Meaningful Engagement in Research: Community Residents as Co-creators of Knowledge

Community psychologists have contributed significantly to the body of literature on community-based participatory research (CBPR) and its application in understanding and addressing health and community participation disparities. At the core of CBPR are mutually beneficial partnerships with communities, whereby community members’ voices are heard and they become co-researchers, helping guide the research process. In this article, I argue that for community psychologists to change the landscape of community participation, health, and well-being disparities experienced by many vulnerable populations who often face multiple forms of oppression, CBPR needs to be transformative and emancipatory. Stakeholders must be meaningfully involved as co-creators of knowledge and promoters of social justice embracing a human rights agenda. Drawing from work conducted with Latinx immigrant families with youth who have disabilities, I propose the following strategies moving forward: promoting meaningful participation of community members as co-creators of knowledge; promoting meaningful conversations that matter to communities; promoting civic engagement, activism, and advocacy; promoting an assets- and strengths-based approach to research; and promoting culturally relevant interventions. Community psychologists have the opportunity to make significant contributions to addressing disparities when community residents’ knowledge is valued and recognized.     

Reconcilable Differences? Human Diversity,Cultural Relativity,and Sense of Community

Sense of community (SOC) is one of the most widely used and studied constructs in community psychology. As proposed by Sarason in (The Psychological sense of community: prospects for a community psychology, Jossey-Bass, San Francisco, 1974), SOC represents the strength of bonding among community members. It is a valuable component of community life, and it has been linked to positive mental health outcomes, citizen participation, and community connectedness. However, promotion of SOC can become problematic in community psychology praxis when it conflicts with other core values proposed to define the field, namely values of human diversity, cultural relativity, and heterogeneity of experience and perspective. Several commentators have noted that promotion of SOC can conflict with multicultural diversity because it tends to emphasize group member similarity and appears to be higher in homogeneous communities. In this paper, we introduce the idea of a community-diversity dialectic as part of praxis and research in community psychology. We argue that systematic consideration of cultural psychology perspectives can guide efforts to address a community-diversity dialectic and revise SOC formulations that ultimately will invigorate community research and action. We provide a working agenda for addressing this dialectic, proposing that systematic consideration of the creative tension between SOC and diversity can be beneficial to community psychology.     

Lessons Learned in Developing a Research Partnership with the Transgender Community

The challenge facing the authors was to develop a relationship with members of the Transgender community in a large urban city in order to develop research that would benefit this group. The situation is presented from the differing perspectives of the three women involved (one Transgender woman and two biological women); they provide their accounts of a meeting with key members of the Transgender community where the challenge became apparent. During the meeting, the issue of representation arose resulting in a discussion of whether the research agenda should be focused on a specific subgroup under the Transgender umbrella or be open to all members of this diverse and underserved group. Reflections on what was learned about the diversity of individuals under the Transgender umbrella and the lessons that helped them respond to the challenge are discussed.     

Relative versus absolute standards for everyday risk in adolescent HIV prevention trials: expanding the debate

The concept of minimal risk has been used to regulate and limit participation by adolescents in clinical trials. It can be understood as setting an absolute standard of what risks are considered minimal or it can be interpreted as relative to the actual risks faced by members of the host community for the trial. While commentators have almost universally opposed a relative interpretation of the environmental risks faced by potential adolescent trial participants, we argue that the ethical concerns against the relative standard may not be as convincing as these commentators believe. Our aim is to present the case for a relative standard of environmental risk in order to open a debate on this subject. We conclude by discussing how a relative standard of environmental risk could be defended in the specific case of an HIV vaccine trial among adolescents in South Africa.     

Students as Members of University-based Academic Research Ethics Boards: A Natural Evolution

University based academic Research Ethics Boards (REB) face the particularly difficult challenge of trying to achieve representation from a variety of disciplines, methodologies and research interests. Additionally, many are currently facing another decision – whether to have students as REB members or not. At Ryerson University, we are uniquely situated. Without a medical school in which an awareness of the research ethics review process might be grounded, our mainly social science and humanities REB must also educate and foster awareness of the ethics review process throughout the academic community. Our Board has had and continues to have students as active members. While there are challenges to having students as Board members, these are clearly outweighed by the advantages, for both the academic community and the future of ethically sound research in the social sciences and humanities. Moreover, the challenges are often based on misconceptions and can be easily overcome through increased education and understanding of the research ethics review process by the academic community at large. The purpose of this paper is to describe and discuss the experiences, advantages and challenges of having students as REB members. The advantages of having students as REB members include the following: (1) Students are the proposed participants in many of our reviewed protocols and student members may illuminate unique issues of participation. (2) Students are active and highly engaged members of the REB. (3) Having students on the REB enhances awareness of research ethics within the University. (4) Student REB members have an opportunity to mentor other students and provide leadership for both undergraduate and graduate students. (5) Students are more vigorously recruited than faculty members and often apply for student positions with enthusiasm and preparation. (6) In creating an atmosphere of excellence in research, engaging students at the beginning of their research career will help in creating tomorrow’s leaders in research and research ethics. The challenges of having students as REB members include the following: (1) Faculty members may be uneasy regarding the prospect of students reviewing protocols. (2) Faculty members may be concerned about confidentiality and respect with students reviewing faculty research protocols. (3) There may be an increased burden for students who serve as members on an REB. (4) There is concern that students will offer less continuous service to the REB. (5) There is a common misconception that students do not have the experience to carry out ethical reviews. While there are challenges from faculty members and others regarding having students as REB members, these challenges are often based on misconceptions about the nature of the REB work and the ethics review process in general. These challenges are also often based on the misconception of the ethics review process as one of peer review and evaluation, instead of a community-based and inclusive process. Having student members is a long-term strategy for both overcoming the misconceptions of the REB as a “necessary evil” and for fostering an awareness of the imperative for ethically sound research in the social sciences and humanities.     

