Identifying barriers to preventive care among First Nations people at risk of lower extremity amputation: a qualitative study
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* Tyrell Wees
* Mamata Pandey
* Susanne Nicolay
* Juandell Windigo
* Agnes Bitternose
* David Kopriva

## Abstract

**Background:** First Nations people in Canada are overrepresented among those who have undergone nontraumatic lower extremity amputation, and are more likely to be younger, have diabetic foot infections and have no previous revascularization procedures than non–First Nations populations who have undergone lower extremity amputations. We sought to identify access barriers for high-risk First Nations patients, explore patients’ experiences with health care systems and identify solutions.

**Methods:** Employing a community participatory research design, we engaged representatives from 2 communities. They assisted with research design and data analysis, and approved the final manuscript. Using a hermeneutic phenomenological approach and purposeful sampling, we conducted 5 semistructured focus groups between August and December 2021 with community health care teams and patients at risk for, or who had previously undergone, a nontraumatic lower extremity amputation.

**Results:** Patients’ (*n* = 10) and community health care providers’ (*n* = 18) perspectives indicated that barriers to health care access led to delayed care and increased complications and risk for lower extremity amputations, leading to aggressive procedures upon receiving care. Barriers to care led to negative experiences at urban centres and aggressive procedures created further distrust, leading to care disengagement and poor outcomes. Patients and providers both suggested building stronger partnerships between urban and rural health care providers, improving education for patients and health care providers and identifying innovative strategies to improve patients’ overall health.

**Interpretation:** Systemic changes, health promotional program and reliable on-reserve primary care are needed to create equitable access for First Nation patients at risk for lower extremity amputations. The study results imply that health care delivery for First Nations patients at risk for lower extremity amputations can be improved through stronger partnership and communication between urban and community providers, and continued education and cultural competency training for urban health care providers.

In Canada, lower extremity amputations were performed more than 44 000 times between 2006 and 2011. In Saskatchewan, lower extremity amputations are performed an average of 419 times per year.1 Lower extremity amputations put substantial physical, emotional and psychological stress on patients undergoing the procedure. Nontraumatic amputations most frequently occur as a result of peripheral arterial disease and diabetes mellitus and occur more frequently in the lower extremities than in the upper extremities. First Nations patients represent 23% of all patients undergoing lower extremity amputation in Southern Saskatchewan, while only representing 10% of the total population of Saskatchewan (W. Usama and colleagues, Saskatoon, unpublished data, 2019). First Nations populations undergoing amputation were more likely to be younger, have diabetic foot infections, have no previous revascularization procedures and live in First Nations communities (W. Usama and colleagues, Saskatoon, unpublished data, 2019). Comparatively, non-First Nations populations undergoing lower extremity amputation in the same time period were more likely to be older, have chronic limb-threatening ischemia and have previous revascularization procedures (W. Usama and colleagues, Saskatoon, unpublished data, 2019). Limited primary care access, inadequate diabetes management, geographic location, racism in health care settings and social determinants of health influence First Nations peoples’ health care access, leading to diabetes-related complications and poor wound management, increasing the risk of lower extremity amputations.2–5

Amputations confer a tremendous burden on patients, families and the health care system. Patients who have undergone lower extremity amputations often describe tremendous difficulties with mobility, self-image and societal stigma, which affects their personal and professional lives.2 Patients with lower extremity amputations often require lengthy in-hospital stays, readmissions for complications and exacerbation of their comorbid conditions.3–5 With adequate patient education, chronic disease management, intensive vascular care and access to multidisciplinary teams, wound clinics have been observed to prevent up to 50% of amputations.6 A high incidence of lower extremity amputations among Canada’s First Nations populations motivated this study.4,7–9 We sought to identify health care access barriers among First Nations patients at risk of amputation or who had undergone amputation for diabetic foot ulcers in Southern Saskatchewan, explore experiences of patients who had undergone amputations for diabetic foot ulcers and those who sought care for diabetic foot ulcers and identify potential solutions to reduce health care barriers.

