Exploring the perspectives of community members as research partners in rural and remote areas

Abstract

Background: Community engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased barriers to participation in health research and may be unjustly excluded from participation. It is necessary to understand the process of patient and public engagement from the perspective of community members to support partnered research in underserved areas. The aim of this project was to increase understanding on how to include community members from rural and remote areas as partners on research teams. Methods: Using purposive sampling, we completed semi-structured interviews with a representative sample of 12 community members in rural and remote areas of northern British Columbia, Canada. Interviews were audio recorded and transcribed verbatim. Following an integrated knowledge translation approach, an inductive thematic analysis was completed to incorporate researcher and knowledge user perspectives. Results: The factors important to community members for becoming involved in research include: 1) relevance; 2) communication; and 3) empowering participation. The analysis suggests projects must be relevant to both communities and individuals. Most participants stated that they would not be interested in becoming partners on research projects that did not have a direct benefit or value for their communities. Participants expressed the need for clear expectations and clarification of preferred communication mechanisms. Communication must be regular, appropriate in length and content, and written in a language that is accessible. It is essential to ensure that community members are recognized as subject matter experts, to provide appropriate training on the research process, and to use research outcomes to support decision making. Conclusions: To engage research partners in rural and remote communities, research questions and outcomes should be co-produced with community members. In-person relationships can help establish trust and bidirectional communication mechanisms are prudent throughout the research process, including the appropriate sharing of research findings. Although this project did not include community members as research team members or in the co-production of this research article, we present guidelines for research teams interested in adding a patient or public perspective to their integrated knowledge translation teams.

Co-production as a co-creation or co-destruction process? An internal evaluation of a co- production exercise with family caregivers living in a rural and remote area  

“…Although they face several challenges in participating, i.e. long distances, cultural barriers and lack of con dence, their opinion is crucial for understanding how to modify and shape traditional urban practices in rural and remote areas [26].…”

“…In particular, several negative experiences of co-production have arisen from the involvement of vulnerable and marginalized service users, such as patients [20][21][22], family caregivers [23] and asylum seekers [24]. Indeed, vulnerable and marginalized users may be unwilling or unable to participate [25,26] and may not have the abilities necessary to collaborate in partnership with providers [27]. For this reason, their involvement in co-production activities is still an open question [28,29] especially in the health and social care eld [15].…”

The Potential Pitfalls of Co-production: An Overview on the Co-design of Public Services with and for Family Caregivers Living in Rural and Remote Area

“…Although they face several challenges in participating, i.e. long distances, cultural barriers and lack of con dence, their opinion is crucial for understanding how to modify and shape traditional urban practices in rural and remote areas [23].…”

“…Second, providers should build trustful relationships with vulnerable users. As highlighted by Pelletier et al, the lack of strong relationships among actors makes users feel abused by researchers, as they do not feel part of the research project [23]. Third, users should have all the abilities necessary to collaborate in partnership with providers, especially in the healthcare sectors where the disparity of competences, skills and knowledge between users and professionals is high [40,41].…”

“…The current literature is challenging the possibility to involve vulnerable and disadvantages users in the co-production activities as it may affect negatively both the service system and the well-being of these actors [21]. Indeed, vulnerable and hard-to-reach citizens may be unwilling or unable to participate [22,23] and may not have the abilities necessary to collaborate in partnership with providers [24].…”