I worry about though is what if they want something that we can't give them. Okay, well, I want to be able to turn them and put cream on their back today or something, but they're not stable enough to do that. People don't understand most of the time that I'm sorry, your loved one, they're too unstable, I actually don't even want you to touch them today. That's how sick people can get, that they're sensitive to anything, any touch. So, we wouldn't turn people for fear of them passing away due to that. (ICU1 RN1)

In light of this, nurses explain the importance of their ability to control and direct how and when families are involved in care. They also acknowledge that while some families feel entitled to be involved, others do not know how to be involved, or are afraid to ask:

I think, as a nurse, you have to delegate because sometimes, [the family members] sit in a chair because they don't know. It's medical, I think they are fearful of something. But once you direct them and teach them, they will do it. Most of the time, the nurses should initiate, because I think they fear, especially in ICU, because the patients sometimes have those tubes. They fear things, they don't know what to do, what not to do. (ICU1 RN8)

[Families] really don't know what to do when they're here. They don't know how to participate because they're in the ICU, I think. (ICU2 RN4)

Assessing Families to Determine How and When They Should be Involved

The assessment of family members to determine how or whether to involve them in care was a highly informal and subjective process. When asked about how they decide if and when to involve family members nurses pointed to a “feeling” or “instinct”:

I think we ask, it's just not as formal. A lot of our care is intuitive. When you talk to a family you know intuitively how much they care. You can gauge what kind of involvement the family is expecting. If you can't tell by the first hour, you can tell half way through your shift. [field notes, June 14, 2017]

If you're doing this long enough, you get an idea of what family need… If they want to talk, some people will talk you to death. But you know instinctively that's what their needs are. It's instinctual. (ICU1 RN4)

Nurses also acknowledged the degree to which their assessments are based on assumptions established on the patient's condition or other assumed characteristics, such as ethnic identity:

Yeah, I guess it's my judgement of what role they play. So we have Muslim families who mandate that they take part in post-mortem care. So that's just offered, of course you can. I need to be here, I need to make sure that there is a legality of things that are done as well but no for sure… Daily care for an invalid, invalid patient has to be up to them. So there is a certain judgement on my part absolutely (ICU1 RN6)

While nurses valued flexibility in determining if, when, and how families should be involved, they also acknowledged that their subjective assessments could be erroneous:

I presume that they want to be involved, I guess, which is wrong. It's in my assumption. But I guess my assumption comes from how I feel about the family. Because I can feel some family want to be involved and some family just want to sit there and they don't want to be that involved. So, that's where my assumption comes from. I feel the family but I don't ask that question the moment I meet them for the first time. (ICU1 RN3)

Considerations When Determining Appropriate Family Involvement: Family Dynamics and Protecting the Patient

In addition to assessing family members, nurses explain that they also take the comfort level of the family members and the patient into consideration when deciding how/whether to involve family members in care:

You don't want to be cutting off the family or having them out of the room when they could be of benefit to the patient but it's a fine line sometimes between the visitors exhausting the patient. Like I said, some patients are even aware if somebody is just sitting beside them reading a book but they feel this anxiety or maybe need to interact … It's no hard-and-fast rule. (ICU1 RN5)

Relatedly, nurses also explained that their role involves protecting the patient and their dignity. To this end, they explained that their assessment involves the patient as well, both in their specific wishes related to family involvement and the family dynamics they observe.

Sometimes when the patient can't speak for themselves, I think, like, would they really want their family member here? Sometimes is hard so I'll say, do you want to step out for a bit while I clean him up and then you can come back? And most of the time people are okay. Some people say, no, I want to stay, and then some people help out, fine, I don't know, each to their own. But if the patient is awake, I'll say, do you want him to step out or would you like him to stay or whatever? Because maybe the family member would like to stay, but maybe your mother, who is unconscious and can't speak for herself, doesn't want you to stay. (ICU2 RN5)

This also points to some of the challenges that nurses identify related to family involvement, such as directing care in inappropriate ways. A common sentiment in the interviews among more senior nurses was that they experienced a “shift” toward more patient-centered care:

Right around 2000 I would say I noticed a change where families were not only dictating care but absolutely defining care despite medical advice… So post 2000 it was more common to have family members dictating how long, how much, how futile was irrelevant, that kind of a difference. (ICU1 RN6)

And I have to say, nurses are like, it's my patient, it's my patient, you don't tell me what to do with my patient. It was very much a control thing and trying to shift that away. (ICU2 RN6)

Nurses expressed their concerns about increased family involvement in cases where this expanded role infringes on the decisional authority of the health care team. Specifically, when families make decisions that are not in the best interests of the patient or directly in contradiction of patient wishes. In their descriptions of these instances, nurses often describe their responsibility to protect the patient and recognize that the family and patient cannot be assumed to have the same needs and values.

