Engaging American Indian Tribal Members Using Group‐Level Assessment to Identify Needs and Priorities of a Local Heart Disease Program to Improve Cardiac Care

Abstract

Background

Cardiac disease is a leading cause of death in American Indian populations, and echocardiographic screening within 1 tribal nation revealed 6% of tribal members had undiagnosed structural heart disease (SHD). However, improved strategies for scale‐up of screening and wrap‐around care are needed to improve outcomes. The purpose of this study was to engage tribal members in identifying priorities related to heart health to inform scalable models for improved SHD diagnosis, care, and outcomes.

Methods and Results

We used group‐level assessment, a qualitative and participatory large group method, to collaboratively generate information and interactively evaluate themes with relevant community members. Together with a Community Research Leadership Board established for this project, we held 4 group‐level assessment sessions throughout the tribal land. Themes from each session were combined and distilled into priority areas. A total of 163 tribal members participated in the group‐level assessment sessions. Five priorities for an SHD program were identified: (1) heart health/SHD education and awareness; (2) cultural considerations; (3) inclusive, multigenerational community engagement; (4) improved resources for general health and wellness; and (5) accessible, patient‐centered health care with local cardiac care.

Conclusions

Group level assessment was the first step in our efforts to improve outcomes for American Indian tribal members with SHD. The generated community insights will directly inform the development of a cardiac disease extender program that will be codesigned with members of the Community Research Leadership Board, tribal community health workers, and the larger community.

Nonstandard Abbreviations and Acronyms

CRLB

Community Research Leadership Board

GLA

group‐level assessment

IHS

Indian Health Services

SHD

structural heart disease

Research Perspective.

What Is New?

• We used group‐level assessment, a novel community‐based participatory research approach, to understand an American Indian community's perspective on heart health care.

• We addressed cardiovascular disease in American Indians through a collaborative, community‐informed approach so that interventions are culturally appropriate and sustainable.

What Question Should Be Addressed Next?

• How do you codevelop a heart health program to address the priorities identified through the group‐level assessment process?

• How do you successfully implement a community informed approach to improving heart health care?

Cardiovascular disease is a leading cause of death in American Indian populations, causing death more often and earlier than in the general US population. ¹ Additionally, American Indian adults have a prevalence of 12% of cardiovascular disease, higher than people of Hispanic, non‐Hispanic White, Black, and Asian race and ethnicity (range, 1%–8%). ² Our preliminary work suggests that the burden of structural heart disease (SHD), a disease affecting the heart valves or heart function, among some American Indian populations is markedly underestimated. ³

In 2021, we partnered with the Indian Health Services (IHS) of 1 tribe in Eastern Arizona to try to increase access to point‐of‐care echocardiography screening for patients presenting to the IHS for other reasons. ³ We used task shifting to train 12 IHS providers, inexperienced in echocardiography, to obtain cardiac screening echocardiograms. Findings revealed that nearly 6% of those screened were living with undiagnosed SHD. Although we were able to demonstrate that task shifting and integration of echocardiography for screening could be a powerful tool to improve diagnosis, there were challenges with scale within the IHS system including limited provider time and competing priorities during clinical care visits. These constraints limited the sustainability and potential impact of this heart care model. ³

In 2023, our team set out to imagine a new approach to improve access to SHD care for this population by codeveloping a heart health program with tribal members. The ultimate goal was to develop a model that will be adaptable and scalable to other tribal nations and rural populations, where barriers to cardiac diagnosis and retention in care exist. Using a community‐engaged research approach, community members served as experts in their experiences with SHD in their tribe and helped prioritize concerns and desires for a heart health program. This study aimed to engage tribal members in identifying priorities related to heart health to inform scalable models for improved SHD diagnosis, care, and outcomes as the first step toward efforts to improve cardiac care in this tribe in a culturally informed and sustainable way.

