Abstract
In physical therapy, there is increasing focus on the need at the community level to promote health, eliminate disparities in health status, and ameliorate risk factors among underserved minorities. Community-based participatory research (CBPR) is the most promising paradigm for pursuing these goals. Community-based participatory research stresses equitable partnering of the community and investigators in light of local social, structural, and cultural elements. Throughout the research process, the CBPR model emphasizes coalition and team building that joins partners with diverse skills/expertise, knowledge, and sensitivities. This article presents core concepts and principles of CBPR and the rationale for its application in the management of health issues at the community level. Community-based participatory research is now commonly used to address public health issues. A literature review identified limited reports of its use in physical therapy research and services. A published study is used to illustrate features of CBPR for physical therapy. The purpose of this article is to promote an understanding of how physical therapists could use CBPR as a promising way to advance the profession's goals of community health and elimination of health care disparities, and social responsibility. Funding opportunities for the support of CBPR are noted.
Increasing recognition of widespread racial or ethnic health disparities is motivating a renewed focus on health promotion at the community level.1–5 These efforts integrate medical and social models of health care to maximize the potential of people with disabilities, the need for stronger evidence for practice, and community-based approaches. Examples are community-based rehabilitation addressing equality of opportunity within community development and social integration of all people with disabilities through combined efforts of people with disabilities, their families and communities, and appropriate health, educational, vocational, and social services.5,6
Furthermore, the 2013 vision adopted by the American Physical Therapy Association describes how physical therapy should influence people, communities, and populations, including: “transforming society by optimizing movement to improve the human experience.”7 The vision links physical movement to health and wellness, health equity, and quality of life. In sum, physical therapists are: (1) invited to look beyond clinical environments to optimize movement through activities such as service learning and pro bono clinics in which many physical therapists are engaged8,9 and (2) encouraged to collaborate with other health care professionals, community organizations, and people with health issues to solve local health challenges.
To achieve this vision regarding health disparities (a health equity component), we suggest that the profession of physical therapy should embrace community-based participatory research (CBPR) as a promising method for promoting community health and enhancing access to, use of, and outcomes from physical therapist services.10 Community-based participatory research is a “collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities.”11
The rationale for using CBPR includes the incorporation of existing research methods, collaborative partnering of community members and researchers, building of trust, and sharing of power throughout research design, conduct, process evaluation, and outcome dissemination; all of these are intended to benefit the involved and affected communities.12,13 Community-based participatory research is related to the PRECEDE-PROCEED model,14 which guides trust building among stakeholders, including steps to understand and prioritize the multiple and complex factors associated with community health, and encourages collaboration to assess behavioral and environmental factors that influence health and quality of life and thereby guide the development of interventions and policies.
Another reason to use CBPR is the potential for all parties to learn through the mutual development of interventions to address community health issues. Also, findings of interventional and applied research may lead to changes in practice and governmental funding policies.12 Furthermore, CBPR incorporates social, structural, and cultural elements of equitable partnership and teamwork. These features build community capacities and oppose exploitation. Thus, CBPR is community placed and community based and is done with and for the community, which has equitable ownership of the research.15 In contrast, research simply conducted in community locations is fundamentally different from CBPR.16
Compared with standard approaches, CBPR shows more promise for improving community members' quality of life and the local validity of research findings and intervention programs because insider perspectives influence design.17,18 Such community inputs of local knowledge and priorities help promote locally meaningful outcomes.12 Community-based participatory research involves partners with diverse skills and expertise, knowledge, and sensitivities in addressing complex health problems. Mutually enhanced research capacities, including the ability to develop other successful proposals, may follow. Recognizing their importance, funding agencies now sponsor many CBPR projects.19–22
Community-based participatory research has been applied to many diseases, but our literature review revealed limited use of CBPR in community-physical therapy partnerships. However, a recent study by Healey et al,23 published as a “work in progress,” is a good case example for showing how CBPR complements clinical studies in addressing community health concerns. Drawing on this report, we review CBPR fundamentals, contrast CBPR with clinical investigations, summarize evidence for the effectiveness of CBPR, and describe implications for the advancement of physical therapist practice.
