Developing, Testing, and Sustaining Rehabilitation Interventions Via Participatory Action Research


      Few published intervention studies in the rehabilitation literature have included consumers in the research process other than as study participants. This lack of consumer involvement in intervention research may contribute to the challenges encountered developing, translating, disseminating, and sustaining evidence-based rehabilitation interventions in clinical practice. The overall objective of this article is to promote the integration of participatory action research (PAR) into rehabilitation intervention research as a mechanism for addressing these gaps. First, we outline essential components of a PAR model across 5 key phases of intervention research, specifically: agenda setting, methods, implementation, diffusion/dissemination, and sustainability. Second, we describe the use of PAR in rehabilitation intervention research within each of these phases by reviewing relevant literature and by providing an illustrative research example from a randomized controlled trial that integrated PAR throughout the research process. Finally, we conclude with a discussion of 5 specific recommendations for promoting the integration of PAR into rehabilitation intervention research.


      List of abbreviations:

      ACA (Amputee Coalition of America), AHRQ (Agency for Healthcare Research and Quality), CBPR (community-based participatory research), JHU (Johns Hopkins University), PALS (Promoting Amputee Life Skills), PAR (participatory action research), RCT (randomized controlled trial)
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        • Olkin R.
        What psychotherapists should know about disability.
        Guilford Pr, New York1999
        • Dembo T.
        The paths to useful knowledge.
        Rehabil Psychol. 1974; 21: 124-128
        • Tate D.G.
        • Pledger C.
        An integrative conceptual framework of disability. New directions for research.
        Am Psychol. 2003; 58: 289-295
        • Wright B.A.
        Physical disability: a psychosocial approach.
        2nd ed. Harper & Row, New York1983
        • Dembo T.
        Sensitivity of one person to another.
        Rehabil Lit. 1964; 25: 231-235
        • White G.W.
        • Suchowierska M.
        • Campbell M.
        Developing and systematically implementing participatory action research.
        Arch Phys Med Rehabil. 2004; 85: S3-12
        • Andrews E.E.
        • Williams J.L.
        • Vandecreek L.
        • Allen J.B.
        Experiences of parents of children with congenital limb differences with health care providers: a qualitative study.
        Rehabil Psychol. 2009; 54: 217-221
        • Baker T.A.
        • Wang C.C.
        Photovoice: use of a participatory action research method to explore the chronic pain experience in older adults.
        Qual Health Res. 2006; 16: 1405-1413
        • Jenkin P.
        • Koch T.
        • Kralik D.
        The experience of fatigue for adults living with HIV.
        J Clin Nurs. 2006; 15: 1123-1131
        • Williams A.S.
        Making diabetes education accessible for people with visual impairment.
        Diabetes Educ. 2009; 35: 612-621
        • Taylor R.R.
        • Braveman B.
        • Hammel J.
        Developing and evaluating community-based services through participatory action research: two case examples.
        Am J Occup Ther. 2004; 58: 73-82
        • Timmons J.C.
        • Hall A.C.
        • Bose J.
        • Wolfe A.
        • Winsor J.
        Choosing employment: factors that impact employment decisions for individuals with intellectual disability.
        Intellect Dev Disabil. 2011; 49: 285-299
        • Yeager P.
        • Kaye H.S.
        • Reed M.
        • Doe T.M.
        Assistive technology and employment: experiences of Californians with disabilities.
        Work. 2006; 27: 333-344
        • Friesen M.N.
        • Krassikouva-Enns O.
        • Ringaert L.
        • Isfeld H.
        Community support systems for farmers who live with disability.
        J Agromedicine. 2010; 15: 166-174
        • Blomqvist K.
        • Theander E.
        • Mowide I.
        • Larsson V.
        What happens when you involve patients as experts? A participatory action research project at a renal failure unit.
        Nurs Inq. 2010; 17: 317-323
        • Montgomery P.
        • Forchuk C.
        • Duncan C.
        • Rose D.
        • Bailey P.H.
        • Veluri R.
        Supported housing programs for persons with serious mental illness in rural northern communities: a mixed method evaluation.
        BMC Health Serv Res. 2008; 8: 156
        • Nelson G.
        • Hall G.B.
        • Forchuk C.
        Current and preferred housing of psychiatric consumers/survivors.
        Can J Commun Ment Health. 2003; 22: 5-19
        • Lane F.J.
        • Huyck M.H.
        • Troyk P.
        Looking ahead: planning for the first human intracortical visual prosthesis by using pilot data from focus groups of potential users.
        Disabil Rehabil Assist Technol. 2011; 6: 139-147
        • Blanck P.
        • Ritchie H.
        • Schmeling J.
        • Klein D.
        Technology for independence: a community-based resource center.
        Behav Sci Law. 2003; 21: 51-62
        • Barnett S.
        • Klein J.D.
        • Pollard Jr., R.Q.
        • et al.
        Community participatory research with deaf sign language users to identify health inequities.
        Am J Public Health. 2011; 101: 2235-2238
        • Amtmann D.
        • Cook K.F.
        • Johnson K.L.
        • Cella D.
        The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research.
        Arch Phys Med Rehabil. 2011; 92: S12-S19
        • Kisala P.A.
        • Tulsky D.S.
        Opportunities for CAT applications in medical rehabilitation: development of targeted item banks.
        J Appl Meas. 2010; 11: 315-330
      1. U.S. Department of Human Health Services, Office of Behavioral and Social Sciences Research. Community-based participatory research. Available at: Accessed December 5, 2011.

