Relationship-building to develop an Indigenous community-based epidemiological study investigating developmental resilience factors among children with prenatal substance exposure

Abstract

Tribal Nations experience substance misuse at high rates often attributed to historical and contemporary traumas. In response, several Tribal Nations are addressing these issues through efforts to promote recovery and prevention to substance misuse. Study objectives were to partner with a Tribal Nation to develop a study to explore factors that contribute to the wellbeing of families to children with prenatal substance exposure and disseminate findings that can be translated back into the community. We applied Community-based participatory research (CBPR), strengths-based, and community-driven approaches during this two-year study development phase. We experienced challenges and identified solutions to partnering with one Tribal Nation on an epidemiological mixed-methods study centered on families with children that have prenatal substance exposure. Key inputs were becoming familiarizing with the community setting, structural supports for CBPR research, incorporating Indigenous CBPR principles, and developing a Community Advisory Team. We successfully collaborated with the Confederated Salish Kootenai Tribes Early Childhood Services program to develop a robust study design and a dissemination plan to ensure translation of study findings to the community. The robust study design consisted of common themes specific to a highly stigmatized study population, substance-abusing pregnant women, to protect participant confidentiality. Research alignment with community goals, allotting meaningful time to develop a research partnership, and incorporating culturally sensitive and community-relevant measures contributed to the successful development of an effective and rigorous study to better serve the Tribal Nation on addressing substance misuse.

Keywords:

• Community-driven approach
• strengths-based approach
• CBPR
• Native Americans
• prenatal substance exposure

Introduction

Tribal Nations are sovereign nations that are recognized by the federal government as having the right to self-govern to enact tribal laws and policies within their communities (Rhoades, 2001) . They have historically experienced a range of policies that have led to extermination, forced assimilation and neglect (Strommer & Osborne, 2014). Such policies had debilitating consequences for the few remaining tribes. Clinician and researcher, Maria Yellow Horse Brave Heart, summarizes historical trauma as the, “…cumulative emotional and psychological wounding, over the lifespan and across generations, emanating from massive group trauma experiences.” (Yellow Horse Brave Heart, 2003, p. 7). The consequences from the horrific historical traumas that are omnipresent among Native Americans (Native) partly explain why Native populations continue to experience significant health disparities. The loss of traditional transference of knowledge and practice can be partly attributed to forced attendance in boarding schools that has led to significant detrimental outcomes across generations of tribal people including the spread of uncommon diseases, substance misuse, depression, suicide and domestic abuse (Dixon & Roubideaux, 2001). Risk factors for substance abuse among Indigenous pregnant women were having experienced poverty, unstable housing, low education attainment, child welfare system involvement, sexual abuse, or had a parent attend a residential school (Shahram et al., 2017).

The impact of intimate partner violence observed on Native American reservations is associated with depressive symptoms, comorbidities, and drug problems; however, high social support moderated the association for depressive symptoms among women (Schultz et al., 2021). To understand what place-specific resilience and protective factors might exist for a Tribal Nation to heal from historical and contemporary traumas, researchers should become familiarized with their tribal community partner and vice versa.

Conducting rigorous epidemiological research with Indigenous communities is critical to identify and reduce disease burden. A history of mistrust exists between Natives and researchers as evidenced by historic cases such as the Havasupai Tribe Diabetes Project where researchers misled the tribe in the use of their data. Past researchers have failed to adequately inform Native participants of the study and study findings, and in many cases failed to provide contact information with participants creating a relationship of distrust (Goodman et al., 2018). Several studies have found incorporating Community-Based Participatory Research (CBPR) approaches not only aids in building a community-research partnership, but such approaches enhance study rigor and effectiveness, and promote trust, respect, and overall positive collaboration (Christopher, 2005; Christopher et al., 2011; Crump et al., 2020; Hicks et al., 2012; Lonczak et al., 2013; Rasmus et al., 2020; Walls et al., 2019).

