community-based participatory research

Community Based Participatory Research (CBPR) represents an integrated set of principles and values in which those being studied (the community) plays a central role in determining the research agenda and actively engages in all phases of the research project including the definition of the research questions and development of the proposal (Hall, 2001; Wallerstein & Duran, 2003; Wright, Roche, Von Unger, Block, & Gardener, 2009). Participatory research such as CBPR consists of three inter- related goals which drives the research process; research, education and action (Burgess & Purkis, 2010). These goals also serve as evaluation criteria for assessing the quality and integrity of the study (Reason & Bradbury, 2001). The research goal is accomplished collection and analysis of data while the education goal is addressed through information sharing and collective reflection (Bradbury and Reason, 2003). This process of education and reflection helps people to develop a better understanding about how their current situations have come to be (Kemmis & McTaggart, 2005). This increased awareness and a sense of appreciation for the history and contextual factors of the people under study leads to a desire for change as people begin to question their circumstances and to come to a consensus on strategies for creating change (Wallerstein & Duran, 2003). This desire for change leads to the social “action” goal or component of the CBPR approach as study participants, also referred to as co- researchers collaborate with other researchers and community members to engage in a collective social action to change their situation.

Community-Based Participatory Research in public health is a partnership approach to research that equitably involves community members, organizational representatives, and researchers in all aspects of the research process.26 In CBPR, all partners contribute their expertise and share responsibilities and ownership of projects designed to enhance understanding of a given phenomenon as well as integrate the knowledge gained with action to improve the health and well-being of community members.26

a questionnaire exploring older people’s use and perceptions of community services. The authors discuss both older adults’ and the researchers’ views of the participatory process. The key lessons and challenges that emerged from the research are analyzed using the nine principles of community-based participatory research outlined by Israel et al. The authors question whether older people in all instances seek extensive involvement in all aspects of participatory projects and raise a number of questions that require further analysis before a robust and viable understanding of participatory research that safeguards against the tokenistic involvement of older people can be developed.

C itizenship is a concept often understood in terms of the duties, rights, obligations and functions a person has as a member of society. In mental health policy and practice, however, the term has broader reach. People with lived experience of mental health problems (MHPs), an often marginalised and excluded population, face obstacles to gaining the full range of opportunities that are typically available to the population in general. Citizenship, as a framework for supporting the social inclusion and participation in society of people with experience of MHPs, is receiving increased attention internationally in academia, policy and health and social care practice. Community Based Participatory Research (CBPR) principles were used to develop a conceptual framework of citizenship for people experiencing MHPs and/or other life disrupting events in Scotland. The use of CBPR replicated an approach adopted as part of an international collaboration in understanding citizenship across diverse social and cultural contexts.CBPR comprises of a range of approaches and techniques which aim to transfer the ‘power’ from the researcher to the participants. Participants have control over the research agenda, its process

trafficking initiatives adopt a victim-centred approach that focus on prevention, but do not adequately address the aspirations of trafficking survivors upon reintegration into families, communities, and society (Buet, Bashford, & Basnyat, 2012; Chaulagai, 2009; Chen & Marcovici, 2003; Dhungel, 2017c, 2017d; Frederick, 2005; Hennink & Simkhada, 2004; Sharma, 2014). For example, some reintegration programs including counselling, basic medical care services, educational and vocational training and preventing stigmatisation are more victim-centred, and seem to be pre-designed and generalised under a “one size fits all model” (Adhikari, 2011; Bohl, 2010; Chaulagai, 2009; Dhungel, 2017d; Sharma, 2014). Those who want some level of professional training, including health care and hotel management, as opposed to vocational training, such as sewing and knitting, are not provided with these enhanced opportunities, which can limit their economic opportunities and independence. Given the above limitations and challenges, the community-based participatory research project was initiated to not only provide survivors with an opportunity to understand their intersectional oppression but also to promote personal and social transformation, including agency, connectivity and hope.