        • Slater J.S.
        • Finnegan Jr., J.R.
        • Madigan S.D.
        Incorporation of a successful community-based mammography intervention: dissemination beyond a community trial.
        Health Psychol. 2005; 24: 463-469
        • Sung N.S.
        • Crowley Jr., W.F.
        • Genel M.
        • et al.
        Central challenges facing the national clinical research enterprise.
        JAMA. 2003; 289: 1278-1287
        • Leykum L.K.
        • Pugh J.A.
        • Lanham H.J.
        • Harmon J.
        • McDaniel Jr., R.R.
        Implementation research design: integrating participatory action research into randomized controlled trials.
        Implement Sci. 2009; 4: 69
        • Jones L.
        • Wells K.
        Strategies for academic and clinician engagement in community-participatory partnered research.
        JAMA. 2007; 297: 407-410
        • Wallerstein N.
        • Duran B.
        Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity.
        Am J Public Health. 2010; 100: S40-S46
        • Kerner J.
        • Rimer B.
        • Emmons K.
        Introduction to the special section on dissemination: dissemination research and research dissemination: how can we close the gap?.
        Health Psychol. 2005; 24: 443-446
        • Seelman K.D.
        Converging, pervasive technologies: chronic and emerging issues and policy adequacy.
        Assist Technol. 2008; 20 (quiz 138): 126-137
        • Hassouneh D.
        • Alcala-Moss A.
        • McNeff E.
        Practical strategies for promoting full inclusion of individuals with disabilities in community-based participatory intervention research.
        Res Nurs Health. 2011; 34: 253-265
        • Kelly P.J.
        Practical suggestions for community interventions using participatory action research.
        Public Health Nurs. 2005; 22: 65-73
      2. Agency for Healthcare Research and Quality. Community-based participatory research: assessing the evidence. Rockville. 2004. Evidence Report/Technology Assessment No. 99.

        • Wegener S.T.
        • Hofkamp S.
        • Ehde D.M.
        Interventions for psychological issues in amputation: a team approach.
        in: Gallagher P. Desmond D. MacLachlan M. Psychoprosthetics. Springer, London2008: 91-106
        • Langston A.L.
        • McCallum M.
        • Campbell M.K.
        • Robertson C.
        • Ralston S.H.
        An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial.
        Clin Trials. 2005; 2: 80-87
        • Ravesloot C.H.
        • Seekins T.
        • Cahill T.
        • Lindgren S.
        • Nary D.E.
        • White G.
        Health promotion for people with disabilities: development and evaluation of the Living Well with a Disability program.
        Health Educat Res. 2007; 22: 522-531
        • Nomura M.
        • Makimoto K.
        • Kato M.
        • et al.
        Empowering older people with early dementia and family caregivers: a participatory action research study.
        Int J Nurs Stud. 2009; 46: 431-441
        • Hibbard M.R.
        • Cantor J.
        • Charatz H.
        • et al.
        Peer support in the community: initial findings of a mentoring program for individuals with traumatic brain injury and their families.
        J Head Trauma Rehabil. 2002; 17: 112-131
        • Jernigan V.B.
        • Lorig K.
        The internet diabetes self-management workshop for American Indians and Alaska Natives.
        Health Promot Pract. 2011; 12: 261-270
        • Langston A.L.
        • Campbell M.K.
        • Fraser W.D.
        • MacLennan G.S.
        • Selby P.L.
        • Ralston S.H.
        Randomized trial of intensive bisphosphonate treatment versus symptomatic management in Paget's disease of bone.
        J Bone Miner Res. 2010; 25: 20-31
        • Wegener S.T.
        • Mackenzie E.J.
        • Ephraim P.
        • Ehde D.
        • Williams R.
        Self-management improves outcomes in persons with limb loss.
        Arch Phys Med Rehabil. 2009; 90: 373-380
        • Darnall B.D.
        • Ephraim P.
        • Wegener S.T.
        • et al.
        Depressive symptoms and mental health service utilization among persons with limb loss: results of a national survey.
        Arch Phys Med Rehabil. 2005; 86: 650-658
        • Isenberg P.
        Introduction to the Amputee Coalition's National Peer Network.
        inMotion. October 2007; 17
      3. Wegener ST, Ephraim P, Mackenzie EJ, et al. Promoting Amputee Life Skills (PALS) RCT: self-management improves outcomes in persons with limb loss. New Orleans. American Association of Health & Disability and National Center for Birth Defects & Developmental Disability (CDC) Conference; 2009 Apr; New Orleans, LA.

