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| Name | Class |
|---|---|
| University of California, San Diego | OTHER |
| University of New Mexico | OTHER |
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This community-driven study features a mixed-method, participatory design to examine help-seeking behavior and healthcare experiences of American Indian elders in New Mexico, in order to develop and evaluate a tailored intervention to enhance knowledge of, access to, and use of insurance and available services to reduce healthcare disparities. This study includes qualitative and quantitative interviews combined with concept mapping and focus groups with American Indian elders and other key stakeholders.
This five-year project was developed by investigators from the Behavioral Health Research Center of the Southwest (BHRCS), a center of the Pacific Institute of Research and Evaluation (PIRE), the Health Committee of the New Mexico Indian Council on Aging (NMICoA), and the University of New Mexico (UNM). The project combines qualitative and quantitative interviews with concept-mapping (CM) techniques and focus groups to study insurance coverage, help-seeking behavior, and the healthcare experiences of American Indian Elders (AIEs) in New Mexico (NM). Practical knowledge grounded in the actual perspectives of AIEs and other key stakeholders may improve healthcare practices and policies for a population largely excluded from national and state discussions of health reform. The study data will also inform the adaptation and development of culturally tailored programming to enrich understanding and facilitate negotiation of a changing landscape of healthcare by AIEs. Our four specific aims are to:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Navigators | AIE Navigators will use the Seasons of Care app in the context of their everyday outreach work with AIEs over two four-month intervention periods (P1 and P2). Their goal will be to facilitate health literacy to shift attitudes, beliefs, and behaviors to create a "Culture of Coverage" for AIEs at individual, organizational/community, and policy levels. Separated by distance, the AIE Navigators will receive coaching as necessary, using virtual meeting space, to help refine their implementation skills from a member of the research team with experience in AIE health outreach. |
| |
| American Indian Elders (AIEs) | Elders will be exposed to the Seasons of Care app when they reach out to navigators for assistance navigating the healthcare system. |
| |
| Healthcare providers/staff | This cohort will be exposed to the Seasons of Care app via navigators and their patients. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Seasons of Care App | Behavioral | A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| Measure | Description | Time Frame |
|---|---|---|
| User Evaluation Survey | A semi-structured, in-person interview (or focus group, depending on availability) with AIEs and healthcare providers who interacted with a navigator using the Seasons of Care app to assess experiences with, and effects of, the Seasons of Care app; suggestions to improve the Seasons of Care app | Once at the end of P2 (Month 8 of 8) |
| Measure | Description | Time Frame |
|---|---|---|
| Navigator Pre- and Post-Evaluation Interview | A semi-structured, in-person interview comprised of open-ended questions to assess navigator's confidence and experiences with communicating health information to AIEs and healthcare providers; perceptions of the Seasons of Care app | Month 1 and 4 (of 8) for P1 Navigators; Month 5 and 8 (of 8) for P2 Navigators |
| Measure | Description | Time Frame |
|---|---|---|
| User Evaluation Demographic Survey | A demographic survey with AIEs and healthcare providers who interacted with a navigator using the Seasons of Care app | Once at the end of P2 (Month 8 of 8) |
| Feasibility Questionnaire |
Navigators
Inclusion Criteria:
Exclusion Criteria:
American Indian Elders (AIEs) Inclusion
Exclusion ● Individuals who cannot read in English or who have not interacted with a pilot test Navigator will not be eligible to participate
Healthcare Staff/providers Inclusion
Exclusion
● Individuals who have not interacted with a pilot test Navigator or do not work in a healthcare facility serving our primary population, will not be eligible to participate
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Outreach workers from indigenous communities in the southwest United States, and then the American Indian elders, healthcare staff and providers that interact with those outreach workers.
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| Name | Affiliation | Role |
|---|---|---|
| Cathleen Willging | Pacific Institute for Research and Evaluation | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Pacific Institute for Research and Evaluation | Albuquerque | New Mexico | 87106 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 29914446 | Derived | Willging CE, Sommerfeld DH, Jaramillo ET, Lujan E, Bly RS, Debenport EK, Verney SP, Lujan R. "Improving Native American elder access to and use of health care through effective health system navigation". BMC Health Serv Res. 2018 Jun 18;18(1):464. doi: 10.1186/s12913-018-3182-y. |
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Due to the complete closure of tribal communities during the COVID-19 pandemic, zero participants were enrolled and assigned in the "American Indian Elders (AIEs)" and "Healthcare Providers/Staff" Arms/Groups, respectively.