Central to this paradigm is the concept of social capital which is broadly viewed as those features of social organization external to the individual such as mutual trust, respect, and reciprocity, as well as secondary civic and political organizations, which foster and facilitate collective action among community members to address social issues and health problems at the neighborhood, community, and societal levels ( 3 ). These insights have emerged in parallel with a resurgent interest in a partnership approach to research and the practice of public health involving the communities we are interested in studying. Community-based participatory research (CBPR), which focuses on physical as well as social environmental inequities through active involvement of community members, organizational representatives, civic institutions, neighborhood health centers, and researchers at all stages of both research and intervention processes, offers an invaluable tool for community empowerment which may have longstanding impact on building social capital, influencing policy and, in turn, impacting public health ( 4 , 5 ). This section will examine more in-depth the concept of social capital, describe a particular CBPR project that addresses social capital, and summarizes the discussions from the social capital breakout session.

Starting with successful models of other academic-public collaborations [5,8]. and modifying them to the specific needs of the partners and the population, UCSD and San Diego County created a partnership focused on older adults with psychosis. The organizing rationale for this center was to establish an evidence-based partnership approach that adopted the principles of community- based participatory research in order to facilitate imple- mentation of evidence-based approaches to assessment and intervention. The cultural exchange between two organizations that differed vastly in values orientations, bureaucracy, and function required a substantial invest- ment of time, a strong commitment to the process, an openness to change, flexibility in the face of shifting con- texts and priorities, and willingness to compromise and accommodate. The partnership received the endorsement of the top leadership in both organizations, an important factor in promoting cohesiveness and cooperation.

1- Bahreini F, Forouzan AS, Jamshidy A, et al. Community Based Participatory research. Tehran: deputy of Research & Technology; 2005. [In Persian] 2- Israel B, Schul AJ, Parker EA , Becker AB. community based participatory research: Engaging communities as partners in health research, community – campus partnership for health discussion, 4 th annual conference. Washington dc; 2000.

Schulz AJ, Zenk SN, Kannan S, Israel BA, Koch MA, Stokes CA. 2005. CBPR Approach to Survey Design and Implementation: The Healthy Environments Partnership Survey. In: Israel B, Eng G, Schulz A, Parker E, eds. Methods in Community Based Participatory Research for Health, San Francisco, CA: Jossey-Bass Publishers; 2005;107-127.

Abstract The Community-based Participatory Research (CBPR) has been well defined and widely applied to different study populations in a variety of health topic areas to address the urgency of translating research into practice, reducing health disparities, improving health equity, and advocating for health policy changes. The current study aims to systematically examine how CBPR has been applied to improving underserved refugee populations’ health and identify the successes and challenges of CBPR utilization among refugees. A total of 930 peer-reviewed journal articles, reports, commentaries, theses, dissertations, books, and book chapters in English, retrieved from several major databases (e.g., EBSCO, ERIC, PubMed, PsycINFO, CINAHL Plus, and Google Scholar) were initially reviewed. Fourteen peer-reviewed journal articles were finally selected and analyzed using the theme analysis. Results showed that successes of utilization CBPR in refugee health studies were achieved in areas of shared learning, trust, recruitment, methodological rigor, advocacy, sociocultural determinants, dissemination/ sustainability, ethics, cultural competency, and stigma. However, the CBPR practice was also challenged by issues emerging from institutional culture and structure, clinical procedures, non-probability sampling, self-reflection, and repetition. Current literature suggests that overcoming these challenges requires both institutional restructure and policy changes, and changes in the focus of both internal and external funding mechanisms.