Community-research partnerships are critical to establish to ensure community participation and to guide measurement decisions to promote an overall effective and robust study design (Walls et al., 2019). Efforts from the National Institutes of Health (NIH) continue to support responsible Indigenous health research, such as the Intervention Research to Improve Native American Health (IRINAH) consortium (Whitesell et al., 2020). A need exists to support more rigorous research that holds promising prevention efforts among Native communities (Crump et al., 2020). The process to establish a successful research partnership is of paramount concern. A substantial amount of time is often required to avoid adverse consequences. For example, limited time might impact researchers’ efforts to translate and disseminate study findings back to the community which risks the established trust between the Tribal Nation and researchers (Gittelsohn et al., 2020). Recommendations during this time-intensive process include becoming familiarized with tribal sovereignty, ensuring adequate informed consent, understanding the local code of ethics and intellectual property rights, and ensuring respectful implementation of CBPR approaches, such as obtaining approval through local leadership groups (e.g., culture/elder committees, Tribal Council, local Institutional Review Board) to avoid unintended negative consequences which all aid to promote an equitable partnership (Burhansstipanov et al., 2005; Harding et al., 2012).

The authors’ hold differing perspectives and positions in relation to the partnering tribal community, the Confederated Salish and Kootenai Tribes (CSKT) in the Flathead Nation. Helen is an enrolled member to the Chippewa-Cree Tribe, was raised on the Rocky Boy Reservation, and is a doctoral candidate at a university. She has a shared collective knowledge that many Natives experience, but this knowledge is not specific to the CSKT Tribal Nation. Niki is an enrolled member to CSKT and lives in the Flathead Nation. Her study role primarily consisted of a community liaison to support respectful community engagement. Shanley is not an enrolled CSKT member, but resides in and works for the CSKT Tribal Nation. She is a licensed clinical social worker and served on the Community Advisory Team for this study. Erin is a university professor and research advisor to the lead author. This work is her first experience working with Tribal Nations and with this community.

The overarching study goal is to improve outcomes for children ages 0–3 years old with prenatal substance exposure. Our objective is to describe the process, in terms of strengths and challenges, with the aim of partnering with a Tribal Nation to implement a robust research study that includes substance-abusing pregnant women and children with prenatal substance exposure. We share challenges and solutions from the development phase with the intention to guide future collaboration between Tribal Nations and research teams that wish to conduct community-based participatory research studies on a sensitive subject among a highly stigmatized population.

Methods

We aimed to collaborate with the Confederated Salish and Kootenai Tribes (CSKT) using community-driven, community-based participatory research (CBPR), and strengths-based approaches to identify and measure resilience-promoting interventions that exist for young children with a prenatal substance exposure that reside within the CSKT Tribal Nation. Relationship-building strategies involved becoming familiarized with the CSKT community, structural supports that promote a CBPR study by utilizing expertise and support from our primary sponsor, applying Indigenous CBPR principles to study steps, establishing a Community Advisory Team, and requesting guidance, review and approval of study-related activities and materials from the Advisory Team and various leadership groups within CSKT.

Tribal nation: community setting

Each tribal community holds diverse values, languages, and histories (Whitesell et al., 2020). We as Native and non-native researchers acknowledged this diversity within the Confederated Salish and Kootenai Tribes (CSKT). An extensive portion of the study timeline occurred during this development phase to become familiarized with the CSKT Tribal Nation. This Tribal Nation located in northwestern United States is comprised of just over 10 towns that range from rural and isolated to non-metro urban. Although the towns are spread apart, and would not necessarily be considered one community, the nature of being in the Tribal Nation creates a unique community ecosystem that includes both Native and non-native members from a number of these towns. Approximately 5,400 enrolled members reside in the community that encompasses over 1 million acres and lies within four counties. This community has several strengths. Strengths most directly impacting this study include a tailored early childhood intervention for families with and without a substance use history, community-initiated Salish and Kootenai language immersion programs available across the life course, and home-visiting programs that have the capacity to implement evidence-based early interventions for children ages 0–5 years.

The present aim is to describe the methodology to develop an epidemiological study to be conducted among families to children with and without prenatal substance exposure within the CSKT Tribal Nation. This research is especially timely for CSKT. Community efforts that promote wellbeing among families to children with prenatal substance exposure were underway prior to the start of the study. Wrapped in Hope and Bridge to Hope are two examples of local community efforts to address the growing concern of substance-abusing pregnant women that reside within the Tribal Nation.