Case Example
Healey et al23 described a community-physical therapist partnership approach to improving the health of African American adults through enhanced physical activity in the Austin neighborhood on the west side of Chicago, where 90% of the residents were African American and 24% were below the poverty line. The community partners were a manager of the Community Healthy Lifestyles Project (who coauthored the article) and a long-term nurse consultant to Westside Health Authority, a durable promoter of community capacity.23 The academic partners were 2 faculty members from the Department of Physical Therapy and Human Movement Sciences at Northwestern University.
An article about addressing health disparities through a community-hospital partnership led an academic partner to promote coalition development.23,24 Mutual site visits, meetings, and group discussions including community health advocates and physical therapist students forged the collaboration. Key topics were nutrition, physical activity, and emotional well-being.23 Shared interests and goals led the community-physical therapist coalition to launch a project to develop an ongoing partnership to improve the health of Austin residents and to engage students in CBPR to expand their learning and development as future health care professionals.
Overview of CBPR
Traditional Biomedical/Clinical Research and CBPR
Academic researchers typically propose research questions and determine study objectives. In the sample case, the objective was to improve community health by promoting physical activity. In standard approaches, researchers would design the study protocol, implement programs, analyze the data, and disseminate findings to professional peers and possibly to research participants. Community members (here, African Americans) traditionally would be excluded throughout the study, from design to dissemination. Their advice and assistance about working with the community and culturally bridging to it commonly would be sought. Typical research may or may not improve local health and health care practice and build community capacity for addressing health problems.25 In contrast, CBPR aims to aid the community by collaboration of community and academic partners with equitable participation and decision making throughout the process.12
Fundamentals of CBPR
Community-based participatory research is increasingly being used to improve public health and eliminate health disparities, in part because adverse socioeconomic factors, such as poverty, substandard housing, unsafe environments, and inadequate opportunities for jobs and economic resources, affect health status.26,27 The CBPR model may be seen to align well with key dimensions of the International Classification of Functioning, Disability and Health model.28 The framework of the International Classification of Functioning, Disability and Health examines not only how an individual with a health condition functions in everyday life (part I) but also how contextual factors (environmental context and personal factors) can change the influence of a health condition on the functioning of the individual (part II).28,29 The CBPR model incorporates domains of both parts. Traditional research includes part I domains but typically overlooks the lived experience. In contrast, the CBPR approach of Healey et al23 addresses environmental barriers as well as family and social support regarding limitation and priority of physical activity.
The building of community capacity and equitable collaboration and control illustrate community empowerment in CBPR.12 Academic researchers and community representatives jointly plan a project and develop objectives in light of a mutually negotiated mission and equal decision-making powers that incorporate community assets, knowledge, priorities, and customs. Researchers bring scientific knowledge, investigation expertise, and evaluation methods. Both groups may analyze data and disseminate outcomes through publications, brochures, presentations, and routes for diverse audiences.30 Research findings can support policy advocacy and research translation into practice.31 Such active engagement of diverse communities in research can address many aspects of health disparities.3,31–33
Potential Barriers to the Success of CBPR
Many challenges oppose the aims of CBPR for true collaboration and partnership.34 An example is community distrust of researchers because of prior academic research that did not benefit participants, provided inadequate feedback, failed to bridge or understand cultural differences, insufficiently considered varied perspectives or beliefs, and inequitably distributed power, ownership, and funding.12,35,36 These sources of rational community distrust are barriers to successful CBPR and collaborative relationships.37,38 Building community trust generally requires sustained investigator presence in the community, open communication, incorporation of community members' knowledge and expertise in the CBPR process, and establishment of mutually clear expectations and intentions in the initial stage of the partnership. Relevant issues are resource allocation, partner roles and duties, and ultimate dissemination plans.
Barriers related to academic research may impede the development and merging of CBPR-based outcomes in the physical therapy profession. The current physical therapy paradigm primarily focuses on an individualized approach to the acquisition of evidence and service management. However, a transition to CBPR will require extra effort, time, and new skills, the latter including strategies for the dissemination of results to the community through nonacademic routes, such as newsletters or local media.23,25,39 Other barriers for physical therapist faculty members are institutional promotion and tenure policies that emphasize traditional scholarly productivity.
