First Nations members’ emergency department experiences in Alberta: a qualitative study

Abstract

Objectives

In Alberta, First Nations members visit Emergency Departments (EDs) at almost double the rate of non-First Nations persons. Previous publications demonstrate differences in ED experience for First Nations members, compared to the general population. The Alberta First Nations Information Governance Centre (AFNIGC), First Nations organizations, Universities, and Alberta Health Services conducted this research to better understand First Nations members’ ED experiences and expectations.

Methods

This was a participatory research project. Elders selected topics of focus through discussion with the research team, and approved our method of data collection. Sharing circles were held in February 2018 with Elders, First Nations patients, healthcare providers and health administrators from across Alberta. We analyzed data using the Western approach of thematic analysis, with review by two Indigenous team members. AFNIGC is custodian of the research data on behalf of Alberta First Nations, and approves publication of this work.

Results

Forty-six persons participated in four sharing circles lasting between one and a half and three hours. Findings included First Nations patients’ understandings of ED work, limited access to primary care services driving ED use, expectations of different treatment in ED based on race, experiences of racism, concerns about interactions with Children’s Services, healthcare avoidance, and avoiding specific hospitals. Equity approaches were identified as key to improving First Nations patients’ ED experiences.

Conclusions

Bringing First Nations perspectives to Western understandings of ED care is an important step toward identifying required improvements in the health system for better patient experiences and outcomes.

Résumé

Objectifs

Les membres des Premières Nations en Alberta consultent un médecin au service des urgences (SU) presque deux fois plus souvent que les non-membres des Premières Nations. Par ailleurs, d’après des publications antérieures, l’expérience des membres des Premières Nations au SU est différente de celle de la population en général. L’Alberta First Nations Information Governance Centre (AFNIGC), des organisations des Premières Nations, des universités et les Alberta Health Services ont donc joint leurs efforts pour entreprendre une recherche afin de mieux comprendre l’expérience des membres des Premières Nations au SU ainsi que leurs appréhensions.

Méthodes

Il s’agit d’un projet de recherche participatif. Des aînés ont choisi les sujets de discussion après échange de points de vue avec l’équipe de recherche, et ont approuvé la méthode de collecte de données. Des cercles d’échange d’opinions ont été organisés en février 2018 avec des aînés, des patients des Premières Nations, des fournisseurs de soins et des gestionnaires de services de santé de partout en Alberta. Nous avons analysé les données en utilisant l'approche occidentale de l'analyse thématique, avec examen par deux membres de l'équipe autochtone. L’AFNIGC s’est fait le consignataire des données de recherche au nom des Premières Nations de l’Alberta et a approuvé la publication du travail de recherche.

Résultats

Quarante-six personnes ont participé à quatre cercles d’échange de points de vue, dont la durée a varié d’une heure et demie à trois heures. Les résultats incluent la compréhension du travail des urgences par les patients des Premières nations, l'accès limité aux services de soins primaires qui conduit à l'utilisation des urgences, les attentes d'un traitement différent aux urgences en fonction de la race, les expériences de racisme, les préoccupations concernant les interactions avec les Services pour Enfants, l'évitement des soins de santé et le fait d'éviter certains hôpitaux. Les approches axées sur l’équité ont été jugées essentielles à l’amélioration des expériences des patients des Premières Nations aux urgences.

Conclusion

Intégrer les perspectives des Premières Nations à la compréhension occidentale des soins à l'urgence est une étape importante vers l'identification des améliorations requises dans le système de santé pour de meilleures expériences et de meilleurs résultats pour les patients.

Background

To better understand First Nations members’ emergency department (ED) experiences in Alberta, First Nations and non-First Nations researchers conducted a collaborative qualitative study.

Significantly worse health outcomes for First Nations members are widely reported in both acute and chronic medical conditions [1, 2]. These result from social, political and economic inequities as well as inequities in healthcare service delivery. Colonialism and racism are recognized as pervasive issues impacting First Nations health [3–6], and the Truth and Reconciliation Commission has specific Calls to Action for working toward reconciliation within health systems [7].