Obviously, there are difficult families sometimes, and they might not share the same values or morals that you do. Or they might not want the best for the patient, either. We've seen that happen as well, where they have their own agenda, and they're not making the decisions like what the patient would want. … So, that's definitely difficult, because how do you support a family that's not supporting the patient's wishes? So, that's the big thing, I think, we all go through. (ICU1 RN9)

Although patient safety, patient dignity/privacy, and family member comfort level were primary considerations when assessing family members, additional concerns related to surveillance of nursing work and beliefs about appropriate family member roles were also often involved.

Concerns About Family Involvement: Surveillance and Boundary Negotiation

Nurses at both sites described the “shift to open visitation” as one involving the negotiation of boundaries. Nurses regularly described the patient as “their patient” and the patient room as “their workspace”:

I just want my space, as a professional working …In the critical care area, I think you have to have a lot of structure and not a clutter. So, clutter around your bedside, or clutter in your head. And I just feel that I won't have any control over my environment in that space to do my work. (ICU1 RN4)

Along these lines, nurses describe the stress of being watched as they work and a sense of having their professional integrity challenged:

I've experienced that that I feel like I'm being dictated on this is how you should be doing this and that's how you should be doing that … I can see families filling in a few things that I missed [during handover], especially if the family has been there for 12 hours with me. And I could also see that as the other way around where they don't agree with the report that I'm giving or handing over to the next nurse and they would jump in. And then that sort of throws off the reporting …We should be setting boundaries. (ICU1 RN3)

Even when nurses expressed a more explicit acceptance of family presence, they describe the ways in which they protect their own workspace and professional privacy:

Sometimes you turn the patient less because the family is always there and will not leave. You don't want to ask them to leave. (Reflexive session 6, field notes)

In both settings, many nurses interpreted constant family questions as distrust of their work and continual presence as a means to supervise nurses. Several nurses explained that they had concerns about the possible legal or disciplinary implications of this surveillance:

I think we [RNs] are pulling away from the families. We don't want to develop relationships. There are more demands from the family. Now RNs are more hesitant about bringing the family in. People are worried, you hear about lawsuits, etc. We noticed that families are now noticing things and mentioning things that in the past they wouldn't even be aware of. Like, how long a nurse is on break. (Reflexive session 4, field notes)

When discussing families who are always present at the bedside, they explained that they can feel rushed in their work or avoid some nursing care because they feel uncomfortable in the family's presence or they worry that they will make the family members uncomfortable:

[In cases where the family is] involved but from a distance, I think these patients receive better care because we are not micromanaged by a family member. (Reflexive session 4, field notes)

Conversely, the nurses interviewed did provide examples of how increased family presence can improve care because of increased surveillance of nursing work or by “humanizing” the patient and the nurses own clinical behavior.

I wish I could say I never [focused on monitors more than patient as a person], but it's true that you come in and you see people ill every single day, it becomes normal in a way. … [When the family member is there], it personalizes it more, for sure … you have a bit more of a compassionate streak to you when you're taking care of them because you know something a bit about their background maybe. (ICU1 RN1)

In many ways, it might actually improve nursing care, because if somebody is watching you or at the bedside, maybe you do things at a higher standard. Personally, my standard is always the same, but I just wonder with some people. (ICU1 RN10).

[Families] are a check and balance system for us, to make sure that things are done in a timely manner. Are they going to get their walk today, are they going to get their CT scan today, some tick boxes for them, just so that they're keeping up with us, and what's going on. (ICU2 RN4)

DISCUSSION

The introduction of the FIT in two ICUs served to reveal the power dynamic inherent in the informal realm of family involvement. Specifically, nurses maintained a provider-centric notion of family involvement wherein they defined, assessed, facilitated, and limited family members' role in care. Our findings revealed three main themes around family involvement: nurses see their role as defining “appropriate” family involvement, nurses informally assess families to determine when and how they should be involved, and nurses justify the need for their gatekeeping role based on concerns for patient care and their professional autonomy.