Partnership and Empowerment
Community-based participatory research for clinical studies or local enhancements that foster health is emerging from increased understanding and recognition that the community is a social, cultural, and economic entity and that active and equitable participation of community members throughout the process should occur.35 We stress the aims of mutual understanding and direct community benefits. In serving these objectives, the core CBPR principles (or action guides) enunciated by Israel et al13(pp7–9) were as follows:
Recognizes community as a unit of identity.
Builds on strengths and resources within the community.
Facilitates collaborative, equitable involvement of all partners in all phases of the research.
Integrates knowledge and action for mutual benefit of all partners.
Promotes a co-learning and empowering process that attends to social inequalities.
Involves a cyclical and iterative process, with continual involvement of community members.
Addresses health from both positive and ecological perspectives.
Disseminates findings and knowledge gained to all partners.
CBPR Approach
Project Planning
In accordance with the principles of CBPR, academic researchers and community representatives form a collaborative team, as did Healey et al in the Austin area of Chicago.23 Early planning may identify other potential core partners with key backgrounds or knowledge, attending to the inclusive aims of CBPR. Consequently, interdisciplinary collaboration will be a key feature of physical therapy–related CBPR, particularly when social, cultural, environmental, and public health issues are involved. To ensure full collaboration and knowledge sharing, community partners should help design recruitment strategies and identify useful community resources.40,41 For example, Healey et al23 included community health advocates who helped develop focus group questions and recruit local residents. The following steps will help ensure successful and equitable collaboration: early mutual agreement on guiding principles, such as open and regular communication, equal power in activity planning and decision making, ways in which to show mutual respect, and determination of a fair decision process. Building on published CBPR principles could be helpful.15,40
Determining Research Objectives and Study Design
In CBPR, parties collaboratively determine study objectives, as in the sample case of enhancing physical activity among Austin residents.23 The CBPR team reviewed information from focus groups and mutually designed goals for each project. Specifically, community health advocates and physical therapist students collaboratively created a training curriculum that promoted physical activity with structured exercises, ways to increase activity in everyday life, and strategies to overcome barriers. Such community inputs promote tailored CBPR interventions that are more likely than traditional methods to meet the needs of community members. Furthermore, the dynamic iterative CBPR model allows partners to incorporate other community priorities as the study proceeds.
To address community needs and priorities effectively, partners may need education about community culture, history, and skills as well as research fundamentals. Partners then may need significant time to mutually develop good research designs. Consider the challenge of implementing and sustaining physically active lifestyles. People must become self-disciplined and possibly retrained. Thus, major sharing of knowledge may be required to identify the most promising and realistic strategies.40 To this end, special efforts may be needed to promote openness, understanding, patience, problem solving, and respectful collaboration.40–42 Process and conflict resolution strategies are crucial. An example is regular partner meetings to monitor progress and address challenges.40
Partners may distribute responsibilities and inputs. For example, community partners typically help generate hypotheses and customized intervention programs from their insiders' perspectives and priorities.25 Although academic partners usually are significantly involved in or lead in the design of interventions, inputs from community partners ensure that local knowledge and the lived experience of community members are incorporated.23,40,41 Community members may have primary responsibility for recruitment and retention.
Methodologically, mixed quantitative (eg, assessment of physical and functional outcomes) and qualitative (eg, focus group, interview, and open-ended survey questionnaire) methods generally are best. For example, the coalition of Healey et al23 used data from focus groups, a survey questionnaire, and outcome measures, such as the 6-Minute Walk Test. Focus group information enhanced all partners' understanding of community members' attitudes toward physical activity and potential influences of family and social support on physical activity in their lives.
Data Analyses and Dissemination of Findings
Community-based participatory research data are equitably owned by all partner groups unless they fairly negotiate an alternative plan. The parties share responsibility for data analysis after mutual agreement on how to do it. Data analyses and interpretation ideally are frequent so that needed design modifications can be promptly implemented. Academic partners may conduct data analyses while all partners interpret the results and recommend the next steps. Of course, some interpretation efforts may require specific technical expertise that usually resides with academic investigators. When data interpretation requires expert input, we recommend a subsequent translation to all partners to enable the discussion of implications for the study and the community.
Partners in CBPR should collaboratively decide how to disseminate the findings, guided by the core commitment to the health of local community members.43 For example, authorship decisions should be equitably negotiated among the partners. Community media platforms may include newsletters, local newspapers, TV stations, the Internet, and town hall meetings.25 Healey et al23 reported the wide distribution of 400 physical activity newsletters at various locations in Austin.