Conducting Health Disparities Research with Criminal Justice Populations: Examining Research,Ethics, and Participation

This study explored the challenges of informed consent and understanding of the research process among Black and Latino men under community supervision (e.g., parole and/or probation). Between February and October 2012, we conducted cognitive face-to-face interviews using open-ended questions on the significant areas of research participation (i.e., the informed consent process, confidentiality, compensation, what is meant by human subject and clinical trials) among 259 men aged 35 to 67 under community supervision in Bronx, New York. Content analysis of the open-ended questions revealed limited knowledge concerning the understanding of research participation. The study participants appeared to generally understand concepts such as compensation after research participation and confidentiality. Participants demonstrated a lack of understanding of certain aspects of the research process—informed consent, human subject, Institutional Review Board, and clinical trials. These findings are informative to researchers conducting studies with criminal justice populations and Institutional Review Boards reviewing research studies.     

Confronting Condescending Ethics: How Community-Based Research Challenges Traditional Approaches to Consent, Confidentiality, and Capacity

Community based research is conducted by, for, and with the participation of community members, and aims to ensure that knowledge contributes to making a concrete and constructive difference in the world (The Loka Institute 2002). Yet decisions about research ethics are often controlled outside the research community itself. In this analysis we grapple with the imposition of a community confidentiality clause and the implications it had for consent, confidentiality, and capacity in a province-wide community based research project. Through untangling these implications we provide recommendations for reframing how to think about research ethics and strategies for enabling research ethics’ processes to be more responsive to and respectful of community-based research.     

Conducting community‐based participatory research in an urban Malaysian community: Lessons learned and challenges in establishing partnerships

This paper presents the process of how partnerships are established between an urban residential community and an academic institution in Malaysia by employing community‐based participatory research, which involves researchers, community members, and organizational representatives as coresearchers. The research process encompasses colearning, power sharing, and coconstructing of knowledge, with the community members driving the research direction. The research paradigm is grounded on conducting research with the community. This paper highlights the experience and lessons learned while applying the principles of community‐based participatory research that promotes social participation of older persons living in a residential community. Two pertinent challenges surface in the research process. The first challenge involves the complexity noted in the gap between the emancipation of community‐based participatory research and the hierarchical social structure of the society. The second challenge is the prevalence of unspoken yet subtle domination that undermines the local cultural values affecting the process of coconstructing knowledge with the community. Recommendations for addressing these challenges include future partnerships with other Malaysian communities as well as cross‐border research partnerships.     

Indigenizing CBPR: Evaluation of a Community-Based and Participatory Research Process Implementation of the Elluam Tungiinun (Towards Wellness) Program in Alaska

The process that community based participatory research (CBPR) implementation takes in indigenous community contexts has serious implications for health intervention outcomes and sustainability. An evaluation of the Elluam Tungiinun (Towards Wellness) Project aimed to explore the experience of a Yup'ik Alaska Native community engaged within a CBPR process and describe the effects of CBPR process implementation from an indigenous community member perspective. CBPR is acknowledged as an effective strategy for engaging American Indian and Alaska Native communities in research process, but we still know very little about the experience from a local, community member perspective. What are the perceived outcomes of participation in CBPR from a local, community member perspective? Qualitative methods were used to elicit community member perspectives of participation in a CBPR process engaged with one Yup'ik community in southwest Alaska. Results focus on community member perceptions of CBPR implementation, involvement in the process and partnership, ownership of the project with outcomes observed and perceived at the community, family and individual levels, and challenges. A discussion of findings demonstrates how ownership of the intervention arose from a translational and indigenizing process initiated by the community that was supported and enhanced through the implementation of CBPR. Community member perspectives of their participation in the research reveal important process points that stand to contribute meaningfully to implementation science for interventions developed by and for indigenous and other minority and culturally diverse peoples.     