METHODS

Study Setting

Group‐level assessment (GLA) sessions were conducted with a tribe living in the east central region of Arizona. ⁴ Approximately 15 000 members live on these tribal lands. ⁵ Although there is an IHS unit located within the tribal nation that provides medical care, the closest reliable cardiac specialists are located almost 200 miles away.

Study Method

We used GLA methodology, a qualitative and participatory large group method in which information is collaboratively generated and interactively evaluated with community members, leading to the development of participant‐driven and relevant action plans. ⁶ , ⁷ , ⁸ GLA was chosen to directly engage with and harness the collective knowledge of a wide range of tribal members with the goal of cocreating an SHD program that meets the needs and priorities of the tribal nation. In contrast to traditional qualitative methods (ie, interviews, focus groups), GLA by design is intended to actively engage large groups of people with lived experience at all levels of a system/community. Within the GLA process, participants are viewed as the experts of their lives and communities, and accordingly, generate, analyze, and prioritize data from their perspectives. ⁸ The study was reviewed by the Cincinnati Children's Institutional Review Board and given a determination of non‐human subject research (as defined by Department of Health and Huma Services and Food and Drug Administration regulations) due to the lack of generalizability of data and specific contribution to program design. Thus, the institutional review board did not oversee the conduct of the project. The study team still met the human use regulations associated with qualitative research by providing participants with the reason for the project and what would be entailed for participation. Participants demonstrated their willingness to participate by attending and participating in the GLA session. The activities described were reviewed and approved by the Tribal Health Board and Tribal Council (resolution number, 08‐2023‐197). Food and refreshments were provided during the event, and participants received gift cards as a small honorarium for their time. The unidentifiable data supporting the findings of this study may be available upon reasonable request to the corresponding author.

We held 4 separate GLA sessions in 3 geographically distinct community centers. Each community center had a capacity for up to 100 people, movable tables and chairs, and ample wall space to display written GLA prompts. GLA proceeds through 7 steps: Climate Setting, Generating, Appreciating, Reflecting, Understanding, Selecting, and Action (Figure 1). ⁶ , ⁷ , ⁸ For the purposes of our study, we completed steps 1 through 6, deferring step 7 (Action) for planned design workshops that will be cofacilitated with members of a Community Research Leadership Board (CRLB). ⁹

Figure 1. Steps of the group‐level assessment process.

The 7 steps of the large group participatory group‐level assessment method.

Throughout the GLAs, we worked with the CRLB, comprising 5 community members whose primary role is to partner closely with the research team, providing insight and direction on research activities. Additionally, the CRLB facilitates engagement between tribal members and the research project. The CRLB members helped determine where to hold sessions, advertise the events, recruit participants, advise on cultural traditions (eg, asking an elder to say a prayer before eating), and assisted with the GLAs. The efforts and collaboration of the CRLB enabled us to make meaningful and effective decisions on the project and adjust when necessary.

Participant Selection and Study Procedure

Participants were recruited through word of mouth and flyers/infographics posted to social media platforms by members of the CRLB. We began each GLA with introductions and a brief icebreaker that encouraged participants to interact with new people (Step 1, Climate Setting). At each GLA session, individual‐level qualitative data were generated by attendees moving around the room and responding to open‐ended prompts displayed on flip charts (Step 2, Generating) throughout the room (eg, “If we really want to engage Tribal members in heart care, we have to…..” “Best way/worst way to support people with heart problems is….” “Health care would be more accessible in our community if….”) The initial prompts were drafted across 5 domains (heart disease experience, health care in general, heart health care, community, models/strategies) and then shared with our CRLB for revisions and selection of the final prompts. An example of a completed flipchart is shown in Figure 2, and a full list of prompts can be found in Table S1. After they finished responding, attendees were instructed to walk around the room and look at what others had written (Step 3, Appreciating) noting any ideas that stood out or were surprising (Step 4, Reflecting). The large group was then divided into smaller groups, with 3 to 5 flipchart prompts assigned to each small group. Small groups were instructed to discuss the responses on the charts and to identify 3 common themes/main ideas across the charts (Step 5, Understanding). After each small group identified salient themes from their flip charts, all the attendees reunited, and each small group reported their findings in a round‐robin fashion with each group presenting 1 theme at a time. The facilitator recorded the major themes on a flip chart for the larger group to see. Attendees then recorded their top priority from the major themes to be collected by our team (Step 6, Selecting). At the end of each GLA, participants completed an exit survey containing demographic information and willingness to be contacted for future project activities for Step 7, Action (ie, design workshops).