Clinical Implications of CBPR
The thorough community engagement of CBPR can enhance the translation of clinical research findings into local health policy.44 The method's attunement to community priorities and local knowledge facilitates the development and implementation of effective community-based health promotions and interventions. Community members may gain increased understanding of disease processes, risk factors, and self-management that can promote further successful efforts. Trust and collaboration enhanced by CBPR can help advance the aims of funding organizations, including cost-effectiveness.45
Eliminating Racial and Ethnic Health Disparities
We noted that in the 2013 vision of the physical therapy profession adopted by the American Physical Therapy Association, an underlying principle addresses the profession's obligation to recognize and ameliorate inequitable health and health care access.7 Reducing racial and ethnic health disparities relates to patient care in physical therapist practice.46 In current evidence-based physical therapist practice, typical clinical studies produce evidence through traditional research models, such as randomized controlled trials and systematic reviews.47 However, without the voices and perspectives of community members, outcomes may lack meaningful local relevance for addressing health disparities.
The American Physical Therapy Association developed strategies to identify existing racial and ethnic disparities in access to and use of outcomes from physical therapist services and developed guidelines for data collection.10 Community-based participatory research can serve as a powerful tool for gathering data and developing effective interventions for the involved communities.48
Advancing CBPR in Practice
The CBPR approach is especially applicable to racial, ethnic, and other communities that are historically underserved or disadvantaged. “Communities” also can include people sharing a medical condition, such as diabetes, Parkinson disease, and spinal cord injury (SCI), and people who are healthy and trying to adopt lifestyle modification programs.40,41,49,50 For example, the CBPR approach can involve collaborative research to develop, implement, and assess physical activity and exercise training for people with Parkinson disease, their caregivers, Parkinson disease associations, and health care providers.50–52 The authors of the cited studies argued that input from patients with Parkinson disease is crucial for effectively implementing exercise interventions and increasing physical activity. Furthermore, they suggested that a logical next step for neurorehabilitation would be to use CBPR to help health care professionals serve both patients and their caregivers.
Illustrating the potential of CBPR, Kitzman and Hunter49 reported a community-academic partnership of people living with SCI, community members, service providers, and SCI researchers. Through a rehabilitation network created to improve health outcomes and quality of life for people with SCI in rural communities, the collaboration produced many benefits and used extensive community assets. Reliance on multiple entities enhanced the feasibility of the long-term sustainability of the network. For both people with SCI and those who lived and worked with them, the conclusions were that a sense of having a voice, being heard, and building interpersonal connections decreased feelings of isolation and neglect.49
In another example, a healthy heart intervention program involving CBPR effectively enhanced levels of physical activity in women.41 The authors attributed the success of the intervention to trained volunteers' recruitment of community members through social networks and program partners' role in interpreting study findings. In sum, the study findings supported the use of CBPR as a feasible and effective health care delivery strategy for community health promotion.41
Community-based rehabilitation is a strategy for rehabilitation, equalization of opportunities, and social integration of all people with disabilities within the community, but it also can promote fulfillment of the rights of people with disabilities to live as equal citizens, enjoy health and well-being, and participate fully in educational, social, cultural, religious, economic, and political activities.6,53 However, limited progress has ensued over the past 30 years, especially for women with disabilities, people with severe and multiple disabilities, and people who have disabilities and are poor.6
Community-based participatory research may help solve these problems because it is more likely than traditional studies to generate specific evidence that supports delivering, adopting, and sustaining community-based rehabilitation programs. A core reason is that CBPR incorporates inputs and participation from people who live with a disability as part of the research team. Thus, the outcomes of CBPR are more readily visible and transferable to the target population.
Evidence for CBPR Effectiveness
We have suggested that to achieve its aims, the physical therapy profession should significantly increase its use of CBPR. However, what is the evidence that CBPR is equal or superior to standard scientific methods? For all of the appeal of promoting justice and respect, including local knowledge and community priorities, building community capacity, and fostering collaborative partnership, CBPR ultimately should benefit the involved communities and conclusions should meet the best evidence standards. Although completely addressing these concerns would require a detailed account beyond the scope of this article, a brief discussion follows.