EDs are an important resource for First Nations healthcare. First Nations members in Alberta visit EDs at almost double the rate of non-First Nations people [8]. Within the academic literature, differences in ED experience for First Nations members in Alberta [9] and in Canada [10–12] have been demonstrated compared to the general population. Canadian and international studies have documented higher rates of leaving without being seen for Indigenous populations [13–16], which may indicate dissatisfaction with care. Qualitative research on this topic is limited, but documents how First Nations members’ decisions about when, and even whether, to seek ED care are impacted by anticipation of negative provider assumptions about them based on their race [9], and experiences of marginalization in primary care [12]. Our study builds on this limited qualitative literature. Our work differs from previous studies in that it was provincial in scope rather than being conducted in a particular hospital or only a few hospitals, and brought emergency practitioners and First Nations persons together in dialogue through sharing circles (as described under methods, below).

This research respects both First Nations and Western ways of knowing and doing [17–19]. Indigenous research paradigms provide us, in particular, with an understanding of research as an ethical practice that should make a positive difference in the world and be conducted with respect to serving the goals of participating communities [17, 20]. The project upholds the principle of Ethical Space, which recognizes the relationship between our separate but historically interrelated peoples, as articulated by Cree scholar Willie Ermine [18]. Principles of Ownership, Control, Access to and Possession of (OCAP) [21, 22] were adhered to by the project. “OCAP^® is a registered trademark of the First Nations Information Governance Centre (FNIGC)” [22]. AFNIGC is custodian of the research data on behalf of the Alberta First Nations population.

Methods

Patrick McLane is a non-Indigenous researcher informed by interpretive sociological perspectives. These perspectives align with Indigenous research paradigms that recognize knowledge as relational, and that researchers are participants in the production of knowledge [17, 23]. Lea Bill is a Cree knowledge holder and Indigenous researcher who advised on all aspects of the project. Cheryl Barnabe is a Métis physician and health services researcher.

Academic researchers, First Nations health technicians, Elders and health authority staff were involved in planning qualitative data collection. A two-day provincial meeting was then held in Edmonton, Alberta. During the meeting, sharing circles were held to collect qualitative data on First Nations members’ ED experiences [24]. Sharing circles are typically utilized as a healing method in which all participants have the opportunity to speak without interruption. Participants sit in a circle and are invited by a facilitator to speak in turn to the topic of the circle. A facilitator ensures respectful interactions by outlining First Nations protocols to be observed and reminding participants of them as necessary. For instance, in our circles, participants were asked not to question one another’s experiences, were supported when expressing emotions such as sadness or frustration, and could step away from and re-enter the circle as needed. First Nations facilitators with knowledge and experience of circle facilitation were purposely selected to lead the circles (and included Lea Bill). Questions and topics for discussion in sharing circles were identified during planning meetings with Elders and community members. Lea Bill created a graphic displaying these topics to guide sharing circle discussions (Fig. 1).

Fig. 1

Graphic of ED experience topics to guide sharing circles

Those involved in planning this meeting invited colleagues who were known to have a professional or personal interest in First Nations ED care. First Nations health directors invited community members and Elders to participate.

The circles included both First Nations and non-First Nations persons, so that differing perspectives and experiences could be shared in dialogue. Research team members participated in sharing circles as a “dialogic approach to gathering knowledge that is built upon an Indigenous relational tradition” [25].

On the first day, three concurrent sharing circles were held, while on the second day all attendees participated in a single larger circle. The circles lasted between 1.5 and 3 h, and were audio-recorded and transcribed. Following data collection, the lead author used the Western approach of thematic analysis to code the data inductively with descriptive codes as a means to display the data [26, 27]. Generic thematic analysis was chosen because it is not tightly linked to a specific qualitative research tradition [28], and so less likely to introduce assumptions that are unknown to or at odds with Indigenous research perspectives. Coding was conducted in Nvivo [29]. First Nations team members reviewed transcripts and the coding framework. Following discussion among team members, codes speaking to common issues or related to one another were grouped together by the first author. The first author then reconsidered data within these groups in the context of transcripts, and interpreted them as making up larger themes that are reported in the results section. Wording used to describe final themes and in tables of results were refined collaboratively.

As previously described by Cameron [9], participation of First Nations team members is essential to elaborating upon First Nations concepts and contexts not understood by Western team members. Analysis by Western and First Nations team members also aligns with validation of data through triangulation of distinct life experiences and worldviews [30, 31]. To enhance the rigour of the analysis, member checking [30, 31] was performed by reviewing findings with Elders and First Nations health directors. In addition, meeting participants were invited to provide comments on a participants’ report of study findings. Having participants review our reporting and interpretation of the data enhances the trustworthiness of our findings, as participants confirmed that we had not misrepresented the meaning of their words.

