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Director's Message: Enhancing the Impact of Nursing Research Through Community-Based Participatory Research

Nurse scientists play a critical role in providing the information necessary to improve health outcomes because of their unique combination of research skills and their clinical expertise. The involvement of nurse scientists in health research bridges the gaps between the bench, the research clinic, and communities, and translates the findings to clinical care.

A critical component of the effort to improve the health of individuals, families, and communities involves identifying which interventions work best and incorporating those successful strategies into the general population. Central to dissemination and implementation research is the recognition that efforts to advance clinical care and improve health outcomes must include the involvement of stakeholders-patients, families, community leaders, and health care providers-through an approach known as Community Engaged Research (CEnR) [i]. CEnR consists of a spectrum of involvement by the community in the research activity. Perhaps the most common type of CEnR, involving a high level of participation by the community, is community-based participatory research (CBPR) [ii]. Inclusion of these stakeholders adds their strengths and expertise to the successful adoption of effective interventions. Direct participation of patients, community members, and providers in the conduct of research prioritizes the specific wants and needs of the affected groups, thereby increasing the likelihood of achieving a study's objectives. Otherwise, an intervention developed in the vacuum of academic research risks initial failure, unsuccessful implementation, or less than satisfactory dissemination.

NINR-supported science is wide-ranging (Table 1), with direct relevance to patients and those who care for them. As such, it represents an ideal "laboratory" in which CBPR can be conducted.

Table I: The Scope of Nursing Science
Gain a better understanding of the physical, behavioral, cultural, and environmental influences on health status to advance the development of culturally tailored interventions to prevent illness and promote health
Engage individuals with chronic and/or complex conditions as active participants in managing their own health
Provide caregivers with better tools for fulfilling their caregiving responsibilities and maintaining their own quality of life
Develop palliative care strategies to help individuals and families manage the symptoms of life-limiting conditions and plan for end-of-life decisions
Use innovative technologies to enhance access to healthcare; facilitate communications between patients, families, and health care providers
Develop novel interventions that deliver personalized care and real-time health information

In CBPR, the topic is of identified importance to the community and the role of research "subject" shifts to that of research "participant."

Some examples of projects supported, in part, by NINR illustrate the use of CBPR approaches, often with beneficial impact:

  • Investigators from Columbia University worked with residents of the adjacent Washington Heights/Inwood neighborhood, with a predominantly Latino Dominican population, to develop health infographics [iii]. A multidisciplinary team evaluated and modified informational material to support health self-management, such as healthy eating and following health provider instructions about blood pressure, stress, and body weight. Community member input was invaluable for ensuring cultural relevance and intelligibility of the infographics.
  • A pilot project was conducted in Philadelphia by a team of academic researchers and community members to develop meaningful indicators in evaluating a youth violence prevention program [iv]. Community viewpoints on measuring success of such programs were compared with standardized youth survey questions for the program's assessment. The effort established a process for developing locally relevant outcome measures for community-based research.
  • In Allegheny County, Pennsylvania, community members, health care and social service providers, and University of Pittsburgh researchers collaborated to develop a health support network for Latino immigrant men. This multidisciplinary group assessed the needs of the community and created a program to improve social support and health care access, including the training of lay health advisers from the community. Lay health adviser involvement in the process evaluation was an essential component in tailoring activities to the population of the local community [v].

Key factors of successful CBPR include:

  • Mutual respect, reciprocal relationships, and open and shared communications
  • Mechanisms to foresee problems and generate solutions
  • Application of results
  • Reciprocal transfer of capacity and knowledge
  • Balance between research and action
  • Committed partnerships and commitment to sustainability

Community participation in the dissemination of information and interventions can be garnered through social media outlets. These lines of communication can expand the reach of community-based research efforts by linking a range of popular and niche publications, as well as professional, community, and culturally specific websites.

What are the benefits of CBPR?

  • It increases the quality, translational value, and real-world relevance of research
  • It identifies barriers to implementation and adoption
  • It leverages capabilities in community-driven improvements
  • It addresses persistent and emerging health disparities amidst growing racial and cultural diversity across the country, with tangible potential to correct health care inequalities

CBPR has proven itself a critical tool in the development and translation of strategies to improve public health. Nurse scientists, given their unique role as both clinicians and researchers, are ideally positioned to conduct CBPR-based studies that improve health. Nursing science has led to tremendous improvements in health and quality of life. Let us continue using the power of nursing science to build a healthier society for all.

Patricia A. Grady, PhD, RN, FAAN
Director
National Institute of Nursing Research
National Institutes of Health


[i] https://catalyst.harvard.edu/pdf/regulatory/CEnR_Webpage_101_Presentation.pdf

[ii] Minkler M, Salvatore AL.  Participatory approaches for study design and analysis in dissemination and implementation research.  pp. 192 - 212.  In Dissemination and Implementation Research in Health:  translating science to practice.  Brownson RC, Colditz GA, Proctor EK (eds).  Oxford Univ Press.  2012

[iii] Arcia A, Suero-Tejeda N, Bales ME, Merrill JA, Yoon S, Woollen J, Bakken S. Sometimes more is more: iterative participatory design of infographics for engagement of community members with varying levels of health literacy. J Am Med Inform Assoc. 2016 Jan;23(1):174-83. R01 HS01853 and R01 HS022961 (AHRQ); T32 NR007969, T15 LMLM007075, and UL1 TR000040

[iv] McDonald CC, Richmond TS, Guerra T, Thomas NA, Walker A, Branas CC, Tenhave TR, Vaughn NA, Leff SS, Hausman AJ. Methods for linking community views to measureable outcomes in a youth violence prevention program. Prog Community Health Partnersh. 2012 Winter;6(4):499-506. 5 U49 CE001093 (CDC); F31 NR011107; T32NR007100

[v] Documet PI, Macia L, Thompson A, Gonzalez M, Boyzo R, Fox AR, Guadamuz TE. A Male Promotores Network for Latinos: Process Evaluation From a Community-Based Participatory Project. Health Promot Pract. 2016 May;17(3):332-42. R21 NR011138

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