Figure 2. Sample completed flip chart from a GLA session.

One of the completed flip charts showing GLA participant responses to the open‐ended prompt “To get our community more engaged in health problems, I think we need to….” GLA indicates group‐level assessment.

Statistical Analysis

Thematic analysis was done in real‐time during the GLA sessions (Step 5, Understanding). ⁶ , ⁷ , ⁸ In small groups ranging from 6 to 8 people, participants sorted responses into 3 main ideas/themes across their assigned flip charts (each small group was assigned ≈5 flip charts from the total set of charts). These main ideas were reported to the larger group for discussion and prioritization. After the 4 independent GLA sessions were completed, data were distilled and synthesized by American Indian Structural Heart Disease Parternship (INSTEP) team members from all GLA sessions (the individual GLA session themes are attached in Tables S2 through S5) into 5 priority areas.

RESULTS

Participants

A total of 163 people participated in GLA sessions held in 1 of 3 different geographic locations of the tribal land: Location A (2 sessions; n=38 and n=48), Location B (1 session; n=37), and Location C (1 session, n=40). Participant median age was 40.3 years (interquartile range, 25.3–59.0), 68% were women, and 90% identified as American Indian by race (Table1). Three authors (M.M., L.M.V., and S.d.L.) had full access to all data in this study and take responsibility for their integrity and the data analysis.

Table 1.

Group‐Level Assessment Participant Characteristics (N=163)

Characteristic	Value, n (%)
Age range, y
14–20	23 (14.1)
21–30	28 (17.2)
31–40	33 (20.2)
41–50	21 (12.9)
51–60	20 (12.3)
61–70	30 (18.4)
71–80	7 (4.3)
81+	1 (0.6)
Sex
Women	111 (68.1)
Men	39 (23.9)
Nonbinary	2 (1.2)
Missing	11 (6.8)
Race
American Indian or Alaskan Native	147 (90.2)
Asian	1 (0.6)
Black	1 (0.6)
White	2 (1.2)
Missing	12 (7.4)
Ethnicity
Non‐Hispanic and non‐Latino	102 (62.6)
Hispanic and Latino	8 (4.9)
Missing	53 (32.5)
Tribal affiliation
White Mountain Apache	137 (84)
Other (eg, Hualapai Nation, Hopi, Navajo)	14 (8.6)
Missing/unknown	12 (7.4)

GLA‐Generated Priority Areas

Across GLA sessions, there were 5 priorities that were identified as essential to a successful SHD program: (1) heart health/SHD education and awareness; (2) cultural considerations; (3) inclusive, multigenerational community engagement; (4) improved resources for general health and wellness; and (5) accessible, patient‐centered health care with local cardiac care. Details of each priority are discussed below.

Heart Health/SHD Education and Awareness

Participants described a need for both health education generally, but also heart health education specifically across these tribal lands. GLA attendees explained a health education gap, reporting that people in the community do not take care of their health because they lack general understanding, especially when it comes to heart health. Noting that the community “lacks practical resources and education for taking care of our hearts,” attendees expressed that heart problems are not seen as a priority within the tribe because people do not understand the symptoms, preventive measures, or risk factors associated with heart disease. Participants stated that the best way to support those with heart problems is to provide educational resources and a safe place for people to talk about their heart problems, as well as to raise awareness of heart health.