Development of a Biomedical Program of Research in the Blackfeet Community: Challenges and Rewards

American Indian (AI) communities have high levels of stress and trauma and are disproportionately affected by numerous preventable diseases. Here, we describe an academic–community partnership based on a collaboration between Blackfeet Community College students and faculty in Psychology and Immunology at Montana State University (MSU). The collaboration, which has spanned over 5 years, was sparked by community interest in the relationship between stress and disease on the Blackfeet reservation. Specifically, community members wanted to understand how the experience of psychological stress and trauma may affect disease risk in their community and identify factors that promote resilience. In doing so, they hoped to identify pathways through which health could be improved for individual community members. Here, we discuss all stages of the collaborative process, including development of measures and methods and themes of research projects, challenges for community members and non‐indigenous collaborators, future directions for research, and the lessons learned. Finally, we note the ways in which this partnership and experience has advanced the science of community engagement in tribal communities, with the hope that our experiences will positively affect future collaborations between indigenous community members and non‐indigenous scientists.     

Using Participatory System Dynamics Modeling to Examine the Local HIV Test and Treatment Care Continuum in Order to Reduce Community Viral Load

Achieving community‐level goals to eliminate the HIV epidemic requires coordinated efforts through community consortia with a common purpose to examine and critique their own HIV testing and treatment (T&T) care system and build effective tools to guide their efforts to improve it. Participatory system dynamics (SD) modeling offers conceptual, methodological, and analytical tools to engage diverse stakeholders in systems conceptualization and visual mapping of dynamics that undermine community‐level health outcomes and identify those that can be leveraged for systems improvement. We recruited and engaged a 25‐member multi‐stakeholder Task Force, whose members provide or utilize HIV‐related services, to participate in SD modeling to examine and address problems of their local HIV T&T service system. Findings from the iterative model building sessions indicated Task Force members’ increasingly complex understanding of the local HIV care system and demonstrated their improved capacity to visualize and critique multiple models of the HIV T&T service system and identify areas of potential leverage. Findings also showed members’ enhanced communication and consensus in seeking deeper systems understanding and options for solutions. We discuss implications of using these visual SD models for subsequent simulation modeling of the T&T system and for other community applications to improve system effectiveness.     

社区背景下的心理赋权研究:回顾与展望

心理赋权作为社区心理学的一个核心概念,关注的是在特定社区背景下,以公民参与为目标的个体人格定向与自我调控过程。目前对心理赋权的理论研究已有一定积累,但实证研究还相当薄弱,无论是测量工具的开发、有关影响因素的探讨还是心理赋权的干预研究或行动研究,都亟需加强。本文着重介绍了心理赋权在理论研究方面所取得的成果以及实证研究的最新进展,并对未来的研究趋势进行了展望。     

Toward a Critical Community Psychological Perspective on Unemployment and Mental Health Research

Psychological research has established that unemployment causes widespread psychological distress and ill health in communities but, arguably, little of this research is truly community psychological. In this paper we sketch out a critical community psychological perspective and use it to contribute to understanding of the role of psychosocial aspects of income in the experience and mental health of employed and unemployed members of low-income families in a severely deprived community context; to the development of innovative participatory methodology, and to promote the interests of impoverished unemployed people through the research process as well as through the research outcome.     

Ritual Participation,Sense of Community,and Social Well-Being: A Study of <Emphasis Type="Italic">Seva</Emphasis> in the Sikh Community

The study examined the impact of frequency of ritual participation on sense of community and social well-being of a minority community in India, the Sikhs. We looked at a unique ritualistic practice of the Sikhs, seva. Rituals are known to contribute toward social solidarity and cohesion as well as physical and mental well-being. In particular for a minority community, rituals help group members establish and maintain strong community networks and a unique group identity. A total of 156 members of the Sikh community (85 males; 71 females) participated in the study. Frequency of ritual participation was positively related with social well-being and sense of community. Furthermore, sense of community was found to mediate the effect of frequency of ritual participation on social well-being. Results are discussed in the light of the importance of studying rituals in minority groups, the frequency of participation in a ritual activity and the importance of addressing social well-being in ritual research.     