Appropriate Family Involvement

Nurses we interviewed acknowledged the value of families in supporting their loved ones through their presence, which is consistent with the literature on nursing attitudes toward family involvement.35–38 Previous research has found that nurses viewed the role of family as primarily providing comfort to their loved one as opposed to more active involvement in care.12,18,38,39 In our study, nurses expressed their ideas of what “appropriate” family involvement entails. In addition to comforting the patient, nurses described other passive forms of participation as appropriate, such as “humanizing the patient” by being present, answering questions from the medical team, and listening to pertinent information. This is consistent with the literature on family involvement in the ICU, which describes the ways in which nurses largely decide when and how to involve family members in their loved ones' care.40–43

Family Involvement Requires Careful Assessment

Nurses' concerns about family involvement have been well documented. In previous studies, nurses in ICUs describe increased family presence as having a negative impact on their workflow,11 workload,19,44–50 and, in some cases, appropriate patient care.17,38 Although all of these concerns were reflected in our study, we also observed additional concerns related to family member distrust of nurses and surveillance of their work. These concerns have been documented in more recent studies of nurse experiences of family involvement.10,11 We found that nurses valued their ability to control appropriate roles for family members and the ability to control and modify these roles in the context of their concerns about surveillance, personal comfort level, and the impact family presence can have on their work. In a study of patient-centered and family-centered care, Hetland et al14 found that for nurses, “involving family caregivers in patient care in the ICU requires careful assessment” in the extent to which nurses encourage families to participate in care, determining which family caregivers should be involved in patient care, and specific methods of family involvement. Earlier studies have found that nurses preferred family presence that is limited and controlled and that nurses have historically exercised a considerable amount of control in their domain.18,39,49,51–53 Asking all family members how they would like to be involved in the care of their loved ones (the first component of the tool) is therefore a radical departure from the ways in which families are currently engaged in the ICU.

What is at stake in this proposition is the power that nurses currently maintain over family involvement. As is well documented in the literature, ICU nurses exercise considerable control over family presence (including during CPR and procedures), visitation, and involvement in care.20,39,49,54–58 Systematic reviews and earlier studies of visitation policies found that rules governing visitation are often based on the discretion of staff and are not formalized.20,55,59–61 As we discovered, the proposal to inform families that they have the option to both be involved and define that involvement shifts a considerable amount of power/control away from nurses while expanding the possibility of increasing their workload and affecting their workspace (ie, through increased family presence or involvement).

A Question of Control and Protecting the Patient

Nurses expressed concerns about families having too much control over goals of care and believed that this represented a more general shift in critical care that is related to “patient-centered and family-centered care.” These concerns are well documented in the literature on end-of-life issues in the ICU, ranging from nurses finding themselves “in-between” patient, family, and organizational directions62 to nurses viewing families as obstacles to performing patient wishes and best interests.17,63,64 In our interviews with nurses, when asked about how the principle of patient-centered and family-centered care affected their work, they often identified “dangerous” practices of family members directing care or insisting on care that is contrary to what the patient wants or what the care team recommends. In interviews, nurses expressed what they feared families would request or demand if asked how they would like to be involved, including “driving care” rather than being a member of the care team, “camping out” and never leaving the bedside, insisting on being present during all procedures, wanting to “know everything”—including medical information that is not relevant, and policing nursing work. As reflected in the broader literature on patient family member needs,65–71 we also found that informational needs were the most common request conveyed by family members.

Challenges to Accepting Family Involvement

During the observations of reflexive sessions and interviews, it was apparent that nurses had a high degree of self-awareness about their practices related to families and their involvement. Many nurses in this study believed that the dangers of shifting control to families have already been realized to a certain extent, and as such, they are hesitant to forfeit their remaining control over their work/patient care space. This resistance to formalizing or fully accepting family involvement reflects the existing power dynamic in the ICU, where nurses maintain a gatekeeping role regarding their patients.14,72,73 Historically, the lack of formalized rules related to family presence and involvement has left the extent of family participation up to the nurse's discretion. The consequences of this have been well documented in the literature, in the extent of family involvement allowed varying between different nurses, as well for different families.20,38,39,41–44,49,56,57,74–77 Studies on nursing assessments of family needs in the ICU demonstrate a disparity between nursing perceptions and actual family needs,68,76,78–80 suggesting that nurses' informal assessments and assumptions may not be accurate. In our study, nurses explained that they were aware of the informal nature of these assessments, inconsistencies in the interpretation and practice of involving families, the dangers of making incorrect assumptions, and the lack of official or formal guidelines related to daily interactions with families. They nevertheless justified the value of assessing and facilitating the role of families in the ICU on a case-by-case basis, pointing to both the complexities of the environment and the variability in how families cope or interact in their clinical workspace.