We used reputational case selection to identify potential participants who were individuals who provided healthcare navigation services to Elders as part of their everyday work. We approached individuals or administrators at community organizations, healthcare facilities, and tribal agencies with an email or in-person description of the study and an invitation to participate. We followed up at each site with up to three emails, visits, or phone calls.
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| ID | Title | Description |
|---|---|---|
| FG000 | Navigators | AIE Navigators will use the Seasons of Care app in the context of their everyday outreach work with AIEs over two four-month intervention periods (P1 and P2). Their goal will be to facilitate health literacy to shift attitudes, beliefs, and behaviors to create a "Culture of Coverage" for AIEs at individual, organizational/community, and policy levels. Separated by distance, the AIE Navigators will receive coaching as necessary, using virtual meeting space, to help refine their implementation skills from a member of the research team with experience in AIE health outreach. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| FG001 | American Indian Elders (AIEs) | Elders will be exposed to the Seasons of Care app when they reach out to navigators for assistance navigating the healthcare system. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| FG002 | Healthcare Providers/Staff | This cohort will be exposed to the Seasons of Care app via navigators and their patients. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| Title | Milestones | Reasons Not Completed | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Phase 1 |
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| Phase 2 |
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Due to complete closure of tribal communities during the COVID-19 pandemic, we were unable to complete baseline measures with any American Indian Elders or healthcare providers/staff
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| ID | Title | Description |
|---|---|---|
| BG000 | Navigators | AIE Navigators will use the Seasons of Care app in the context of their everyday outreach work with AIEs over two four-month intervention periods (P1 and P2). Their goal will be to facilitate health literacy to shift attitudes, beliefs, and behaviors to create a "Culture of Coverage" for AIEs at individual, organizational/community, and policy levels. Separated by distance, the AIE Navigators will receive coaching as necessary, using virtual meeting space, to help refine their implementation skills from a member of the research team with experience in AIE health outreach. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| Units | Counts |
|---|---|
| Participants |
|
| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Continuous | Mean |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | User Evaluation Survey | A semi-structured, in-person interview (or focus group, depending on availability) with AIEs and healthcare providers who interacted with a navigator using the Seasons of Care app to assess experiences with, and effects of, the Seasons of Care app; suggestions to improve the Seasons of Care app | Due to the complete closure of tribal communities during the COVID-19 pandemic, no data were collected for this outcome measure. | Posted | Once at the end of P2 (Month 8 of 8) |
|
Adverse event data were collected from Navigators monthly during Phase 1 and Phase 2
Due to the complete closure of tribal communities during the COVID-19 pandemic, focus groups with AIEs and healthcare providers were not completed
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | Navigators | AIE Navigators will use the Seasons of Care app in the context of their everyday outreach work with AIEs over two four-month intervention periods (P1 and P2). Their goal will be to facilitate health literacy to shift attitudes, beliefs, and behaviors to create a "Culture of Coverage" for AIEs at individual, organizational/community, and policy levels. Separated by distance, the AIE Navigators will receive coaching as necessary, using virtual meeting space, to help refine their implementation skills from a member of the research team with experience in AIE health outreach. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
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Data collection with American Indian Elders and healthcare providers/staff to evaluate their experiences with the Seasons of Care Guide was not possible due to the closure of tribal communities during the COVID-19 pandemic and the infeasibility of collecting data with these participants remotely. These evaluation data are qualitative; future research on the dissemination of the Seasons of Care Guide should prioritize quantitative methods.
| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Cathleen Willging | Pacific Institute for Research and Evaluation | 505-765-2328 | cwillging@pire.org |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Feb 7, 2023 | Dec 13, 2023 | Prot_SAP_000.pdf |
| ICF | No | No | Yes | Informed Consent Form | Sep 15, 2016 | Jun 26, 2024 | ICF_001.pdf |
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A written questionnaire to assess navigator's experiences with, and effects of, Seasons of Care Guide
| Assessed monthly for 4 months; participants' ratings for each category were averaged. Average ratings per participant for each category is reported here. |
| NOT COMPLETED |
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| BG001 | American Indian Elders (AIEs) | Elders will be exposed to the Seasons of Care app when they reach out to navigators for assistance navigating the healthcare system. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| BG002 | Healthcare Providers/Staff | This cohort will be exposed to the Seasons of Care app via navigators and their patients. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| BG003 | Total | Total of all reporting groups |
| years |
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| Sex: Female, Male | Count of Participants | Participants |
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| Ethnicity (NIH/OMB) | Count of Participants | Participants |
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| Race (NIH/OMB) | Count of Participants | Participants |
|
| Confidence communicating with Elders | Qualitative self-report regarding confidence communicating with American Indian Elders about their health issues and healthcare and insurance options. | Count of Participants | Participants |
|
| Confidence communicating with healthcare providers | Qualitative self-report of confidence communicating with healthcare providers regarding the health needs, healthcare options, barriers to care, and insurance issues experienced by American Indian Elders. | Count of Participants | Participants |
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| Comfort using Seasons of Care Guide | Qualitative self-report of comfort using the Seasons of Care guide to help American Indian Elders as part of everyday work. | Count of Participants | Participants |
|
| OG001 | American Indian Elders (AIEs) | Elders will be exposed to the Seasons of Care app when they reach out to navigators for assistance navigating the healthcare system. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
| OG002 | Healthcare Providers/Staff | This cohort will be exposed to the Seasons of Care app via navigators and their patients. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. |
|
| Secondary | Navigator Pre- and Post-Evaluation Interview | A semi-structured, in-person interview comprised of open-ended questions to assess navigator's confidence and experiences with communicating health information to AIEs and healthcare providers; perceptions of the Seasons of Care app | Due to the complete closure of tribal communities during the COVID-19 pandemic, focus groups with AIEs and healthcare providers/staff were not completed. Three Navigators were unable to complete post-evaluation interviews due to changing responsibilities during the COVID-19 pandemic. One Navigator left their position before completing the post-evaluation interview. | Posted | Count of Participants | Participants | Month 1 and 4 (of 8) for P1 Navigators; Month 5 and 8 (of 8) for P2 Navigators |
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| Other Pre-specified | User Evaluation Demographic Survey | A demographic survey with AIEs and healthcare providers who interacted with a navigator using the Seasons of Care app | Due to complete closure of tribal communities during the COVID-19 pandemic, no data were collected for this outcome measure. | Posted | Once at the end of P2 (Month 8 of 8) |
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| Other Pre-specified | Feasibility Questionnaire | A written questionnaire to assess navigator's experiences with, and effects of, Seasons of Care Guide | Two Navigators were unable to complete any monthly questionnaires due to changing work responsibilities during the COVID-19 pandemic. One Navigator left their position before completing any questionnaires. | Posted | Count of Participants | Participants | Assessed monthly for 4 months; participants' ratings for each category were averaged. Average ratings per participant for each category is reported here. |
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| 0 |
| 16 |
| 0 |
| 16 |
| 0 |
| 16 |
| EG001 | American Indian Elders (AIEs) | Elders will be exposed to the Seasons of Care app when they reach out to navigators for assistance navigating the healthcare system. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. | 0 | 0 | 0 | 0 | 0 | 0 |
| EG002 | Healthcare Providers/Staff | This cohort will be exposed to the Seasons of Care app via navigators and their patients. Seasons of Care App: A web-based mobile application (app) called the Seasons of Care Elder Navigation Guide will assist elders, their families/caregivers, healthcare providers, outreach workers, and other community members in navigating healthcare and insurance systems. The app has the added advantage of being easy to update to respond to future changes in health care and insurance, and sustainable because it is not dependent on intensive training, developing, and retaining of individuals in professional navigation positions. | 0 | 0 | 0 | 0 | 0 | 0 |
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| No response |
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| Effects of Seasons of Care Guide on Communication with Elders |
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| 7 |
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| 6 |
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| 5 |
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| 4 |
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| 3 |
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| 2 |
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| 1 |
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| Not rated |
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| Can easily navigate on first try (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| Can easily re-located info (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| Can find relevant info using "Search" (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| Can easily find healthcare facilities (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| AIEs like using it (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| Useful for working with AIEs |
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| Provides info not available elsewhere (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| Useful tool for healthcare providers (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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| Is helping AIEs access care and insurance (Average rating: 10=Strongly agree, 1=Strongly disagree) |
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