The design and reporting of this project was informed by the principles of Community Based Participatory Research (CBPR) defined as “systematic inquiry, with the collaboration of those affected by the issue being stud- ied, for purpose of taking action or effecting change” [15]. The CBPR approach recognises consumers, family members and practitioners as producers of knowledge and not just research project participants [16]. CBPR utilises innovative methods to resolve a problem and recognises the importance of stakeholders’ capacity to analyze knowledge while articulating their own needs [15]. In the present study, this co-learning process was framed within a mutual exchange of expertise amongst those that live with mental illness, family members, those who work in the field and the project team who facilitated the process. A key strength was the integra- tion of researchers’ theoretical and methodological expertise with non-academic participants’ experience and knowledge, to respond to issues in a comprehensive and coordinated manner.

Policy makers, funders, and community leaders are frustrated with the inability to apply research findings to health problems facing communities. Community- based participatory research is recognized as a viable process of conducting research that is meaningful to both academia and community, reduces community member distrust and expands academic knowledge of application beyond bedside and clinic to a much broader and more complex setting. To bring CBPR into the mainstream of academic culture, academic institutions must expand their vision to include the community and multiple forms of scholarship, and they must take practical steps to include CBPR. Individual researchers will need to make major personal efforts, supported by their academic institutions, to venture into a new and exciting world known as community based participatory research.

Primarily for these reasons, there is little published evidence-based research that captures the intricacies of the processes involved in promoting initiatives to enhance Aboriginal health and wellbeing. To address the persistent gap in the literature, the purpose of this paper is to consider the innovation arising from the application and utility of community-based participatory research in Aboriginal Australian contexts. The aim of the paper is to present a model of community-based participatory research that works, and has been sustained for over a decade. It showcases an Empowerment Research Program (ERP) from Australia by highlighting the importance of strengths-based participatory approaches for working with Aboriginal people as partners in community development projects. It emphasises how social science research and researchers’ expertise can be relevant to Aboriginal community priorities, people’s daily lives, needs and aspirations by developing research models that build up authentic partnerships; are context-dependent; strengthen local capacity through research; and are based around mutually identified situational ethics (Bainbridge, McCalman & Whiteside, in press; Tsey, 2010). We will provide the context in which the research program has flourished; an overview of the program and its research outcomes; examples of community-level empowerment and the psychosocial processes involved in becoming empowered for Aboriginal women; and provide current empirical examples of our research. The ground question being considered in this paper is: How can social science researchers most effectively move from theory to practice to support improved health and wellbeing for Aboriginal people?

within GA. In addition, the extreme variability in kidney transplantation across dialysis facilities suggested the need for traditional quality improvement methods for low per- forming dialysis facilities, including facility protocols to en- sure best practices for kidney transplant referral. Dialysis facility surveys showed that targeted education among dia- lysis facility staff was needed, based on staff survey results showing that a third of providers felt they did not have suf- ficient patient educational resources and did not have suffi- cient training about transplantation. Focus group analyses suggested that patients had limited knowledge about the kidney transplant process and few educational resources or tools to help clarify misinformation or lacking information. The results of this needs assessment, combined with practical aspects such as sustainability and feasibility, helped the SEKTC members develop a multicomponent, quality improvement intervention to deliver among dialy- sis facilities in order to reduce racial disparities in access to kidney transplantation. The purpose of this paper is to de- scribe the community-based participatory research (CBPR) process used to design the protocol for the RaDIANT Community Study. The strategy and methods the SEKTC used to develop a large-scale, evidence-based, quality im- provement intervention could serve as a model for other academic or community partnerships in developing and implementing interventions on the ESRD Network level.

The formation of this community-academic partnership allows us to develop appropriate research methodology in accordance with the local Chinese cultural context, in which a community advisory board (CAB) plays a pivotal role in providing insights and strategies for conducting research. The board is composed of community leaders and stakeholders from a variety of organizations who have frequent interactions with the aging population and a broad range of expertise in community fairs. A series of CAB meetings were held at the community centers to guide and oversee the workshop preparations. CAB members worked extensively with the investigative team to identify health needs, review workshop topics, examine presentation preparations,evaluate instruments and session presentations with the goal of ensuring cultural sensitivity and appropriateness. Given the inherent diversity of Chinese communities, workshop materials were carefully designed and developed according to cultural and linguistic complexities. Questionnaires were prepared in English, traditional Chinese and simplified Chinese in order to accommodate community residents. Speakers were invited to first tour the community centers and gain insights on the history and cultural heritage of the Chinese community before delivering the session. Due to the synergistic partnership with the local community service agency, participants were invited from different social groups and senior apartments.