Ethics approval was received from the University of Alberta Health Research Ethics Board. Participants signed consent forms and completed demographic questionnaires. Participation was voluntary. The research team agreed not to reproduce direct quotations except with review and permission from the speaker, to avoid expropriating Indigenous knowledge.

Results

In addition to research team members, 46 attendees participated in sharing circles, of whom 40 completed demographic questionnaires (see Table 1 (Source: The Alberta First Nations Information Governance Centre and Emergency Strategic Clinical Network. Engaging First Nations Knowledge Holders, Health Care Providers and Technicians on First Nations Members’ Emergency Department Experiences and Concerns, February 12–13, 2018.)). Fifteen Elders attended, representing ten Nations and three Treaty Areas. First Nations cultural groups represented included Cree, Blackfoot, Dene, and Stoney Nakoda. Participants were from both small rural communities that are several hours drive from major cities and served by community hospitals, as well as from major cities. Physician and nurse participants practiced primarily in large urban EDs, although two First Nations physicians practiced in small community hospitals. Although team members and health directors were free to invite anyone to the meetings, recruitment through these contacts resulted primarily in health providers, administrators or Elders with expertise in health matters attending the meeting. 11 participants reviewed the participants’ report (6 First Nations (3 Elders); 5 non- First Nations). All commented that the report reflected their recollections of and experience in the circles.

Table 1 Participant demographics

Sharing circle themes Sharing circle results are organized according to the topics in the graphic that was used to guide discussion (Fig. 1) and presented in Tables 2, 3, 4 and 5 (Source: The Alberta First Nations Information Governance Centre and Emergency Strategic Clinical Network. Engaging First Nations Knowledge Holders, Health Care Providers and Technicians on First Nations Members’ Emergency Department Experiences and Concerns, February 12–13, 2018.). We summarize and elaborate on the themes presented in the tables in text below. We generally do not present direct quotations because, as noted above, our ethics approval and agreements permit this only with permission and review by the participant quoted. Over-reliance on quotations from participants who reviewed the report could raise the possibility of misrepresenting the data overall.

Table 2 Knowledge about the emergency department

Table 3 Experiences

Table 4 Expectations

Table 5 Changing the experience

Knowledge about the emergency department

First Nations participants understood ED providers’ work to be stressful, and noted that problems that can be encountered by First Nations patients are not unique to EDs. Nonetheless, one participant noted that patients in the ED are feeling especially unwell and vulnerable, and thus have a reduced ability to advocate for themselves.

First Nations participants also spoke about the social determinants of health that impact First Nations ED visits. They spoke about overcrowding in homes, lack of water services for many First Nations houses, and individuals’ loss of connections to culture, language and family.

By contrast, where non-First Nations participants expressed an understanding of EDs as part of a larger context, this was framed in terms of problems in EDs being driven by issues in other aspects of the healthcare system, such as a lack of primary care. First Nations participants confirmed that reasons for visiting EDs include lengthy wait times to see primary care providers and times when primary care is not available. One participant related service availability to jurisdictional issues, noting that because First Nations have a nation-to-nation relationship with the Crown and Federal government, provincially provided services are largely unavailable on reserve.

Experience

Participants described positive and negative experiences of care in ED. First Nations participants’ stories of negative experiences that were specific to them as First Nations people related to stereotyping and fears of child apprehension.

First Nations members spoke of experiences of racism, both within and outside the ED. Several First Nations participants spoke of being accused, or seeing their loved ones accused, of “drug seeking” or presenting to the ED to obtain narcotics. They related this to stereotypes about First Nations people, in some cases using the term profiling. First Nations and non-First Nations healthcare providers supported the idea that stereotyping occurred, although in general terms and without giving specific examples.

First Nations speakers also noted that it can be difficult to tell if one is experiencing racism. One participant described racism as a “ghost,” noting that when a negative experience with a non-Indigenous healthcare provider occurs, First Nations members are often left wondering if it had to do with race and second-guessing their perceptions of racism. This sentiment was returned to several times throughout the course of the sharing circles. For instance, another speaker conveyed an experience of being left alone in ED for a long time before it was realized she was “quite sickly” and said, “I am not sure if that was racism or if there was just way too many people in the ED.”

