Participatory research: A promising approach to promote meaningful engagement

A participatory approach to research has gained momentum in the health and social sciences, giving voice to individuals who otherwise have few opportunities to influence research endeavors, yet have a wealth of experiences of great value and relevance in knowledge building. Taking a glimpse back to early participatory approaches undoubtedly includes a read of Kurt Lewin who coined the term Action Research [1]. He argued that research is relevant when it is grounded in the realities of the poor and leads to action [1]. Fals-Borda [2] expanded this concept by adding the term Participatory to Action Research, followed by the work of Hall [3] with indigenous communities. Influenced by Freire’s theory of critical consciousness [4]; empowerment theory [5]; and specific movements in the United States such as the Civil Rights Movement and the feminist movement [6–7], among others, use of CBPR and participatory approaches to research (see [8–9]) gained momentum in times when scholars were examining methodological approaches to address participation and health disparities. Both CBPR and Participatory Action Research (PAR) often refer to the research tradition of researchers, practitioners, and community members collaborating to address health and social challenges that matter to communities [8,10].

Strong evidence indicates health and participation disparities and barriers to positive outcomes are widening among communities facing marginalization [11–12]. Occupational therapists, among other health professions, address these disparities with individual clients and communities by promoting participatory research and practice that supports the wellbeing and engagement in meaningful occupations for all citizens. The last 20 years in occupational therapy and occupational science have been marked by pursuing new ways for universities and communities to work together to address pressing health and social issues impacting occupational engagement. From the early work of Townsend and Wilcock on occupational justice [13], to the introduction of the Scholarship of Practice (SOP) model [14], to multidisciplinary community partnering [15], and the revised model of SOP [16] to name some, scholars have proposed non-traditional strategies of collaborating with communities [17]. Consistent with a participatory approach to research, SOP emphasizes occupational therapy scholars, practitioners, and community members collaborating to co-create knowledge and develop relevant solutions to participation and health challenges within communities. An SOP model values linking theoretical and empirical knowledge to real world issues of practice and clients’ everyday lives [16]. Within this model, practitioners, scholars and communities inform each other, respect each others’ knowledge, and work together to impact scholarship and practice. This inclusive approach to community collaboration can be a powerful tool to drive research forward. Groups that can benefit from this approach include those populations with a history of global marginalization such as people with disabilities, individuals with chronic health conditions or rare diseases, families of children with disabilities, immigrants and refugees, older adults, and low-income communities.

When we take a closer look at CBPR as an approach to research [10,18], diverse frameworks appear in the literature. Examples include: Participatory Action Research (e.g., [19–20], CBPR (e.g., [8]), participatory community methods (e.g., [21–22]), and participatory visual methods [9,23–28]. Each of these illustrations call for working together with the community. In approaching social and health challenges in this way, CBPR teams strive for social and systems changes in practices, programs/services, and policies as well as for the co-creation of products the community can utilize. Balcazar et al. [29] has asserted that there are different levels of community participation in research activities in a continuum from equal involvement in all decisions and aspects of the research process, to involvement in some aspects of the research process such as identifying the issues and solutions, and/or taking action. Regardless, the voices of those most impacted by the participatory research endeavor (often referred to as participants, members, or citizens) is in focus [30]. According to Balcazar et al. [29], community participation in research needs to be meaningful and substantial; desires of the participants should drive the research process. The continuum of participation suggests an increasing commitment from the researchers to collaborate in meaningful ways with the community. Such meaningful collaborations imply attending to issues of power and cultural differences, valuing the knowledge coming from participants and caregivers, and forming mutually respectful collaborations [18]. Importantly, participatory approaches are grounded in principles of social justice [31], Scholarship of Practice [17], emancipatory and collaborative research relationships [18].

Rooted in a long history of ideas, there are myriad relevant ways to utilize participatory methods in research within occupational therapy and occupational science. Scholars have utilized a variety of methods including photovoice, participatory needs assessment, Concerns Report Method, and focus groups, among others. The diverse methods described in this special issue consistently attend to the voices of people with disabilities or chronic health conditions, caregivers, and older adults, allowing their everyday experiences to impact the research endeavor. There were many valuable submissions made to this special issue and although we would have liked to include more manuscripts, this was not possible. In an attempt to represent different types of participatory methods and approaches, a selection of articles was made for this issue.

The following is a short synopsis of the manuscripts included in this issue. Leclair, Ali, and Finlayson drew on the Concerns Report Method to engage community members in a systematic participatory process. An innovative aspect in this study was the active involvement of a parent coalition with researchers in exploring occupational development among children. Also involving stakeholders, Lauckner, Fenton, Gallant, White, and Taylor drew on participatory methods in involving persons with mental illness (First Voice perspective), and innovatively bridged collaboration between mental health, recreation, and academic sectors. An innovative aspect in this is the integration of first voice perspectives. Kramer and Schwartz drew on participatory methods in assessment development. In their study, young adults with developmental disabilities, health professionals, and assessment experts were involved in co-constructing a relevant conceptual framework, developing assessment content, and refining the instrument. Involving young adults with disabilities as research collaborators in this way can contribute to new innovations within the development of assessments.

In this issue, different ways of applying CBPR approaches – particularly those with a visual focus – are also illustrated. Gustafsson, Falk, Tillman, Holtz and Lindahl studied life filming as a participatory approach. Although the analysis in this case did not follow participatory methods per se, the intent of the study was to explore the methodological match between life filming and a participatory approach. In the area of visual research and participatory approaches, this opens up for valuable further dialogue and exploration. Mälstam, Bensing and Asaba used photovoice with a new population—persons with a rare disease—to both explore challenges in everyday occupations and develop knowledge about everyday life with a rare and mostly invisible disease for citizens and professionals. Although differing in approach from that of Mälstam et al, St. John, Hladik, Romaniak, and Ausderau also used photovoice methods. In this study, St. John et al. selected two members from a broader group of community members to utilize photovoice methods in exploring barriers and facilitators in accessing health-promoting occupations among adults with intellectual disabilities. This study provides possibilities for adaptations to photovoice and for its use with persons with intellectual disabilities. Heffron, Spassiani, Angell, and Hammel used a combination of photovoice and other participatory methods in an innovative, multiple phase process. Heffron et al. focused on environmental barriers and supports among persons with intellectual and developmental disability. Much like St. John et al, the authors make an arguement for a need to include voices of people with intellectual and developmental disabilities and that participatory methods provided a valuable tool to this endeavor. Finally, Suarez-Balcazar, Early, Maldonado, Garcia, Arias, Zeidman, and Orozco innovatively draw on a community-based participatory approach to involve Latino immigrant families with young adults with disabilities in the co-creation and pilot testing of a health intervention designed to address and explore health disparities.

In all, the articles in this issue illustrate a solid overview of diverse participatory methodologies that give voice to individuals that otherwise have little-to-no opportunity to influence research endeavors or facilitate the creation of new knowledge. Moreover, the articles contribute to the growing body of literature on occupational therapy addressing marginalized communities. Future research would benefit from further exploring the role of occupational therapy scholarship and practice in addressing health and participation disparities through participatory methods. Moreover, as literature drawing on participatory methodologies grows, it will also be important to include debate and critical reflection.