Research center and cores

The American Indian and Alaska Native Clinical and Translational Research Program (AIAN CTRP) is the primary sponsor for the development phase of this study and is funded by the NIH National Institute of General Medical Sciences (NIGMS). The primary goal of the AIAN CTRP is to build research capacity in Native communities and provides the following cores that house resources to investigators: (1) Community Engagement and Outreach; (2) Pilot; (3) Professional Development; and (4) Research Design Epidemiology and Biostatistics. The research team utilized all cores throughout the development phase of this study with primary support occurring from the Community Engagement and Outreach (CEO) Core. Cores support grant application submission, advanced training opportunities, review and guidance of research design, and partnering with communities.

Structural supports to promote CBPR approaches were evidenced through the AIAN CTRP’s CEO Core via the following two key features: (1) requiring a dissemination plan of translated study findings back to tribal communities embedded within the award application; and, (2) employing a dedicated staff person acting as a community liaison who is also a tribal member that lives within the CSKT Tribal Nation. The community liaison provided several opportunities for research staff to meet with two Tribal Nations that engaged in community-directed programs tailored to the study target population, families to children with prenatal substance exposure. She also shared the benefits of implementing a memorandum of agreement between study partners.

Application of Indigenous CBPR principles

The study process contained several steps that demonstrated Indigenous CBPR principles that were developed in the context of 12 Montana tribes (Christopher et al., 2011). Table 1 depicts the nine principles and examples from the current study that align with community participation and collaboration.

Table 1. Application of study activities to Indigenous CBPR Principles.

Indigenous CBPR Principles		Study Examples
1. Acknowledge historical experience	→	Local tribal college Institutional Review Board (IRB) holds primary restrictions and oversight of research.
2. Recognize tribal sovereignty	→	Development awards provides time for study development and community relationship building.
3. Differentiate between tribal and community membership	→	Involve tribal members in the study design as either key stakeholders or Community Advisory Team (CAT) members and co-present to tribal leadership groups.
4. Understand tribal diversity and its implications	→	Present study proposals to tribal leaders and incorporate shared tribal knowledge; participate in community events when invited; collaborate with CAT to develop this article.
5. Plan for extended timelines	→	Receive additional, two in total, development awards to allow for extra time to establish community partnerships.
6. Recognize key gatekeepers	→	Leverage Community Engagement and Outreach support to be introduced to key community stakeholders.
7. Prepare for leadership turnover	→	Draft Memorandum of Agreement (MOA) with primary partner to ensure continuity of study.
8. Interpret data within the cultural context	→	Present qualitative study results to tribal leaders for interpretation and context.
9. Utilize indigenous ways of knowing	→	Key stakeholders are Indigenous and/or reside in the Tribal Nation; on-going in-person meetings with primary study partner; hire Indigenous doctoral student.

The study team participated in over 15 in-person conversations with key stakeholders, such as a tribal councilwoman and a tribal-owned home-visiting program, across the CSKT Tribal Nation to identify a primary community partner. Tables 2 and 4 provide additional details of key stakeholders (Table 4) and a timeline of research activities (Table 2). Principle 9, Utilize indigenous ways of knowing resonated with our study. The contribution of Native researchers and CSKT Tribal Nation stakeholders have shaped the selection of questions. Native researchers who engage in academic research further benefit a research study by having both western knowledge and the lived experience as a Native (Christopher et al., 2011). Kovach describes the importance of researchers to self-identify their standpoint in a study as an Indigenous research methodology given that an investigator’s knowledge, training, and experiences help shape the overall study (Kovach, 2010). The first author is Native and shares the lived experience of growing up in a Tribal Nation in Montana and was a doctoral student at the time of this study, which supported the importance of encouraging more Indigenous investigators (Gittelsohn et al., 2020). This standpoint informed the future study design, such as applying probes for historical and contextual barriers.

Table 2. Project development timeline.