Two First Nations participants spoke powerfully about concerns that ED encounters would lead to interactions with Children’s Services and result in apprehension of, or pressure to “give up,” their children.

Expectations

Concerns about profiling impacted First Nations participants’ expectations of care and care seeking. One First Nations speaker noted being accused of drug seeking, and that she has become more “guarded” in what she says in the ED. Another described feeling the need to state her high status profession to mitigate profiling.

First Nations participants also described healthcare avoidance and avoidance of specific hospitals. One participant told the story of a brother who had recently passed away and who had not been to the hospital because he did not appreciate the questions asked there. First Nations speakers from different geographic areas in the province related that they avoid specific hospitals in favour of others on the grounds that treatment of First Nations patients is better in some facilities than in others.

Changing the experience

A number of First Nations participants described a desire and expectation that First Nations people would resolve First Nations issues. First Nations participants expressed pride in First Nations health professionals and youth. They spoke of the need for education and noted that First Nations youth are becoming healthcare professionals precisely to address the kinds of issues outlined above. First Nations participants also spoke of efforts to prevent illness as a way to avoid negative ED experiences. Several participants talked about prevention as a way to reduce pressure on “understaffed” EDs.

Several participants expressed appreciation for the Indigenous hospital liaison positions that exist in many hospitals in the province. However, one participant who had formerly held the role was critical and noted that while the position is beneficial, it is also overwhelming and a “burnout” job. Another speaker related a need for better coordination between community health organizations and hospitals, particularly around discharge planning.

Several speakers stressed a need for providers to have education about residential schools, intergenerational trauma, and the history of colonialism in Canada. One participant asked how providers could be educated so that they better understand the environments of First Nations patients. She noted that providers would thus be better able to understand which determinants of health are within First Nations patients’ control and which they cannot control.

Other participants expressed empathy for providers who they felt could be mistaken for behaving in a racist manner, or not know they were doing so, when from the providers’ perspective they are treating a First Nations patient the same way they would treat any patient. One First Nations participant noted that, from a providers’ perspective, following a “checklist” of best practice would be the “opposite of discrimination.” She asked how providers could come to understand that personalized approaches might be needed for persons who have experienced past trauma or had negative experiences with the healthcare system.

As an example of adapting the healthcare system to First Nations patients’ needs, several First Nations speakers said that, given widespread stereotypes about First Nations people and substance use, time must be taken to explain why questions about drugs and alcohol are asked in each case, and how they are medically relevant. Other speakers noted that simply explaining that these questions are routinely asked of all ED patients might help First Nations patients feel they are not being profiled based on their race.

Another example of adapting care to First Nations patients’ needs relates to language. After reviewing an initial draft of study findings, two Elders independently noted the need to support Indigenous language speakers in ED. For instance, by ensuring that patients facing language barriers are accompanied to hospital by bilingual companions.

First Nations and non-First Nations healthcare providers talked about a need to honour their responsibilities and professional oaths to provide quality care to all. Several non-First Nations providers expressed a desire to “speak up” more when they witnessed colleagues engage in discriminatory behaviour.

Many First Nations participants talked about the two-day event itself as beginning to address issues of First Nations ED care insofar as it involved First Nations members and healthcare providers sitting together to share experiences and to build common understandings. One First Nations participant called on meeting attendees to work together to address racism, arguing that approaches that require proof that racism has occurred in a particular instance have not worked.

Discussion

First Nations participants proposed strategies for changing emergency care for the better. Healthcare providers can be cognizant of these strategies in their practice and quality improvement work.

Reports of First Nations patients having positive experiences of emergency care and empathy for providers have not been key findings in previous literature. Non-First Nations healthcare providers may better relate to First Nations patients if they know that many First Nations people appreciate the challenges of ED work and often have good experiences in ED.

Nonetheless, as has been previously reported, First Nations patients have significant concerns about racism and profiling in ED [9, 12]. The presence of providers within the sharing circles who could corroborate the existence of race-based discrimination further validates the existing literature, and was not a feature of previous ED research. Patients’ concerns about being treated unequally may help to explain quantitative findings of higher rates of leaving ED without being seen for Indigenous patients compared to other groups [13, 14, 16].