## Methods

### Community engagement

In a previous study, people with lived experiences in addictions and chronic disease, along with the First Nations leadership, highlighted the need for enhanced health care services within the community.10 In partnership with clinicians from the nearest urban centre, Regina, Saskatchewan, a community-led and partnered health care model, referred to as Wellness Wheel Clinics was developed and implemented in-community to address access barriers.10 Approval from the community Chief and Council, enacted through Band Council Resolution, and Industry and First Nations government funding, supported the Wellness Wheel Clinic’s development and implementation.10 In addition, using a community participatory research approach,9,10 a research partnership was developed between a health authority research scientist (M.P., female), community health care providers, patients with lived experiences (peers) and urban clinicians. A collaborative decision was made to employ research as a tool to identify health needs, and address health care access barriers moving forward. M.P. and a registered nurse (S.N., female) worked on 2 subsequent community-partnered projects to identify community health priorities and leverage study results to address health care delivery gaps. As part of accountability, aggregate data highlighting emerging health issues are shared with communities, which also informs the research direction. We carried out this study to explore the high incidence of lower extremity amputations in this geographic region.

### Study design

In partnership with community representatives, a medical student (T.W., male), M.P. and S.N. finalized the research design and focus group questions. A collective decision was made to explore the perspective of First Nations health care providers and patients residing in First Nations communities. We considered a hermeneutic phenomenological approach appropriate to systematically document the lived experiences of both patients and health care providers.11 This approach acknowledges that cultural and historic backgrounds shape individuals’ beliefs and worldviews, leading to unique lived experiences.11–13 This approach allows researchers privy to those unique lived experiences to gain a comprehensive idea of the phenomena through interactive discourse.11–13 This method also called upon researchers to acknowledge and reflect on their perceptions, shaped by their experience of working for and receiving services from Western health care systems, which might influence interpretation of the current phenomenon.11–13 T.W. completed the Tri-Council Policy Statement-2 certificate, reviewed related literature, OCAP (Ownership, Control, Access, Possession) principles and Indigenous research methodologies.

### Setting and participants

We engaged 2 First Nations communities with a combined estimated population of 5715 people, located about 130 km from Regina. We used word of mouth and displayed recruitment posters at the community health centres for participant recruitment. Using a purposeful sampling strategy, community representatives recruited community health care providers and people living with diabetes or who have experienced diabetic foot ulcers or amputations from the participating First Nations communities between August and December 2021.

### Data collection

All participants received the focus group questionnaire and signed informed consent (Appendices 1 and 2, available at [www.cmajopen.ca/content/11/5/E906/suppl/DC1](http://www.cmajopen.ca/content/11/5/E906/suppl/DC1)). The facilitators, acknowledging their affiliation with Western health care institutions, informed participants that research as a tool was employed to gather information on factors affecting lower extremity amputations and strategies for improvement. T.W., M.P. and S.N. each facilitated at least 1 group and took notes during other groups, along with a community note-taker. Through use of a conversational approach14 and open-ended questions, participants’ experiences with diabetic foot ulcers, amputations, and health care access barriers were explored.13 The facilitators compiled the main discussion points that emerged after each focus group and shared it back with the participants to ensure that their views were recorded accurately.

### Data analysis

We transcribed all audio-recorded data from focus groups verbatim and analyzed transcripts by employing QSR NVivo 9.15 Following the qualitative methods described by Miles and colleagues,16 M.P. read transcribed data line-by-line and broke it into small data chunks. Data chunks with similar meanings were organized under 183 base-level codes in the first coding cycle. M.P assigned an appropriate descriptive title to each base-level code, and consulted the interview guide and facilitators’ notes to ensure all discussion points and any new emerging ideas were included in this coding cycle. Base-level codes with similar ideas were then grouped under 14 intermediate codes15 in the second coding cycle. M.P. employed diagrams and figures to identify relationships between the intermediate code and grouped them into main themes. The data analysis was extensively reviewed by other researchers on the team and community representatives to ensure that researchers’ personal and professional biases did not overpower interpretation and that the data analysis truly reflected the voice of the community members. We incorporated all feedback.9 The final manuscript was approved by community representatives and they serve as coauthors.

### Ethics approval

The Saskatchewan Health Authority Research Ethics Board (REB-20-126) approved the study and health managers from participating communities provided letters of support approving the study.