	2017		2018				2019
	Summer	Fall	Winter	Spring	Summer	Fall	Winter	Spring	Summer	Fall
Notice of development and pilot awards		X				X				X
CEO Core connect		X	X	X	X	X	X	X	X	X
Recruit Native student			X
Recruit CAT members			X	X	X
Individual and group CAT meetings			X	X	X	X	X	X	X	X
AIAN CTRP Meeting				X				X
CSKT community events*					X
CSKT Tribal Council meetings and presentations						X	X	X
Culture/Elder Committee presentations								X
Partner with ECS								X	X	X
Obtain local tribal IRB approval									X
Develop and update MOA									X	X
Conduct first study									X
Disseminate preliminary study findings to ECS									X	X

Acronyms. Native, Native American; CEO, Community Engagement and Outreach (CEO); AIAN CTRP, American Indian and Alaska Native Clinical and Translational Research Program; CAT, Community Advisory Team; CSKT, Confederated Salish and Kootenai Tribes; ECS, Early Childhood Services (primary study partner); IRB, Institutional Review Board; MOA, Memorandum of Agreement.

Notes. *Community events consisted of a local powwow/celebration and health fair.

Table 4. Community engagement activities and subsequent outcomes.

Community Leaders and Programs	Activity	Outcome
Two Culture/Elder Committees	Presentation of study proposal	Approved with minor revisions
Tribal Council	Presentation of study proposal	Approved with minor revisions
Councilwoman	Meetings to discuss study proposal and provide updates	Support and guidance
Tribal Health Department	Presentation of study proposal; meeting with department head	Support; Two Community Advisory Team (CAT) members
Tribal-owned home-visiting program	Presentation of study proposal; meeting with department head	None
Local hospitals with innovative programs for substance-abusing pregnant women	Presentation of study proposal; meeting with clinical staff currently serving target population	Support; CAT member; in-progress partnership to recruit participants
Federally funded HeadStart program	Presentation of study proposal; meeting with department head	Support; primary study partner; dedicated staff and space for study activities.

Indigenous CBPR principles were also incorporated through use of the local tribal college Institutional Review Board (IRB) (Christopher et al., 2011). The local tribal IRB maintains primary oversight and approval of the research that emerged from the development work. We adapted the tribal college-approved consent form to include additional safeguards to maintain participant confidentiality and offer in-person support, such as describing the study during the consent process, from Early HeadStart Family Advocates, who are employees with our primary study partner, CSKT Early Childhood Services (ECS) and have established relationships with Early HeadStart families.

Community advisory team

A major component in this development phase was developing a Community Advisory Team. Advisory Team members lived and worked in the CSKT Tribal Nation. They are tribally enrolled, non-enrolled Native American, and non-native. All four had either professional and/or personal experience in working with the study population, including one member being heavily involved with a community initiative that addressed the needs of substance-abusing pregnant women. Research staff and Advisory Team members met regularly, both individually and as a whole group, to review all aspects of the study. Members committed to review and approve the following items: (1) research question; (2) study design including tools, presentations, papers, marketing, and recruitment materials; (3) community and stakeholder dissemination plans; and (4) translation of findings back into the community.

Advisory Team members and the community liaison identified key stakeholders within the community, and attended in-person meetings and presentations with community leaders. Through the Advisory Team members’ critical involvement, we ultimately identified our primary study partner, CSKT Early Childhood Services. Several meetings and presentations occurred across the community with respective leaders and potential partners. With support from the Advisory Team, we presented to and met with the following tribal community leadership groups where we received input and approval of the study proposal: Tribal Council, two Culture/Elder Committees, and local tribal college IRB.

An Advisory Team member invited research staff to attend local community events to help familiarize ourselves with CSKT and vice versa. Our intention was to establish a long-term relationship with the CSKT Tribal Nation that is built on trust and respect. Attending any local events, especially when invited, was critical to establish rapport with key stakeholders and community partners. The first author also gained unanticipated tribal and community knowledge after spending time at the local annual powwow/celebration and tribal health fair.

Results

Results involved developing a: (1) successful research-community partnership; (2) robust study design; and (3) dissemination plan with efforts to translate study findings back to the community. This development period occurred from August 2017 until July 2019. A detailed development study timeline is provided in Table 2. The bolded items indicate study results that are attributed to the several CBPR-related activities listed in the table.

Partnership development

There were several challenges that occurred during the process of developing a research partnership with a Tribal Nation. Table 3 briefly lists the key challenges and subsequent solutions.

