Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm

Abstract

Báa nnilah is a chronic illness self‐management program designed by and for the Apsáalooke (Crow) community. Arising from a collaboration between an Indigenous nonprofit organization and a university‐based research team, Báa nnilah's development, implementation, and evaluation have been influenced by both Indigenous and Western research paradigms (WRPs). Báa nnilah was evaluated using a randomized wait‐list control group design. In a WRP, contamination, or intervention information shared by the intervention group with the control group, is actively discouraged as it makes ascertaining causality difficult, if not impossible. This approach is not consonant with Apsáalooke cultural values that include the encouragement of sharing helpful information with others, supporting an Indigenous research paradigm's (IRP) goal of benefiting the community. The purpose of this paper is to address contamination and sharing as an area of tension between WRP and IRP. We describe how the concepts of contamination and sharing within Báa nnilah's implementation and evaluation are interpreted differently when viewed from these contrasting paradigms, and set forth a call for greater exploration of Indigenous research approaches for developing, implementing, and evaluating intervention programs in Indigenous communities. (Improving Chronic Illness Management with the Apsáalooke Nation: The Báa nnilah Project.: NCT03036189), ClinicalTrials. gov: NCT03036189).

The Báa nnilah Program: Results of a Chronic-Illness Self-Management Cluster Randomized Trial with the Apsáalooke Nation

“…Sharing can diminish comparative group findings in pragmatic clinical trials [ 36 , 37 , 38 ] and hence may have contributed to our non-significant quantitative findings. For more information on sharing within our intervention, see Allen et al [ 39 ].…”

“…This includes community-defined and practice-based scientific evidence that has been utilized for time immemorial within Indigenous communities. Doing so honors and recognizes an Indigenous research paradigm and centers Indigenous voices and methods [ 39 , 51 , 52 , 53 ]. We also suggest that funding agencies promote and accept study designs that are more consonant with Indigenous cultures.…”

Developing and Implementing a Culturally Consonant Treatment Fidelity Support Plan with the Apsáalooke Nation

“…Rather than trying to prevent sharing between intervention and waitlist control conditions, we asked participants in the waitlist control group (n = 93) in a follow-up survey "Have you taken action for your health because of something you have heard or learned from a friend or family member who has attended the gatherings?" [28] (p. 8). This was conducted after the intervention group completed the intervention and prior to the waitlist control group taking part.…”

“…Our results reaffirmed the cultural value of relationality in that we found a high rate of sharing program content between the intervention and waitlist control groups as well as with the community at large. Eighty percent of waitlist control participants responded "yes" to the question of taking action to improve their health based on something they learned [28]. Although within a Western lens, this reduces the ability of researchers to assess program impacts, our partnership saw this as direct evidence the program was working as intended.…”

Is There a Future for Indigenous People? The Application of the Ethnography Future Research to Assess the Indigenous People Sustainability

“…Traditional societies are frequently denied access to information and harassed by researchers [39]. When Indigenous Peoples agree to participate in research, they are subjected to 'helicopter research,' in which researchers arrive, collect data, and then leave the Indigenous Peoples with the data, leaving the community with nothing [26], [40], [41]. Researchers must understand Indigenous Peoples' sovereignty regarding ethical and intellectual property rights as holders of knowledge and data sovereignty [42].…”