The impact of internalized homophobia on HIV preventive interventions

A growing body of research implicates internalized homophobia—the internalization of society's antihomosexual sentiments by gay and lesbian people—as a factor contributing to HIV-related sexual risk behavior in gay and bisexual men. Although accumulating evidence links internalized homophobia and sexual risk behavior, no study has explored the impact of internalized homophobia on efforts to prevent these behaviors. This paper examines the effect of internalized homophobia on gay and bisexual men's awareness of, participation in, and perceptions of programs offered by a community-based HIV prevention organization. In Study 1, 595 gay and bisexual men reported their levels of awareness of and participation in HIV prevention programming offered by one community organization. Internalized homophobia was negatively related to men's awareness of the services offered by the organization. However, among the men who were aware of at least one service, internalized homophobia did not further predict service utilization. Study 2 examined 89 gay and bisexual men who participated for a single session in a group-structured, community-based HIV preventive intervention. Pre- to immediate postintervention change in perceptions of condom use self-efficacy was inversely related to internalized homophobia. Internalized homophobia was also a significant negative predictor of the extent to which participants felt similar to and related well with other members of the group. Together, these findings suggest that internalized homophobia may pose multiple barriers to community-based HIV prevention efforts.     

“It's the Day-to-Day Living That Matters”: The Meaning and Process of Community in the Lives of a Couple with Significant Psychiatric Disabilities

This study attempts to define and describe the experience and process of community and community participation using a qualitative case study of a couple labeled with significant psychiatric disabilities. Findings indicate that important influences on perceptions and the process of community belonging include (a) the opportunity to personally define the meaning, limitations, and level of care associated with receiving a psychiatric label; (b) a reciprocal, central relationship; and (c) recognized opportunities for intentional participation in and access to meaningful relationships with other community members, including in the role of coworker or colleague.     

How the Powerful Decide: Access to Research Participation by those at the Margins

How do those in power decide to include and exclude those at the margins from community life? We used simulated review of research vignettes to examine how researchers and members of Institutional Review Boards make decisions concerning the research participation of adults with and without intellectual disabilities. Results indicate that decision‐makers are influenced by the disability status of the sample, characteristics of the research in which they are engaged, and their attitudes toward the research participation of adults with intellectual disabilities as well as their own relationship to the research process. For example, decision‐makers may create situations that limit the self‐determination of adults with intellectual disabilities and adults without disabilities within the research context, particularly when the research poses some risk of harm to participants. Implications for theory, action and research are explored.     

Teaching Tradition: Diverse Perspectives on the Pilot Urban American Indian Traditional Spirituality Program

Many urban American Indian community members lack access to knowledgeable participation in indigenous spiritual practices. And yet, these sacred traditional activities remain vitally important to their reservation‐based kin. In response, our research team partnered with an urban American Indian health center in Detroit for purposes of developing a structured program to facilitate more ready access to participation in indigenous spiritual knowledge and practices centered on the sweat lodge ceremony. Following years of preparation and consultation, we implemented a pilot version of the Urban American Indian Traditional Spirituality Program in the spring of 2016 for 10 urban AI community participants. Drawing on six first‐person accounts about this program, we reflect on its success as a function of participant meaningfulness, staff support, mitigated sensitivities, and program structure. We believe that these observations will enable other community psychologists to undertake similar program development in service to innovative and beneficial impacts on behalf of their community partners.     

The increasing relevance of European rural young people in policy agendas: Contributions from community psychology

Our paper aims to provide a short guide on how community psychologists can contribute to the improvement of rural young people's prospects. After briefly introducing the demographic trends of these young people in continental Europe for the past decade, we list the current challenges faced by rural European young generations, as well as the opportunities emerging for them from the twin transition that can inspire the community psychology field. We then contextualize community psychologists' interventions in this domain according to an ecological-systemic standpoint and by embracing a Participatory Action Research (PAR) perspective on research and practice. We further detail the reasons for adopting a PAR approach in research and practice to address rural young people's challenges and opportunities. Finally, we highlight four potential intermediation missions to uphold community psychologists' rural youth development input, based on the adopted theoretical and methodological standpoint. We conclude that our short guide can facilitate community psychology professionals' complete understanding of rural young generations' prospects, in line with the expected increase in the need for rural young people's participation. Our proposal may also have long-term benefits for rural communities by contributing to the redesigning of intergenerational relationships and securing critical mass.     

Action Research on Meaning-Making at Residents' Meetings for Local Disability Policy1

This is the third in a series on residents' meetings (RMs) for municipal disability policymaking in Japan; members included people with disabilities (PWDs). I focused on members' meaning-making process for three community organizational goals: task, process, and relationship. Action research was employed in all three studies during my participation in RMs, which began in 2002. The present study is a follow-up on the meetings' development and covers 2013 to 2019. Meetings were divided into three phases: (a) use of the annual symposium to inform a broader audience about disability policies; (b) appreciation that PWDs can play active roles as supporters of others, especially other PWDs; and (c) recognition that contradiction and dilemma are present in attempts to provide “universal” social equipment for social minorities. The three goals were interrelated through uncertainty and vagueness of RMs; however, it enabled the members to interpret their multifaceted disability-related experiences. PWDs realized their power to help others and developed disability identities through intensive discussions, while they realized the difficulty of social acceptance of their power and the limited solidarity among PWDs.