Although families may experience stress based on limited involvement or restricted access to their loved ones (a well-documented concern81), perhaps the most problematic aspect of the “informal assessment” of families is the risk of implicit bias. In their systematic review of implicit bias among health care professionals, Fitzgerald et al82 found that, “almost all studies found evidence for implicit biases among physicians and nurses. Based on the available evidence, physicians and nurses manifest implicit biases to a similar degree as the general population.”13 Implicit bias related to race and ethnicity was found in multiple systematic reviews, including in the literature on ICU clinicians and end-of-life care.83,84 The dangers of implicit biases would seem to persist in the ICU context where access remains discretionary and informal in the hands of health care professionals.

Although our findings suggest that nurses justify the need for this gatekeeping role (ranging from protecting the patient, their own autonomy, workspace, and maintaining professional boundaries), the informality of the decision-making process related to family involvement risks disadvantaging family members who may not be able to advocate for themselves, whether due to language barriers or socioeconomic marginalization. Not all families are aware of the possibilities for their involvement, and particularly in cases where educational, power, or language barriers exist. In these cases, it is again often up to the bedside nurse to inform or invite the family to participate. One striking theme that underlies this finding is the notion that family involvement is not an integral or critical aspect of patient care but rather helpful in particular cases or under specific circumstances. In other words, it reflected a provider-centric notion of patient-centered care homologous to findings from Olding et al. in their scoping review of family and patient involvement in ICUs.21 This view of family involvement as provider centric and therefore discretionary—especially in the ICU when the family is often a proxy or support for a patient who may be sedated and/or intubated—gives nursing staff considerable power in patient care.

The COVID-19 pandemic has heightened the challenge of patient-centered and family-centered care because of public health and safety measures, thus severely limiting involvement in care. The almost complete elimination of “visitors” in ICUs during the pandemic has created an opportunity for an awareness of the vital role family members play in critical care. These challenges highlight the role of frontline health care providers in determining and facilitating appropriate forms of involvement in a context with additional barriers. The SARS epidemic in Ontario had a similar effect of restricting visitor policies in 2003, even after concerns over infection were greatly reduced.59 In the postpandemic period, it will become crucial to acknowledge and strive to overcome these barriers as families of patients are reintegrated in the hospital setting and patient care.

Strengths and Limitations

A strength of this study was the use of a collaborative approach of working with local implementation teams at each ICU, allowing them to adapt the tool and its implementation in ways that are culturally appropriate. The ethnographic observation of the reflexive sessions also provided an opportunity to triangulate focus group type discussions with individual interviews. This study also used a thematic content analysis which allowed the researchers to observe themes in the data minimizing the imposition of preconceived ideas. Although we used an interview schedule that outlines areas of discussion, the timing of the reflexive sessions before interviews allowed us to further incorporate themes raised through the discussion among nursing staff. The independence of the researcher to the ICU unit was also a strength because it provided an assurance of objectivity for staff participating in the study.

There are limitations to this study. Because of the role of the implementation team in organizing reflexive sessions, there was less uniformity across the two sites. Although this was in itself a form of data for the larger study (from which this article focuses on one aspect), it led to an uneven distribution of reflexive session and interview participants across the two sites. As a result, the data analysis did not focus on the variables such as “university” versus “community” hospital. Another potential limitation was the influence of the implementation team members (who are known ICU staff) to the participants during the reflexive sessions. Again, this was a dynamic that was thoroughly discussed by the implementation team (itself a part of the ethnographic data in the broader study), but this could have biased participants in what they believed comfortable discussing. Finally, this article discusses a subset of data from a larger study, and because of space limitations, we chose to focus on the perspectives of ICU nursing staff. Results from the broader study—including family member perspectives, the document analysis of the family involvement records, and ethnographic observation of the implementation team and process—remain a topic of future publications.

CONCLUSION

In this study, the implementation of a FIT into two Ontario ICUs revealed that nurses were uncertain about the nature and extent of empowering family members to define and decide their involvement in their loved ones' care. Ongoing tensions about what appropriate family involvement should be stemmed from professional concerns about the quality of clinical care of the patients and the struggle to balance that against the nature of family involvement in the daily care of the patient. Additional research that includes family member perspectives on their experiences in the ICU and, particularly, how language and socioeconomic barriers could affect their opportunities for family involvement is needed to illuminate the impact of the informal rules of health care professionals on family involvement in ICU patient care. This also points to the need for understanding and incorporating nursing concerns into interventions related to family involvement to best optimize facilitation by heath care professionals. A deeper understanding of this dynamic could then provide opportunities for tailored continuing professional development for health care professionals within the ICU to assist them in navigating their own perceived clinical care needs as providers, alongside the perceived needs of patient and family involvement in ICU care.

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Keywords:

ICU; patient-centered care; family-centered care; family involvement; critical care; continuing professional development

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