## Results

We conducted 4 focus groups with community health care teams from 2 communities (*n* = 18), and 1 with patients (*n* = 10). Focus groups were 90–135 minutes long. Members of community health care teams all worked and resided in communities, and 16 (89%) were females. All patients had been living with diabetes for more than 3 years (excluding 1 participant who did not have diabetes) and were aged 45 years or older; 6 (66%) were males and 3 (30%) had diabetic foot ulcers and/or amputations.

Three main themes that emerged from the data analysis were barriers in health care access, impacts on health outcomes and solutions. Figure 1 illustrates the relationship between the 3 themes.

![Figure 1:](http://www.cmajopen.ca/https://www.cmajopen.ca/content/cmajo/11/5/E906/F1.medium.gif)

[Figure 1:](http://www.cmajopen.ca/content/11/5/E906/F1)

Figure 1: 
Interplay of social barriers that perpetuate diabetic foot complications. Note: LEA = lower extremity amputation.

### Health care access barriers

Patients and community health care agreed that a combination of systemic, sociocultural, economic and personal factors affected patients’ ability to access health care services available within the community, in nearby small towns and in urban centres (Table 1).

View this table:
[Table 1:](http://www.cmajopen.ca/content/11/5/E906/T1)

Table 1: 
Main themes, intermediate theme and quotes from focus group with community health care teams and patients*

#### Health care services in communities

Community health care providers mentioned that home care, nursing, immunizations, medication delivery, diabetes education, nutritional support and nutritional education are provided. Both patients and providers mentioned that community health care teams provided health promotion programs and supported patient access to health care services within the community, at urban centres, postdischarge and during health emergencies.

#### Funding

Community health care providers mentioned that additional coverage for orthopedic shoes for patients with diabetes mellitus varied annually and was limited during the COVID-19 pandemic, further limiting access. They indicated that patients who were unaware of the podiatry services covered through Non-Insured Health Benefits might not access those services.

#### Primary health care access barriers

Patients and community health care providers mentioned that, given the lack of consistent primary health care in communities, patients often sought care at various walk-in clinics on a need-to basis. Both groups agreed that continuity of care and chronic disease management are challenging for patients. Providers reported coordinating care with Wellness Wheel Clinic’s visiting doctors to address patients’ primary care needs.

#### Travel barriers

Patients and community health care providers reported that patients who were dependent on family members for transportation for medical appointments may delay health care access. Both participant groups mentioned that limited space on medical vans leads to prioritization of medical conditions and that patients might not be able to access health care in urban areas. Both groups identified that reimbursement for those arranging their own medical transportation is often insufficient to cover the true expenses. Community health care providers mentioned that privacy issues discouraged patients from using transportation services.

#### Racism and mistrust

Patients and community health care providers described several incidents of racism and discrimination experienced in health care settings outside the community. They reported being labelled as drug-seekers, being treated with disrespect or having symptoms ignored because of their ethnicity. Both groups mentioned taking several steps to overcome racism to access needed care.

#### Poor patient–provider communication

Patients and community health care providers observed that providers in Western health care settings often missed opportunities to educate or engage patients in their chronic disease management, leading to further confusion for the patient. Reporting lack of adequate patient–provider communication, patients questioned the value of treatment provided, which again discouraged health care access.

#### Personal factors

Patients and community health care providers observed that child care, financial strains and inability to take time off prevented older adults and female patients, in particular, from adequately caring for their health. They mentioned that costs related to health care equipment, medication and travel, as well as the cost and lack of healthy food alternatives, could affect patients’ ability to self-manage diabetes. Both noted that insufficient knowledge about diabetes management led some patients to avoid care until a problem became severe.

Community health care providers and patients indicated that the impacts of intergenerational trauma have caused downstream effects such as mental health issues, addictions or even denial about their medical conditions. These co-pathologies were reported to delay accessing care or lead to disengagement from care, further exacerbating the condition.

Community health care providers mentioned that some patients preferred traditional medicines instead of seeking Western medical care, given their cultural beliefs.

#### COVID-19 impacts

Community health care providers observed that, during the COVID-19 pandemic, funding was reduced for footwear and opportunities to engage the community through health fairs and education sessions were limited. They also observed that fear of infection deterred patients from travelling in medical vans, leading to delayed access to care, support and education.

### Impacts on health outcomes

Patients and community health care providers observed that patient experiences, coordination of care, after-care and personal attitudes influenced patients’ ability to use health care services and follow treatment plans, which negatively affected health outcomes (Table 1).

