Cultural‐centered approaches to adapt a cognitive assessment tool in indigenous communities from Amazonas: the role of participant‐researcher partnerships
Authors: Souza‐Talarico Juliana Nery , Bezerra Camila Carlos , Toledo Noeli N , Duarte Vanessa Vasconcellos 
Published: December 2023

Background

Indigenous are still underrepresented in dementia research limiting advancements for risk reduction and intervention globally. Historical injustice against indigenous communities led to mistrust in the health system and research, representing the roots of current barriers in research participation and assessment. An approach that recognizes the cultural influences and integrates the stakeholders’ perspectives into the study design can promote trustful partnerships and consequently facilitate research participation. Here, we describe the cultural‐centered steps to adapt a cognitive assessment tool in an indigenous community and the strategies to build and maintain a trustful participant‐researcher relationship.

Methods

137 indigenous, 50 years and older (age = 61.7; education = 5.7) from Manaus, Amazonas, Brazil, applied the Brazilian Indigenous Cognitive Assessment (BRICA) tool, adapted from the original Australian version. Group meetings, individual consultations, home visits, written, electronic, and video testimonials were adopted to implement a culture‐centered approach, and to detect related outcomes, and participant‐researcher experiences.

Results

Six culture‐centered steps and related outcomes were detected: 1)connecting research, health system and community stakeholders to discuss study goals and community approach; 2)building the participant‐researcher partnership: professors, interdisciplinary undergraduate students; nursing assistant and community members; 3)disseminating the project using video messages from the indigenous leader and home visits for screening; 4)bringing the community perspectives to BRICA design: first version modified to accommodate language and cultural elements that represented the indigenous reality; 5)collecting data: BRICA applied in individual consultations; and 6)examining community and researcher partnership experiences: interpersonal, linguistic, geographical and safety barriers detected, and strategies implemented; video and written testimonials revealed the stakeholders experiences and study positive impact in the participant‐researcher relationship. Additional benefits included: dementia awareness and concerns among indigenous, primary prevention promoted, participants’ healthcare needs were referred, and researchers detected other conditions for future investigations.

Conclusion

A cultural‐centered approach that integrates the participants' and researchers' perspectives, from the study design to implementation, successfully contributed to adapting an indigenous‐friendly cognitive assessment tool. Our findings suggest that recognizing the historical and cultural influences on the participant‐researcher relationship to design a cultural‐centered approach can contribute to building trustful and sustained partnerships that ultimately overcome the recruitment and assessment barriers in dementia research.