Furthermore, participants voiced the desire for increased community awareness and outreach related to heart health/SHD. GLA participants wanted more outreach from the IHS and community health representatives, additional heart health/SHD community resources, hassle‐free, accessible ways to learn about heart health, and relatable education that raises awareness across generations. Participants said that working with schools and young people “so [that] family members from young to old can understand heart health” would significantly increase the effectiveness of a heart health program in this tribal nation. Participants mentioned radio and social media as effective ways to spread awareness to the community. If awareness increased, participants expressed hope that the community would take heart health more seriously. Across GLA sessions, attendees remarked that the key for successful heart health programs and interventions was that they are localized, relatable, accessible, comfortable, and consistent for all tribal members.

Cultural Considerations

Overwhelmingly, participants said that tribal language and culture was integral to a heart health program's success. GLA participants discussed the inherent privateness and denial among many of their members, especially when it comes to sharing personal health issues, so a heart health program that is “culturally in tune” and recognizes traditional methods and tribal culture could make people feel more comfortable. In GLA prompt responses, participants explained that “cultural stigma exists and impacts when and if individuals receive needed care or seek out needed care,” evidenced by a history of ignoring some groups and past medical traumas.

Inclusive, Multigenerational Community Engagement

The theme of community engagement and need for consistent, accessible community programs, events, and support was consistently identified throughout the GLA sessions. Participants explained that family and community are the greatest supports for healthy lifestyles in the community, noting that when people in the community are stressed, they turn to “family get togethers to show support” and that “talking openly and sharing your concerns” is the most promising practice around helping people manage their health. They described the critical importance of having frequent opportunities to gather and connect with other tribal members around heart health and other health‐related issues. Additionally, partakers articulated a desire to be engaged in solutions for addressing heart health, but that social activities related to health in the tribe were limited. The need for community involvement across all ages and in all communities on tribal land, including involvement with schools to reach youth, was also described. GLA participants recognized that heart health programming would be most successful if it were “community informed/led.”

Improved Resources for General Health and Wellness

GLA participants emphasized that basic needs are not currently being met in the tribal nation, making it challenging to engage tribal members in heart health/other health programs. Substance abuse/addiction, depression, poverty, neglect, and lack of support are significant health challenges the community faces. Participants indicated that substances (drugs and alcohol) are the biggest threat to people's health in the community.

GLA participants expressed a desire for increased opportunities for comprehensive wellness, nutrition, and physical fitness activities open to everyone. They explained that, “When people are stressed in our community, they turn to dissociative activities (not being present by way of substances, doomscrolling, sleeping.).” Lack of physical activity was described as a major health challenge for tribal members. Participants shared that current unhealthy eating habits and limited fitness centers combined with barriers to physical activity (eg, stray dogs, access to gyms) are major threats to keeping people healthy.

Accessible, Patient‐Centered Health Care With Local Cardiac Care

People strongly desire patient‐centered health care that prioritizes consistent doctors and continuous care. Participants cited the many structural barriers in accessing health care, including distance to resources (healthy groceries, medical facilities/care), lack of transportation, and cost of healthy foods and medical care. These barriers, coupled with concerns for privacy and establishing rapport and trust with clinical providers, were noted as major roadblocks to accessible, user‐friendly health care. GLA participants emphasized the need for local access to cardiac specialists, rather than traveling hours for heart care, and the need for “better appointments that are not 3 to 6 months out.” Participants desired appointment reminders, home visits, and extended clinic hours. Additionally, they identified the need for reliable transportation to attend regular wellness checks and facilitate consistent doctors' visits, including specialty care. Participants perceived doctors as a source of support, wishing for doctors to listen and prioritize open communication. In terms of heart health/SHD, attendees consistently cited lack of knowledge or support to address heart problems given no available local cardiac specialist or heart program.

