Background

Patient and family-centred care, communication, and relationships in the intensive care unit

Patient and family-centred care (PFCC) is a paradigm that recognizes the benefits of a mutual partnership between patients, their loved ones, and health care providers.1 In the PFCC paradigm, the patient and their loved ones are empowered and supported to make decisions and define successful outcomes based on what is important to them.2 In the intensive care unit (ICU), best practices for PFCC include family presence and participation in bedside care; routine communication to engender trust and reduce conflict; and the use of active listening, expressions of empathy, and statements of support during communication with families.3,4

Although effective communication underpins much of PFCC, ICU-specific factors make communication particularly challenging in the critical care setting. The complexity of care, number of health care providers involved, nature and pace of the decisions, and the emotional and physical toll of having a loved one in critical condition are barriers to effective communication in the ICU.5 Intensive care unit clinicians must attempt to overcome these barriers and create space for empathetic, respectful, and collaborative communication with patients and their loved ones, in a manner that facilitates trust.6 Ineffective communication in the ICU may hinder relationship development by creating bias, distrust, and social distance.5 Clinicians have skills in both communication and in therapeutic relationship building, which has the potential to improve the experience of patients and positively affect outcomes.7 Essential conditions for therapeutic relationship building, such as a present, genuine, receptive, collaborative, and committed health care provider, can provide a foundation for engaging patients and their loved ones in PFCC.7,8,9

Equity, Diversity, Decolonization, and Inclusion

Diversity is inherent in the presence of individual differences that shape lived experiences (e.g., race, gender, ethnicity, place of origin, disability, sexual orientation, age).10 Intersectionality refers to the overlapping nature of an individual’s multiple identities that interact to shape distinct lived experiences of social oppression, privilege, and positional power (e.g., race and gender interact so women of colour experience higher levels of oppression perpetuated by systems of power than either men of colour or White women do).11,12 Inclusion is an ongoing process of building welcoming, respectful, and affirming spaces to support equity or parity in policy, process, power, access, opportunity, and outcomes.10 Decolonization is a process of deconstructing systems that prioritize settler ideologies, thoughts, and approaches over those of Indigenous culture, traditional ways of knowing, empowerment, and self-determination across all systems, including health care.13,14,15 The acronym EDDI refers to the interconnectedness of process and pursuit of Equity, Diversity, Decolonization, and Inclusion.

Persons representing diverse intersectional identities bring practical, contextual, and historical experiences and realities that can have implications for communication and trust building. For example, Indigenous, Black and people of colour (IBPOC) populations may have experienced systemic racism and oppression, intergenerational trauma, the long-term effects of colonization, and inequitable access to housing, sustainable food, and health care.16,17,18 For patients and loved ones whose primary language is not English, communication can impact their experience and mental wellbeing during their ICU stay.19,20,21,22,23,24,25,26,27,28 Diversity in culture, language, and spiritual or religious beliefs can influence expectations of critical care patients and their loved ones.19,20,21,23,24 These factors with which diverse patients and loved ones come into health care systems may require specific consideration to create a safe and affirming space for communication and trust building.5,29

Health care systems have been developed on a foundation of colonial white supremacy and subsequently, systemic racism, which often negatively impacts IBPOC populations’ access to appropriate or even adequate health care. Individuals who are negatively impacted by health disparities and inequity have more complex health needs and often delay seeking medical attention due to racism, discrimination, stigma, sexism, and bias.30,31,32 Indigenous populations in Canada continue to be disproportionately affected by colonial health care structures.32

Focus of the current investigation

The focus of this investigation was to understand communication, connection, and relationship building in the ICU through a lens of EDDI. By understanding the intersection between PFCC and diverse identities, the ICU can become a more equitable and culturally safe space where patients and their loved ones are empowered to actively participate in shared decision-making, engage the health care team, and feel valued and affirmed.

Methods

Design thinking

Design thinking is an applied, systematic approach to problem solving whereby understanding the current reality leads to identifying real-world problems and practical solutions.33,34,35 The design thinking process consists of four stages, which are framed as questions: What is? (stage 1), What if? (stage 2), What wows? (stage 3), and What works? (stage 4). This research was conducted within stage 1: What is? of a larger design thinking project to explore how communication technology might enhance communication and connection between the patients, their loved ones, and the ICU team. In keeping with the real-world focus of design thinking, the current study leveraged a pragmatic approach to inquiry36,37,38,39 that views knowledge as transactional and constructed based on the interaction of people and their environments.40,41 The emphasis of this approach is on producing useful and actionable solutions to real-world problems. To serve diverse patients and their loved ones, accessibility, inclusivity, and cultural safety were defined a priori as foundational pillars of this project. This is consistent with the values-informed axiology of a pragmatic approach.