Table 3. Research partnership development: Key challenges and solutions.

Challenges	Solutions
Identifying study community partner aligned with study question.	Establish Community Advisory Team (CAT); Host several meetings in community.
Recruitment: Study population may be indirectly identified by recruitment flyer.	Include families with children without prenatal substance exposure to avoid indirectly identifying families with a history of substance exposure.
Recruitment: Barriers, such as childcare, loss of wages and transportation may occur for caregivers.	Receive direct support from Family Advocates to recruit participants and provide childcare and transportation to caregivers participating in an interview. Participants also receive monetary compensation for their time.
Compensation: Community partner is not able to enter a sub-contract with the research team.	Establish a Memorandum of Agreement between the research team and community partner to detail compensation for specific activities and resources.
Time to successfully partner with Tribal Nation	Request and receive an additional year of development award funding.

A key challenge was to identify a primary tribal community partner who aligned with the study question that was derived from conversations with Advisory Team members. This was challenging primarily due to leadership turnover. Meetings and presentations were postponed for several reasons. Inclement weather and community funerals were two examples of postponing meetings and presentations. For example, the presentations to the two Culture/Elder Committees where we sought to request review and approval of our study proposal were postponed for three months due to back-to-back funerals, confirming the importance of planning for extended timelines (Christopher et al., 2011). For background, the Culture/Elder Committees only plan for one monthly meeting, presenters must be approved by their leadership to be added to agenda, and the buildings where presentations would occur also host wakes otherwise referred to as funeral services, community events, and community meetings.

Key solutions were having in-person meetings in the tribal community and attending local community events when invited by Advisory Team members, which helped researchers better understand the community context, strengths and needs. Secondly, the researchers maintained communication by telephone with the Culture/Elder Committees with the intention of valuing the importance of community approvals, particularly among elders, when conducting research. This led to the successful presentation of the study proposal to both the Salish and Kootenai elders where researchers received approval and instrumental revisions that were incorporated into the study design. Researchers successfully partnered with the CSKT Early Childhood Services (ECS) program after a few in-person meetings directly supported by Advisory Team members.

In-person conversations were imperative to develop the ongoing partnership with ECS. During these conversations, the ECS Department Head and research staff discussed the overall study, including the study questions and design, and identified an aligned vision and goal for families. ECS is an ideal community study partner as they serve our target population, families to young children with prenatal substance exposure. They actively promote early caregiver-child engagement opportunities through HeadStart programs, home-visiting programs, communication of local resources, and by hosting family-friendly community events that include the in-house Salish language immersion program, family dinners, home visits, cultural activities like powwows/celebrations and traditional beading. ECS’s collaboration and commitment to the study goal had also informed the study design and supported the successful completion of the subsequent qualitative study.

Memorandum of agreement

To formalize the partnership with the primary study partner, we entered into a Memorandum of Agreement (MOA). Challenges have occurred regarding legal differences between the tribe and the university legal counsels that required nearly a year for the MOA to receive approval. As a result, the MOA is specific and detailed to ensure the study is described in a comprehensive manner with the protection of the study participants at the core. The MOA offers several benefits: access and flexibility for the primary study partner to allot money to their programs and services; a detailed study design that includes agreed upon activities by party; and it acts as an official agreement between the university and the tribe allowing for continuance of the study should there be leadership turnover.

Tribal ownership of data. Tribal ownership of the de-identified data is a primary component of the study plan. Tribal ownership of data and study materials are critical practices to building trust and maintaining a long-term partnership (Nash et al., 2019). The American Indian and Alaska Native Clinical and Translational Research Program (AIAN CTRP) shared on the importance of data sovereignty. The research team acknowledged this by adding data-sharing and data transfer criteria which is detailed in the “Intellectual Property” section in the MOA designating that de-identified study findings ultimately belong to the CSKT Tribal Nation, particularly the community partner. Approval is required from the community partner to determine when and with whom study findings are disseminated. The approval process outlined in the MOA includes safeguards for the sharing of data with the primary goal being that the tribe has information (e.g., contact information) to access any de-identified data.