• At UT Southwestern Medical Center (UTSW), the increasing number of students volunteering at an expanding number of free clinics has created the need of enhancing communication, coord[r]

A sample size of 100 men and women was pre- determined for each assessment site. Quota sampling was applied and on each survey day the estimated age and gen- der distribution of the site was used to determine the number of male and female respondents needed in each of the following two age strata: 18–35 years and >35 years. If the intended respondent (i.e. older man) was un- available at the first household, the interviewers were asked to proceed to the next household, according to the pre-determined interval, until they found a respond- ent who met the designated criteria. Only one individual was interviewed per household. Upon selection of the respondent at the household, the survey was introduced and verbal informed consent was obtained. The respon- dents were informed that they would not receive com- pensation for their responses and that their participation was voluntary. The assessment was intended to survey adults 18 years of age or older; however, in several sites, the community steering committee wanted to under- stand the experiences of those under age 18. For respon- dents aged 12–18 years, verbal consent was obtained from an adult household member and verbal assent was obtained from the minor.

Results: Four interviews and a focus group of 12 key informants were conducted and a mountain hamlet with a history of TB was visited. The results represent the data from the interviews and the focus group. The time delay in presenting to the Hospital from when participants first became unwell ranged between two and three years. In the mountain hamlet, two additional people with probable TB were seen who had not presented to the Hospital during illnesses of five and nine months. Reasons for delays included: seeking care from traditional healers; the challenge of accessing health services due to distance, cost and cultural issues different from the Hospital’s worldview; social isolation when in hospital; and being old so not having long to live. Delays in diagnosis of people with TB will increase the risk of transmission to family and through hamlets and villages. This study has led to plans being developed to build a more culturally appropriate TB ward and community treatment program.

Community members proficient in Te reo provided Māori translation of all YouthCHAT questions, which were then back-translated for validation and pro- grammed in. A YouthCHAT user manual was developed in conjunction with practice staff with local community agencies and resources added. Information technology systems were field-tested, and data collection ran from November 2015 to January 2016. YouthCHAT questions were delivered to youth on an e-tablet. Screening results and scores were available immediately through secure transferral to the clinic’s electronic medical record (EMR) via a secure server. Clinic staff reviewed Youth- CHAT results to identify youth in need of immediate help (e.g. triggered a self-harm alert) and/or who had scored positively for issues measured by YouthCHAT (e.g. substance abuse) and who wanted help.

offer unique strengths for approaching the equity challenges of farm labour regimes. Projects invol- ving academics who have the time, resources, and skills to conduct research, working in collaboration with organizational actors with grounded experi- ence and established relationships, offer a powerful opportunity to affect attitudes, programs, and policies. In this study, however, a notable limitation in terms of transformative potential has been the lack of involvement of migrant farmworkers themselves. We contend that in order to mean- ingfully reverse the conditions that make farm- workers disproportionately vulnerable to social and economic inequalities and poor health, farmwork- ers must have the opportunity to participate in authoring such changes. At present, migrant farm- worker deportability and job precariousness make participation tremendously difficult. Diverse coalitions committed to advancing justice and eco- nomic viability in the food system, however, can help to create political spaces for farmworkers to participate in decisions affecting their lives. As part of this ongoing project, we intend to create addi- tional spaces for farmworker participation in identifying priorities and taking collaborative action to advance their goals. Ensuring conditions of equity and dignity for farmworkers will help to create a food system that better enables everyone to thrive.