Data collection

Journey mapping is a tool frequently employed in design thinking that facilitates the mapping of events, actions, and processes from different perspectives.33 Following approval by the Behavioural Research Ethics Board of the University of Saskatchewan (Saskatoon, SK, Canada; 15 June 2021), we used journey mapping to understand the experiences of patients, their loved ones, and health care professionals as a patient moves in, through, and out of the ICU. In phase 1, we engaged our larger research team of knowledge users (consisting of patient and family partners, health care providers, and Indigenous scholars to identify key moments and milestones in the journey of a patient through the ICU where trust was built or threatened, relationships were affirmed or challenged, and communication was effective, ineffective, or absent [e.g., admission, crises, stabilization, discharge]). Team members engaged in phase 1 had lived experiences in ICU. We held informal discussions with the team and visually mapped ideas during the conversation. After the discussions were complete, two authors (S. S., S. K.) met to synthesize the ideas and identified 16 distinct moments. As the purpose of the synthesis was to inform the next phase of the process, the researchers focused on summarizing a robust list of moments and milestones from the visual mapping that were generated during the conversations. Notes from these discussions were circulated to the team for additions and input. After this process, we defined communication moments as an opportunity or event where information is given or received and relationship milestones as a time when there was a shift or change in trust or bond.

In phase 2, we conducted semistructured interviews guided by these key moments and milestones to better understand and explore lived experiences in patients’ ICU journey (Electronic Supplementary Material eAppendix).

Sampling and recruitment

We used maximum variation purposeful sampling to recruit participants including: 1) members of the ICU health care team, including physicians, nurses, and allied health professionals; and, 2) patients and their loved ones with diverse cultural, linguistic, sexual, gender, age, and regional (i.e., rural) identities and intersections of identities. This sampling technique was appropriate in attracting information-rich cases—participants with a diverse range of backgrounds and ICU experiences. Health care providers were recruited through e-mail invitations, posters, and social media. Patient and family participants were recruited through the Saskatchewan Centre for Patient-Oriented Research, posters in Saskatchewan ICUs, and inviting participants from a prior related study.42,43

Analysis

We used directed content analysis,44,45,46 a deductive approach to qualitative analysis, with the moments and milestones identified in phase 1 as the coding framework, with an additional code for EDDI examples. As per Hsieh and Shannon’s approach to directed content analysis, we also looked for new themes arising that were not represented in the framework.44 We aimed to 1) further define and refine the 16 moments and milestones identified in stage 1 of the journey mapping; 2) identify any additional moments or milestones; and 3) identify instances where EDDI directly or indirectly impacted the ICU journey. After immersion in the data (memos, transcripts, and audio recordings), the first two authors (S. S., J. O.) coded three transcripts together to ensure common interpretation and application of the coding framework. Then, each researcher independently coded five remaining transcripts. After coding was completed, the researchers met to review and understand intersections of EDDI with the moments and milestones. During this meeting, we critically reflected on the identification of EDDI moments in relation to our individual identities. We noticed that the context identified by the participant was often critical to understanding the intersection between EDDI and the moments and milestones. Therefore, we incorporated context into the presentation of findings. Given the deductive nature of this inquiry, our goal was to confirm that the moments and milestones were comprehensive and applicable across ICU journeys. Therefore, confirmation of the framework was achieved when more than one participant described distinct experiences related to each moment and milestone, and no new moments and milestones arose.

Results

In phase 1, we identified 16 key moments and milestones in the ICU journey where trust can be built, relationships can be affirmed, and effective communication can enhance the lived experience of patients and their loved one(s): 1) initial interaction(s) between any member of the ICU team and the patient/loved one(s); 2) transition into the ICU; 3) moments when the loved one(s) were asked to step out of the room; 4) moments when the patient(s) needed to be relocated; 5) loved one(s)’ experience during the period of patient stabilization; 6) huddles with health care team (e.g., morning rounds, shift change, hand-off); 7) moments when a patient/loved one requests one-on-one communication with a member of the health care team (e.g., looking for information or insight); 8) patient/loved one(s) gives critical health information to ICU team; 9) ICU team gives health information, education, and plan to patient/loved one(s); 10) decision-making junctions (i.e., opportunity for shared decision-making); 11) moments of connection (e.g., physical touch, attention to comfort—emotional and physical, emotional engagement); 12) moments of acknowledgement and respect for identity and values; 13) moments where patient/loved one(s) feels safe and comfortable to be vulnerable (e.g., ask to pray or smudge, request a dreamcatcher, grieve openly, ask for what they need); 14) moments where health care team connects and is vulnerable with the patient/loved one(s) (e.g., share aspects of their identity, personal experiences); 15) moments leading up to and including transition from the ICU to another hospital ward and/or home (e.g., transition planning); and 16) coordination of follow-up communication and care with community-based supports (e.g., family doctor, specialist[s]), patient(s), and/or loved one(s).