Robust study design

We presented the proposed community-informed study to four tribal leadership groups (Tribal Council, two Culture/Elder Committees, tribal IRB) as part of a formal and informal process to receive community approval and ensure opportunities are available to incorporate community knowledge into the study design. Table 4 provides details of community leaders and programs, along with subsequent research team activities, and final outcomes. Key stakeholders, such as a councilwoman, have personal and/or professional experience in working with the study target population and provided input through in-person meetings. This councilwoman also provided guidance and support of the study topic. Key community leaders included two Culture/Elder Committees composed of Salish and Kootenai elders, and the Tribal Council. We incorporated all suggested revisions. For example, the newly implemented Salish language immersion program was added to our study tool as a resilience item at the request of the Tribal Council and the Salish Culture Committee during our in-person study proposal presentations. Interest and approval with revisions of the study proposal always occurred as part of in-person conversations and presentations.

A review of the literature also helped to refine the study question and study design with review and approval from key community stakeholder groups: tribal IRB, Culture/Elder Committees, Tribal Council, Advisory Team members, and the primary study partner. It is well known that diversity exists across Native American populations and adapting research strategies to the culture and community contexts is important to support community engagement and adoption of study findings (Whitesell et al., 2020).

Lastly, the structure and resources of the grant mechanism/funder, the AIAN CTRP, led to several beneficial study outcomes. First, formative conversations discussed study tools and we avoided seasonal variability of the amount and type outdoor activities that families engaged in to promote a more robust study design. Second, the structural support through the Community Engagement and Outreach Core laid the foundation to apply a CBPR approach to our study by establishing a Community Advisory Team and a dissemination plan to translate study findings back to the community. Third, the community liaison was pivotal in aligning the study question with the appropriate Tribal Nation, and the liaison also created opportunities for research staff to meet with community gatekeepers to increase study support.

Qualitative study component

As part of the CBPR process, study and community partners identified the need for a small-scale qualitative study with the goal of identifying barriers and facilitators to family-child engagement activities across four domains (cultural, community, outdoors, and home) among families to children with and without prenatal substance exposure in the Tribal Nation. Community-tailored and culturally sensitive study tools did not exist prompting the need for a qualitative study prior to the quantitative study. The qualitative study outcomes will inform: (1) a continuous study tool comprised of positive caregiver-child engagement activities identified by the qualitative study that will capture the duration and how often caregivers and their child engage in a given activity; and, (2) Early Childhood Services of potential unmet needs among families who participate in their programs and services; and, (3) the community leaders on the perceived benefits of the Salish language immersion program.

Study population considerations

Substance use during pregnancy is a sensitive topic and required additional safeguards (e.g., see “Title 42 Code of Federal Regulations Part 2”) to protect participant confidentiality. That is, patients with a substance use disorder (SUD) are a protected class with extra regulations under the Health Insurance Portability and Accountability Act (HIPAA) to protect disclosure of individuals diagnosed with SUD. Expanding our target population to also include children without prenatal substance exposure removed the possible indirect identification of participants who have children with prenatal substance exposure. Several meetings with Advisory Team members and the community partner led to this decision based the Tribal Nation being a heavily interconnected community. Further discussion with community members also led to inclusion of families that are not Native American or tribal members but reside in the Tribal Nation. This decision was based on the diversity within this Tribal Nation, where only one-third of the residents are enrolled tribal members.

Shaping the informed consent process

A review of the literature, multiple meetings and presentations with the primary study partner, Advisory Team members and the tribal college IRB helped inform and shape the informed consent form. As part of this process, training would be provided to both Family Advocates and research staff on administering informed consent and offering additional verbal description if participants requested clarification of what would be asked of them. The informed consent process incorporated both oral and written communication of the study and included contact information for both research investigators should the participants have any questions. Family Advocates have established relationships with the community and the Early HeadStart family participants, providing participants a sense of trust.

Dissemination plan

Primary constructs of CBPR are the returning of research findings to the community partner and determining how findings will be disseminated and translated (Wallerstein et al., 2017). A dissemination plan was developed in collaboration with Advisory Team members and the Early Childhood Services (ECS) community partners, both of whom were invited to be coauthors on publications, have agreed to review, provide approval, and support dissemination of study findings (e.g., study updates, study proposals). Study results are to be presented in an understandable, relevant, and accessible way to community members, ECS staff and families, and community leadership groups (e.g., Tribal Council, Culture Committees).