      4. Rossbach P, Mackenzie EJ, Wegener ST, et al. Promoting Amputee Life Skills (PALS). Annual Meeting of the American Academy of Orthotists and Prosthetists; 2006; Chicago, IL.

      5. Ehde D, Wegener S, Mckenzie E, Ephraim P, Williams R. Promoting amputee life skills. In: Gallagher P, chair. Psychosocial adaptation to a prosthesis, symposium presented at the 12th World Congress of the International Society for Prosthetics and Orthotics. Vancouver (Canada) 2007.

      6. Calhoun K. Amputee Coalition Working to Enhance Partnership With the Centers for Disease Control. Advocacy Matters 2009. Available at: Accessed November 5, 2012.

        • Lorig K.R.
        • Holman H.
        Self-management education: history, definition, outcomes, and mechanisms.
        Ann Behav Med. 2003; 26: 1-7
        • Lewin K.
        Action research and minority problems.
        in: Lewis G.W. Resolving social conflicts. Harper & Row, New York1946/1948: 201-216
        • Shura R.
        • Siders R.A.
        • Dannefer D.
        Culture change in long-term care: participatory action research and the role of the resident.
        Gerontologist. 2011; 51: 212-225
        • Glasson J.
        • Chang E.
        • Chenoweth L.
        • et al.
        Evaluation of a model of nursing care for older patients using participatory action research in an acute medical ward.
        J Clin Nurs. 2006; 15: 588-598
        • Mitchell E.A.
        • Conlon A.M.
        • Armstrong M.
        • Ryan A.A.
        Towards rehabilitative handling in caring for patients following stroke: a participatory action research project.
        J Clin Nurs. 2005; 14: 3-12
        • Minkler M.
        Using participatory action research to build healthy communities.
        Public Health Rep. 2000; 115: 191-197
        • Hancock T.
        The evolution, impact and significance of the healthy cities/healthy communities movement.
        J Public Health Policy. 1993; 14: 5-18
        • Blumenthal D.S.
        Is community-based participatory research possible?.
        Am J Prev Med. 2011; 40: 386-389
        • Israel B.A.
        • Schulz A.J.
        • Parker E.A.
        • Becker A.B.
        Review of community-based research: assessing partnership approaches to improve public health.
        Annu Rev Public Health. 1998; 19: 173-202
        • Ahmed S.M.
        • Palermo A.G.
        Community engagement in research: frameworks for education and peer review.
        Am J Public Health. 2010; 100: 1380-1387
      7. Israel B.A. Eng E. Schulz A.J. Parker E.A. Methods in community-based participatory research for health. Jossey-Bass, San Francisco2005
      8. Minkler M. Wallerstein N. Community based participatory research for health. Jossey-Bass, San Francisco2003
        • Hubbard G.
        • Kidd L.
        • Donaghy E.
        • McDonald C.
        • Kearney N.
        A review of literature about involving people affected by cancer in research, policy and planning and practice.
        Patient Educ Couns. 2007; 65: 21-33
        • Ottmann G.F.
        • Laragy C.
        Developing consumer-directed care for people with a disability: 10 lessons for user participation in health and community care policy and program development.
        Aust Health Rev. 2010; 34: 390-394
      9. National Institutes of Health. Health NIo. Recovery Act Limited Competition: Building Sustainable Community-Linked Infrastructure to Enable Health Science Research (RC4). 2009. Available at: Accessed September 25, 2012.

        • Lovato L.C.
        • Hill K.
        • Hertert S.
        • Hunninghake D.B.
        • Probstfield J.L.
        Recruitment for controlled clinical trials: literature summary and annotated bibliography.
        Control Clin Trials. 1997; 18: 328-352
        • Chen P.G.
        • Diaz N.
        • Lucas G.
        • Rosenthal M.S.
        Dissemination of results in community-based participatory research.
        Am J Prev Med. 2010; 39: 372-378
        • Gebbie K.M.
        • Rosenstock L.
        • Hernandez L.M.
        • Institute of Medicine (U.S.)
        Committee on Educating Public Health Professionals for the 21st Century. Who will keep the public healthy?: educating public health professionals for the 21st century.
        National Academy Pr, Washington (DC)2003
      10. Kellogg Health Scholars. Community track. Available at: Accessed December 1, 2011.

      11. Developing and Sustaining Community-Based Participatory Research Partnerships: A Skill-Building Curriculum. Available at: Accessed December 1, 2011.

      12. American Cancer Society. RFA: pilot studies using community-based participatory research to reduce cancer health disparities. Available at: Accessed December 5, 2011.