Thirteen health care providers, patients, and their loved ones participated in journey mapping interviews (phase 2). Participant characteristics are presented in Table 1. We defined and refined the 16 moments and milestones identified in phase 1 and identified instances where EDDI directly or indirectly impacted the ICU journey (Table 2). No new moments or milestones emerged in phase 2. However, throughout the ICU journey, participants described how the COVID-19 pandemic and technology interact with equity, inclusion, communication and relationship building. To ensure these ideas were captured, we inductively created two new themes and developed working definitions for each (Table 3).

Table 1 Journey mapping interviews: participant characteristics
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Table 2 Moments of communication and relationship-building in a patient’s ICU journey
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Table 3 Emerging themes from phase 2 analysis
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All participants explored the interaction between diverse identities and the lived experience of moving through the ICU. Participants described impacts and implications of having, accommodating, and affirming the following identities (listed alphabetically):

  • Access to technology, technological skills

  • Age

  • Body size and weight

  • Cognitive-communicative ability and/or impairment

  • Cultural and religious beliefs and values

  • Education

  • Family structure (e.g., parents with children)

  • Gender

  • Geographic location (e.g., residents of rural or remote communities)

  • Health literacy

  • Indigenous identity

  • Linguistic proficiency (e.g., English language learners)

  • Mental health and addictions

  • Sexual orientation

Affirming identity can build trust, relationships, and communication as illustrated by Physician 1 describing their experience with an LGBTQ2S+ couple:

… her partner came up to me … and she said, “You know what? I think we have to stop.” She said “It’s not going anywhere … she’s suffering … she's not going to get better to a point where you know she would find it meaningful. I think we have to just make her comfortable”… I really appreciated that moment … she [the partner] was able to take some of the information that I was giving her … And put it into context of someone who loves and knows this person

Affirming identity can build trust and decolonize the ICU journey for Indigenous patients and their loved ones. This can include creating opportunities for patients and their loved ones to embrace traditional healing and beliefs, as is shown in one Loved One 3’s example about the importance of the patient wearing a protection prayer pouch while in the ICU:

… my first experience … was a good one … we were given these little pouches. Sometimes it's for like protection, like a protection prayer pouch. And when I was with my loved one in [City 1], they allowed that protection pouch to be around my loved ones neck and be close to him … they should be open with culture and beliefs and allow things like that, because … it makes the ones that love the person feel more comfortable. And especially if that person is into their beliefs. Them too. It'll be good for them too.

In contrast, not affirming identity can have damaging effects that break trust and relationships, as Loved One 3 describes another experience at another hospital where the patient was prohibited from wearing the protection prayer pouch:

… at this other hospital, it seemed like it was a problem for them … they said, “Well, he just can't have nothing around his neck because he has all these things hooked up to him.” And then I asked if I could put it [traditional protection pouch] by their bed and they said, “No, in case there's an emergency,” they don't want to … knock it over or anything like that … I felt like they were judging me … I felt like they were being racist to me … It felt like they're making up excuses or something to me. I don't know. But that's just the way I took it in.

Particularly for Indigenous patients, historical injustice and intergenerational trauma may affect patient trust in the health care team and willingness to provide information. For example, Indigenous Peoples may be unwilling to share information about familial circumstances due to ongoing fears related to the forced removal of children from Indigenous homes and communities, as is illustrated by Allied Health 3:

I think a lot of people associate social work with … taking people's children away … especially with Indigenous [peoples], … when they hear social worker, it's like … “Why are you asking about the children?” Like, “What, what do you want to know that for?” …

