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.
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.
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.
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.
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.