#### Health care experience

Community health care providers and patients described many suboptimal experiences where care was delayed, important symptoms were missed, insufficient investigations were ordered and treatments were delayed, which led to the exacerbation of the patient’s condition. Long wait times in both walk-in clinics and emergency departments were reported by patients. Both reported that this led to disengagement from care, hindering future health care use and poor outcomes.

#### Health care coordination

Patients and community health care providers reported that coordinating health care services and policies among various jurisdictions resulted in challenges in health care navigation. Providers acknowledged receiving insufficient information from urban settings after discharge. Lack of knowledge about patients’ discharge plans often resulted in community health care teams lacking the necessary medical supplies to adequately support these patients in the community, leading to disjointed care and increased risk of subsequent infections, readmissions and further complications.

#### Attitudes and belief

Community health care providers described how patients often did not want to put additional burden on their families or health care workers and, thus, avoided using care until absolutely necessary. They mentioned that patients often prioritized familial responsibilities above their own health, which could lead to untimely self-discharge from hospitals and poor prognosis.

#### After-care

Patients and community health care providers observed that amputation puts substantial strain on the physical, mental and spiritual aspects of patients’ lives, especially with limited availability of physical and mental support. Patients described slow, complex recovery that was exacerbated by comorbid conditions. Providers described how patients and families must coordinate various appointments with specialists, rehabilitation and prosthetic clinics, which increased financial burden for families.

### Solutions

Patients and community health care providers both suggested building stronger partnerships between urban and rural health care providers, improving education for both patients and health care providers and identifying innovative strategies to improve patients’ overall health (Table 1).

#### Stronger partnerships

Community health care providers proposed that a stronger partnership between them and urban health care providers and continued advocacy to enhance access to health care services. They noted that providers from the Wellness Wheel Clinic were eliminating barriers to care and enhancing continuity in care and overall quality of care, leading to better health care outcomes.

#### Improved education

Patients mentioned that education about chronic disease management and about dosage and adverse effects of medication was necessary for self-management, especially for patients with a new diagnosis. Patients requested that health education used language that was easy to follow.

Patients suggested starting health promotion, diabetes education and diabetes prevention at elementary schools. Community health care teams suggested they would benefit from a list of services in urban centres. Participants discussed how urban health care providers should receive cultural competency training and information about the impacts of intergenerational trauma on health outcomes and strategies to address systemic racism and discrimination.

#### Innovative strategies

Community health care providers mentioned that alternative strategies — such as increased nutritional support and dietary consultation, which has shown promising results — are needed to promote self-management of diabetes. Other strategies — such as health education on self-care, personal grooming, foot care and diabetes prevention — are needed and well received in the community. Access to exercise options was also mentioned as an adjunctive measure to help improve overall health of community members.

## Interpretation

Our findings document the complex interactions between systemic, personal, socioeconomic and sociocultural factors that affect access to health care services, health care use and quality of care, which, together, increase the risk for lower extremity amputations. Lack of sufficient funding and poor coordination of care on- and off-reserve increase challenges for patients trying to access health care services and create additional burden for community health care teams entrusted with the responsibility of supporting patients with health care navigation. Absence of easily accessible primary care leads to delayed health care access, discontinuity of care and disjointed diabetes management, which exacerbates associated complications and increases the risk for lower extremity amputations.4,17 Several studies have highlighted the high incidence of lower extremity amputations among First Nations communities across the country.7–9,17,18 Our study results add to the existing literature by highlighting the root causes that increase the risk of lower extremity amputations for First Nations patients residing in communities from the perspectives of patients and community health care teams.

Consistent with other studies, the continued impacts of colonization and racism in health care settings and its disastrous implications on health issues among First Nations Peoples are highlighted.3,19,20 Health care funding determines the availability of health care services, expenditure and coverage, which can lead to out-of-pocket expenses, and thus delayed access and poor health outcomes.21 Negative experiences in Western health care settings can create hesitancy among patients, leading to disengagement and early self-discharge from care, and may delay future care access.19,22 Consistent with literature, participants indicated that use of public transportation for health care access was reduced during the COVID-19 pandemic, which may have negatively affected vulnerable peoples’ health outcomes, such as deterioration of their health condition, reinfection, readmission and more aggressive procedures to manage their complications. 23 Aggressive procedures such as amputation have led patients to question physicians’ motives, deepening distrust with Western health care systems.22 Thus, patients may be caught in a vicious cycle of delayed care, increased complications, invasive procedures, distrust, negative experiences and delayed care.