Discussion

Main findings

Through this investigation, we confirmed 16 key moments and milestones in the ICU journey where trust can be built, relationships can be affirmed, and effective communication can enhance the lived experience of patients and their loved one(s). We also began to understand how affirming or not affirming diverse, intersectional identities can interact with experiences throughout the ICU journey.5 Some participants identified examples of how affirming identities through principles of EDDI can improve communication, relationships, trust, and connection during the ICU journey. Some participants identified examples of how denying or negating identities could disrupt, damage, or even destroy trust and relationships during an ICU stay. These preliminary findings open the opportunity for further investigation into the ways in which affirming or not affirming aspects of identity can directly or indirectly affect the provision of PFCC.1,3,4

Given the timing of this investigation (i.e., during the COVID-19 pandemic), participants also discussed the impact of visitor restrictions and the increased workload on the ICU team on building relationships and trust in the ICU.43 Some participants identified how technology could be used to mitigate challenges related to communication. Nevertheless, some participants identified that lack of access and skill in using technology could lead to inequities. These emerging themes of COVID-19 and technology did not represent distinct points along the ICU journey, but appeared to interact with communication and relationship building in significant ways throughout the journey.43,47,48,49 Participants suggested that these contemporary, emerging themes may require recognition of EDDI lenses.

Intensive care unit health care providers should consider key communication moments and relationship milestones influenced by the context, experience, and intersectional identities of patients and their loved ones. For example, when asking information about an Indigenous person’s children, understanding the history of colonization, assimilation policies, and practices (residential “schools,” sixties scoop). Providing a culturally safe experience requires self-reflection of the positionality, privilege and unconscious biases of the health care provider and how this may affect the intersectional identities of patients and their loved ones.50,51,52

Strengths

We engaged a diverse team that included patient and family partners and health care providers to collaborate and create the foundation for this investigation in phase 1 of journey mapping. Diverse team members actively shaped the study through cocreation among practitioners, patients, and their loved ones, which is consistent with the pragmatic paradigm. This ensured our phase 2 interviews were focused and allowed for a more in-depth exploration of these moments with participants. Our exploratory semistructured interview approach in phase 2 allowed us to explore the lived experiences of the ICU team, patients, and their loved ones. Almost all of our participants described how at least one aspect of identity could impact the lived experience of navigating the ICU. This suggests that work in understanding trust, relationships, and communication in the ICU should consider principles of EDDI and the role of affirming or not affirming intersectional identities. Our partnerships with an Indigenous community-based research lab and a division of the College of Medicine dedicated to supporting health equity in education, research, service, and advocacy, facilitated engagement and ensured that marginalized voices were represented throughout this project. Work with the Indigenous community-based research lab ensured Indigenous cultural safety was considered while engaging the knowledge base of experiences of this population. We believe our pragmatic approach amplified experiences of marginalized peoples and may contribute to decolonization.

Limitations

This study is limited by the small sample of interview participants; it’s likely a larger sample would have collected a greater dimension of diverse identities. Nevertheless, our goal was to confirm and refine the framework we established in phase 1 of the journey mapping process. Our study is limited in our ability to prescribe specific actions to create safe spaces; safety is a personal experience, but by gaining greater understanding of the experiences of diverse patients and their loved ones, health care providers can adapt their behaviour in the ICU journey to increase feelings of personal safety.

Next steps

We recommend that future work should seek to apply the moments and milestones to patients, their loved ones, and the ICU team with diverse and intersectional identities and seek to understand similarities and differences between lived experiences throughout the ICU journey. Quality criteria for pragmatic research ask whether the findings produce actionable knowledge and if research participants are involved in the inquiry process.53,54 The list of communication moments and relationship milestones can be used to sensitize health care providers in creating culturally safe environments. Journey mapping personas (e.g., a patient whose first language is not English, a loved one who lives in a rural or remote area, an ICU physician) will be developed into sketch videos to educate ICU health care providers and trainees about what diverse patients may experience as they move through the ICU. For patients’ loved ones, sketch videos will identify opportunities for advocacy and engagement with the ICU health care team. Our inquiry process included health care providers, researchers, patients, and patient family members to generate moments and milestones during phase 1. Next, participants will engage in facilitated workshops in the second stage of design thinking—What If?—to envision communication technology-enabled solutions to support communication, trust, and relationships in the ICU.

Conclusion

This investigation is part of a larger design thinking project that is adopting an agile approach to problem solving to a real-world health care problem. Understanding the ICU journey is an important foundation for envisioning a future of enhanced communication and connection in the ICU. Our findings highlight that diverse intersectional identities impact communication moments and relationship milestones during an ICU journey. Health advocates, decision-makers, and government officials can use our findings to champion affirming and culturally safe communication for ICU patients and their loved ones.