Participant Reaction to the GLA Approach

Informal feedback from participants suggested that the GLA sessions were well received, engaging, and motivating for attendees. Additionally, participants highlighted that there were representatives from all age groups. Participants said they appreciated being heard, and that they were contributing to something that would help not only themselves, but others as well. People commented on the scarcity of forums that allowed people to easily voice their opinions, and they valued the opportunity to give meaningful input alongside peers and neighbors. They also noted the desire to have these types of initiatives originating from their own leaders and existing programs. Finally, participants indicated the approach could have benefited from a dedicated Apache translator, particularly for the elders in attendance (for our sessions, 1 of the CRLB members functioned as an informal translator as needed).

DISCUSSION

American Indian adults are disproportionately impacted by poor outcomes related to cardiovascular disease whose effects are exacerbated by a multitude of factors, and notably limited access to cardiac diagnosis and care. Prior programs aimed at addressing barriers to care, such as limited access to timely diagnosis and lack of culturally relevant interventions, have demonstrated only partial success, limited by challenges of sustainability and feasibility. ¹⁰ Recognizing these limitations, our study sought to engage with tribal members to understand needs and priorities as they relate to heart health to inform the codesign of a structural heart disease program that encompassed the full spectrum of care. The GLA sessions provided insight into the barriers and facilitators to SHD care on tribal lands from the community members living there.

Heart Health/SHD Education and Awareness

GLA participants shared that awareness of SHD in the community was low. This finding is in line with a survey of 220 American Indian or Alaska Native adults on cardiovascular disease perceptions and perceived information sufficiency; more than half reported either only being moderately (54%) or not at all (9%) informed about cardiovascular disease. ² Furthermore, participants living in large metropolitan areas considered themselves well informed about cardiovascular disease, whereas their counterparts living on a reservation were less likely to perceive themselves as such. In their article, Boyd highlights that effective communication requires an understanding of where people seek information, how they perceive a health risk, and how informed they perceive themselves to be about a risk. ² Based on the responses from the GLA participants, we know many tribal members view themselves as lacking knowledge and resources on heart health. We see this as an opportunity to build awareness within the community, partnering with our CRLB and other tribal resources to provide education and information in a manner that will be well received, particularly because perceived information sufficiency around SHD seems low, indicating potential high receptiveness from tribal members.

Cultural Considerations

Ensuring initiatives are culturally attuned is vital to improving health outcomes in American Indian populations. ¹¹ Awareness and respect of a communities' dynamic culture including language, beliefs, and traditions, as well as how these impact health‐related behaviors and the manner in which people perceive and navigate health care are crucial. ¹² Several efforts have demonstrated the effectiveness of culturally centered approaches to improve health education such as treating high blood sugar with traditionally used native berries, emphasizing tribal‐specific definitions of health to reduce the risk of further erosion of Native American culture, ¹³ using culturally relevant imagery as an educational tool for obesity education, ¹⁴ and the use of community talking circles to provide diabetes education. ¹⁵ In their article, Beck et al state, “Culture could be the missing prescription when it comes to improving cardiovascular health among American Indians and Alaska Natives,” ¹⁵ a sentiment echoed by GLA participants.

Inclusive, Multigenerational Community Engagement

A multigenerational approach to community engagement was identified by participants as a crucial aspect of a heart health program on tribal land. Participants explained that their community is anchored by the elders, and to succeed a program must include initiatives and education that is accessible to all age groups. Similar conclusions have been identified in a program developed in Mobile, Alabama, which sought to reduce disproportionately poor health outcomes that plague the Black community. Using a community‐based participatory research approach, this program developed a multigenerational approach aimed at transforming health education into community action by blending the efforts of 2 age‐respective health groups, empowering youth and adult community members impacted by health disparities. ¹⁶ Comparably, the risk factor education program, Honoring the Gift of Heart Health, has taken an effective family‐oriented approach for adopting heart health recommendations, emphasizing lifestyle change for people of all ages. ¹⁷ These multigenerational approaches strengthen opportunities for impact and sustainability.