First Nations speakers desired equity-based approaches tailored to their unique contexts. This aligns with the concept of equity-oriented care as developed by Ford-Gilboe and colleagues [32]. First Nations speakers’ specifically noted that questions about drug and alcohol use may impact First Nations patients differently given their contemporary realities and experiences of discrimination. They suggested that providers take time to explain the medical relevance of questions about substance use.

More generally, equity approaches can relate to techniques of individuation [33]. That is, gathering information specific to the individual patient as opposed to relying on cognitive shortcuts on “types” of patients, which can often be useful in fast paced practices but will be problematic if racial stereotypes are relied upon.

Participants also noted that when they have a negative experience, they are often uncertain about whether it is due to racism or not. This finding is related to what has been termed “stereotype threat” [34] wherein a minority members’ awareness of stereotypes and prejudices against their group are activated by some feature of an interaction (e.g. questions about substance use). Stereotype threat has been shown to impact minority members’ experiences, behavior and communication regardless of whether majority group members on the other side of a particular interaction are motivated by such stereotypes or prejudices [34]. Healthcare providers may wish to reflect on the fact that from the First Nations patient perspective, any difficult interaction or negative experience could be driven by racial bias and that this compounds the stress experienced by First Nations patients in already stressful emergency care environments. Attempts to prove that racism has occurred or not occurred in a particular instance (as may be expected in patient complaint processes) may further magnify this stress, and are potentially at odds with First Nations perspectives on racism as a widespread issue.

An understanding of racism as a systemic factor [35–37] suggests that, rather than attempting to deal with individual instances of discrimination as they arise, addressing racism may be achieved by taking for granted that racism impacts health and healthcare, and implementing policies and practices that support equitable care [36]. This should involve partnerships with local Indigenous communities.

An understanding of colonialism as an ongoing and systemic determinant of health that impacts Indigenous peoples should accompany efforts to address anti-Indigenous racism [38] as the two phenomenon are intertwined. Useful strategies for enhancing health care equity for Indigenous peoples that appropriately focus on colonialism and racism have been described within primary care by Browne and colleagues, [39] and could, in many cases, be adapted to ED settings. Browne and colleagues offer an important reminder that efforts to improve healthcare for Indigenous peoples should not focus on the relatively comfortable issue of cultural difference, but on differences in power and privilege (that have been historically supported by ideas about cultural, and racial, difference). This is reinforced by our data, where First Nations participants did not ask primarily for recognition of their cultures within the ED setting, but centred discussions on equity approaches, contemporary determinants of health and healthcare access.

As a research team, we also suggest that health systems should create safe spaces and time for providers to engage in collective reflection and learning. This may allow providers to self-assess and correct biases impacting the care they provide [40].

Our event provides an example of how to provide space and time for reflection. The presence of First Nations physicians and professionals within the sharing circles and as speakers at the event provided positive counter-examples against negative stereotypes of First Nations persons [41], while participation in the sharing circles worked to educate providers about First Nations members’ contemporary realities and history.

Future research in this area could productively employ survey methods to determine the prevalence of concerns raised by First Nations participants in this project (e.g. concerns about interactions with Children’s Services). Interventional research could provide education to ED healthcare providers, together with observational or survey methods to determine the impacts of provider education on the quality of particular care interactions between providers and First Nations patients.

Limitations

Provider participants were self-selected. It is unlikely that the provider participants are representative of ED providers generally. First Nations participants were largely health technicians or Elders with knowledge of healthcare. First Nations members without such formal roles may have reported different experiences in ED or suggested other strategies for improving ED experiences. Limitations on our ability to reproduce direct quotations, although accepted to enhance trust with community partners and safeguard Indigenous knowledge, prevent results from being as impactful as might otherwise have been the case.

Conclusion

Healthcare providers may wish to consider that the First Nations participants in this study expressed empathy for them, and that negative experiences in the ED create uncertainty for First Nations patients about whether they are experiencing racism. Those conducting quality improvement activities in ED for First Nations patients may choose to forego asking whether or how often racism occurs in their setting, and instead assume that racism impacts First Nations patients. Doing so may facilitate provider learning and organizational collaborations with First Nations partners.