For contrast, consider a “community-placed” study of influence on balance-related psychological factors in a larger fall prevention program that addressed balance performance at community sites.54 Representatives of community organizations helped recruit older adult participants. The study design was quasi-experimental, with a control group and nonrandom assignment of participants and community organizations to minimize the influence of an artificial situation. The authors noted that assessing “the program's effectiveness under real-world conditions”54(p1949) is “required to allow a true transfer of research knowledge into public health practice.”54(p1955)
The intervention used in the community-placed study of Filiatrault et al54 was in and for the community but not with the community.55 Differences from CBPR were as follows:
Community members did not determine or participate in designing, conducting, assessing, or disseminating the study.
Community capacity building or empowerment might have ensued but was neither an aim nor assessed.
The study reportedly was successful without either of the previously listed features.
Contrasting CBPR with the method of Filiatrault et al54 highlights the initial evidential standards for evaluating the effectiveness of CBPR. We explained that the overarching aims of CBPR include equitable and collaborative community-investigator involvement throughout the process and community capacity building and empowerment, among others. Thus, the effectiveness of CBPR must address this complex set of outcomes. Harrop et al56 identified 12 features of CBPR success that relate to such aims of CBPR. Examples are “trusting relationships,” “equitable processes and procedures,” “diverse membership,” “tangible benefits to all partners,” “collaborative dissemination,” and sustainable impact.56(pS160)
Further clarifying the challenges of CBPR evaluation, Jagosh et al wrote, “The main challenge in evaluating PR [participatory research] is that it is, by nature, a research approach that can be applied to an array of interventions encompassing a multitude of research paradigms, methodologies, and methods. This requires distinguishing analytically between the benefits of co-governance for research processes and the benefits of the research program itself (ie, the research's health change goals).”57(p313) For “participatory research,” these authors used criteria central to CBPR.
Fortunately, Jagosh et al examined 23 partnerships culled “from 7,167 abstracts and 591 full-text papers.”57(p312) In summary, they found that “PR generates culturally and logistically appropriate research characteristics related to:
Shaping the scope and direction of research.
Developing program and research protocols.
Implementing program and research protocols.
Interpreting and disseminating research findings.”57(p320)
Other findings57(p320) were that “PR generates capacity to recruit,” “PR generates the capacity of the community partners [and] the research partners,” “PR generates disagreements between the co-governing stakeholders during decision-making processes, resulting in both positive outcomes for subsequent programming [and] negative outcomes for subsequent programming,” synergy builds that enhances “the quality of outputs and outcomes over time” builds, and “PR generates systemic changes and new unanticipated projects and activity.”
Finally, we do agree that the evidence base for CBPR needs further strengthening, but supporting data continue accumulating. Some aspects of the scientific evidence for the effectiveness of CBPR are unresolved. Buchanan et al wrote, “To assess the ‘CBPR effect,’ the ideal research design would be a group-randomized trial that compared communities randomized to the CBPR process to communities assigned to the comparison condition of a traditional researcher-driven investigation. Such an investigation, however, would be tremendously complicated and practically impossible.”58(p157) To our knowledge, this ideal has not been reached. However, this ideal is deficient because CBPR has the overarching aims of justice, respect, and use of local knowledge. In addition, “traditional research-driven investigation” does not intentionally build community capacity.
Conclusion
Evidence suggests that CBPR is a powerful approach for promoting the physical therapy profession's new vision and addressing health needs and disparities at the community level. This article suggests the benefits of CBPR and how it could be more extensively used. The principles and aims of CBPR fit the “outward perspective,” a significant element of the new vision, and the core value of social responsibility.7 Furthermore, federal agencies are providing increased funding opportunities for CBPR.20–22 We envision a more proactive role of physical therapists in generating CBPR evidence during the journey of achieving the aspirational principles of the new vision, ultimately transforming society by optimizing the movement to improve the experiences of people, communities, and populations.
Footnotes
All authors provided concept/idea/project design and writing. Dr Xia and Dr Stone provided project management. Dr Xia provided facilities/equipment, institutional liaisons, and administrative support. Dr Hoffman and Dr Klappa provided consultation (including review of manuscript before submission).
- Received November 21, 2014.
- Accepted August 2, 2015.
- © 2016 American Physical Therapy Association