Improved Resources for General Health and Wellness

Throughout the 4 GLAs, community members expressed a need for improved resources for general health and wellness to facilitate engagement in a cardiac disease extender program. This need is consistent with literature detailing the significant impact of social determinants of health on outcomes. Social determinants of health are “life‐enhancing resources, such as food supply, housing, economic and social relationships, transportation, education, and health care, whose distribution across populations effectively determines length and quality of life.” ¹⁸ Addressing unfavorable social determinants or conditions moves communities closer to achieving health equity and improves health outcomes. Although some of the health and wellness issues facing people within the tribal nation are consistent with those of the general US population, their impact is often magnified. For example, although substance abuse on tribal land is similar to other rural areas in America, combined with the “constant strains of cultural dislocation and trauma, as well as discrimination and microaggressions,” the issue takes on a different context in American Indian communities. ¹⁵

Accessible, Patient‐Centered Health Care With Local Cardiac Care

As for many rural populations, access to specialized cardiac care is extremely limited on tribal land. Rural communities in America lack easy access to specialized medical care, which leads to long travel and often delayed care, especially in communities where transportation is an issue, ¹⁹ as is the case for many American Indian patients. ¹⁵ The lack of accessible, patient‐centered cardiac care was highlighted in the GLA sessions and contributes to health inequities for heart disease and other conditions.

GLA as a Vehicle for Community‐Engaged Research

Our study demonstrates the usefulness of GLA as a participatory, qualitative method that facilitates partnering with insiders ²⁰ to elicit the specific needs and considerations of a community spanning a large geographic area. GLA was an important tool for the INSTEP program for a myriad of reasons. It not only improved our ability to identify and understand priorities and attitudes around heart health in this tribal nation, but enabled collaboration and prioritization driven by the target audience. ⁸ Furthermore, it provided us with a concrete point of collaboration with the CRLB where their input was valued and used, strengthening the community‐academic partnership, which was in its infancy at the time.

Review of our findings and the current literature supports that there is room for improvement of SHD awareness and education, as well as culturally relevant interventions and access to resources like local cardiac care. Although the GLA approach is beneficial for any population, it may be even more critical for historically marginalized and oppressed groups who have previously been denied the resources to advocate for themselves. As mentioned by GLA participants, a community‐informed approach is imperative to the development of an effective SHD program for this tribal nation. This finding is congruent with current literature on community‐engaged research, highlighting that achieving health equity requires a community's insights to understand needs, promote strengths, and direct resources to ensure everyone attains “full potential health.” ²¹ Formation of the CRLB and executing the GLA sessions were the first steps in our approach to move the INSTEP program beyond identifying health disparities toward designing community‐driven approaches that serve to advance health equity. ²¹ Findings of the GLA laid the foundation that will directly inform our future work, starting with semistructured interviews to further expand on the themes identified by the GLA sessions. The findings from these activities will form the basis of design workshops, collaborating with community members to elicit barriers and facilitators to a SHD program, as well as identifying solutions and proposed program components, resulting in the codesign of a SHD program aimed at improving disparities in SHD care and outcomes, taking into account community needs.

Limitations

Although relevant to this specific context, our study may have limited generalizability to other settings, because access to resources (eg, transportation, local cardiac care) and health intervention programs vary across tribal nations in the United States. Additionally, there is a chance of bias due to the GLA recruitment process being primarily word of mouth and social media platforms facilitated by the CRLB. For those tribal members without access to social media or personal connection to our recruitment team, their likelihood of attending a GLA session may have been lower.

CONCLUSIONS

Using GLA methodology within an American Indian population in Eastern Arizona allowed us to partner with tribal members to understand their specific concerns and priorities for heart health on their tribal land. Our findings are consistent with current literature detailing common barriers to quality care in rural populations and highlighting the importance of community awareness and culturally informed care. Valuable insights were gained from the GLA sessions, which will help inform the codevelopment of the INSTEP program, with the goal of creating a relevant and sustainable model.

Sources of Funding

This project was funded by the American Heart Association as a part of their Health Equity Research Network (award number: 23HERNPRH1150359).

Disclosures

None.

Supporting information

Tables S1–S5