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

Figures & data

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.

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.

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.