Specific language was added to the MOA to formalize the dissemination process. The dissemination plan outlines that ECS may leverage study findings to apply for tribal- or community-level grant funding, and ECS will utilize study findings to inform their current services and programs. This utilization of the study findings is one part of an effort to establish trust between the community and the research team. Both parties agree the de-identified data ultimately belongs to the community and that community directly benefits by applying for additional resources and receiving information regarding their programs and services. Researchers will continue to seek approval from the primary study partner, the AIAN CTRP community liaison, key community leaders, and Advisory Team members concerning the publication and presentation of study findings.

Discussion

Research staff met with tribal stakeholders across the Confederated Salish and Kootenai Tribes (CSKT) to identify community needs and interest in engaging in research. These meetings led research staff to focus on identifying and measuring family-child engagement activities as resilience factors against developmental and behavioral dysfunction among children with and without prenatal substance exposure. These findings will be shared in a subsequent publication that will discuss the qualitative study phase of the on-going study. Community-driven, CBPR and strengths-based approaches informed and shaped the overall research design which showcased the innovative programs and interventions available in CSKT Tribal Nation. Consulting key community stakeholders to determine alignment of the study design is one example of acknowledging historical experience by providing an opportunity for an Indigenous community to place restrictions and oversight on research before it occurs (Christopher et al., 2011). Native and non-native stakeholders that serve the CSKT Tribal Nation hold knowledge and experience with the study topic and helped shape the study so that is was of importance and relevance to the Tribal Nation. Their feedback helped to ensure study questions were relevant, of interest, and importance to the Tribal Nation.

We applied CBPR approaches such as becoming familiarized with the community and planning for extended timelines which are recommended CBPR practices when conducting research with Native populations (Christopher et al., 2011). The funding mechanism provided structural supports (e.g., development funding, community dissemination plan, community liaison staff) that were instrumental inputs in providing the research team with ample time to visit and successfully partner on a CBPR study with the CSKT Tribal Nation.

To honor tribal sovereignty, the authors acknowledge that study findings ultimately belong to the tribal community (Christopher et al., 2011; James et al., 2014; Nash et al., 2019; Thomas et al., 2011; Whitesell et al., 2020). To safeguard participant confidentiality, both parties understood that the primary study partner would have full access to all de-identified data. Study tools were developed to allow for collection of data and to allow for translation of findings so that the primary study partner would be able to leverage those results. For instance, additional questions were included in the study tool to determine participation and perceived benefits of Early Childhood Services (ECS)-specific programs and services.

Key community stakeholders raised concerns about the common and problematic “helicopter researcher” that enters a community, gathers data, benefits from the collected data, and offers no benefit back to the community, which has created a history of mistrust between tribal communities and researchers (Christopher et al., 2011; James et al., 2014; Nash et al., 2019; Thomas et al., 2011; Whitesell et al., 2020). As part of the study proposal process, the research team was intentional about continuing to engage in future research and ensure translated study findings are disseminated to community stakeholders.

Next steps are to continue presenting study findings across the CSKT community as part of the dissemination plan, implement the epidemiological study as part of the mixed-methods study design, and continue collaboration with the CSKT ECS partner to identify future research that would produce impactful interventions in the context of families to children with prenatal substance exposure.

Promising practices and lessons learned occurred throughout this development phase. Our aligned goals among the CSKT leadership groups and the ECS community partner created a strong investment to identify what factors may help to improve the quality of life for families with a history of substance misuse that reside in Tribal Nations.

Acknowledgments

We dedicate this paper to Jeanne Christopher, Paula Wofford and the Family Advocates with Early Childhood Services. Without their commitment, this work would not be possible. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Disclosure statement

The authors report no relevant disclosures.

Additional information

Funding

Research reported in this publication was supported by the National Institutes of Health (NIH) National Institute of General Medical Sciences under Award Numbers U54GM115371 and P20GM130418 and by the NIH Office of the Director, ECHO IDeA States Pediatric Clinical Trials Network under Award Number UG1OD024952.