Participants suggested the need for stronger partnerships and better communications between urban and community health care providers to facilitate chronic disease management. 22 These results emphasize the need for continued education at 3 levels. First, improved patient–provider communication and continued health education are needed to support self-management and encourage timely health care access and use.22 Second, urban health care providers should be informed about and supported to consider social determinants of health in chronic disease management plans.22,24 Third, community health care teams should be supported through informational resources and collaboration from urban providers to support patients after discharge.22 These study results call for focused and targeted efforts to develop culturally responsive and trauma-informed health care services for First Nations people to improve timely access and use of health care services, and to reduce risk of lower extremity amputations.5,22,25

Future studies should explore the barriers and challenges to providing health care services to First Nations people from the perspectives of urban health care providers. Research can start discussion on barriers to health care access for all First Nations communities and identify strategies to address community-specific challenges in partnership with First Nations stakeholders. Strategies should emphasize uptake of health care services. Health, well-being and diabetes prevention can be promoted through health education programs targeted to specific age groups and sexes.

### Limitation

This study included perspectives of 2 First Nations communities in central Saskatchewan, and may not reflect views of other sociocultural, diverse First Nations communities and those who did not participate. Study participants may have given socially desirable responses. Given that the study was conducted by health care researchers representing publicly funded health care systems, the interpretations could be biased. However, we engaged a community note-taker and the communities reviewed and approved our data analysis to reduce biases.

### Conclusion

Patients and community health care providers identified several factors associated with increased risk of lower extremity amputations. These factors lead to vicious cycles that perpetuate illness severity and thus lead to more invasive interventions. Through continued education, urban health care providers should be informed about access barriers for First Nations patients, systemic racism experienced in health care setting and intergenerational trauma that affect health outcomes for First Nations peoples. Focused efforts to facilitate partnership and communication between urban and community health care teams are needed to ensure timely linkage to appropriate care and a smooth transition of care to and from urban centres and communities. Systemic changes to increase funding for medical travel, health promotion programs and reliable on-reserve primary care are needed.

## Acknowledgements

The authors thank the communities of Muskowekwan and George Gordon, located on Treaty 4 territory in the Touchwood Tribal Council Area, Saskatchewan, Canada. They also thank the Canadian Society for Vascular Surgery and the University of Saskatchewan, College of Medicine, for providing funding for this project.

## Footnotes

*   **Competing interests:** Susanne Nicolay reports funding from Pfizer and honoraria from AIMS Saskatchewan and the Health Innovation and Public Policy Conference. She is director of Wellness Wheel. No other competing interests were declared.

*   This article has been peer reviewed.

*   **Contributors:** Mamata Pandey, Juandell Windigo, Agnes Bitternose and David Kopriva contributed to the conception and design of the work. Tyrell Wees, Mamata Pande and Susanne Nicolay contributed to data acquisition, analysis and interpretation. Tyrell Wees and Mamata Pandey drafted the manuscript. All of the authors revised it critically for important intellectual content, gave final approval of the version to be published and agreed to be accountable for all aspects of the work.

*   **Funding:** Funding was provided through the Canadian Society for Vascular Surgery.

*   **Data sharing:** A summarized version of the data may be made available based on the appropriateness of the request by contacting the corresponding author. A summarized version can be shared after receiving approval from the First Nations communities engaged in the study, to honour OCAP (Ownership, Control, Access, Possession) principles. However, such data will no longer be available 5 years after the study is closed as all data collected for this study will be deleted after this time, as per the guidelines of the ethics board.

*   **Supplemental information:** For reviewer comments and the original submission of this manuscript, please see [www.cmajopen.ca/content/11/5/E906/suppl/DC1](http://www.cmajopen.ca/content/11/5/E906/suppl/DC1).

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: [https://creativecommons.org/licenses/by-nc-nd/4.0/](https://creativecommons.org/licenses/by-nc-nd/4.0/)

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