Skip to main content
SpringerLink
Log in

On the Right Side of History: Community-Based Participatory Research and People with Developmental Disabilities

  • Invited Commentary
  • Published:
Current Developmental Disorders Reports Aims and scope Submit manuscript

Abstract

Community-based participatory research fosters more socially just and higher quality science. Strong collaborations between scientists and community members with developmental disabilities throughout all phases of research allows scientists to draw on insights into lived experiences to create research that is increasingly innovative, holistic, accurate, and accessible. These dynamics engender greater feelings of respect among research populations thereby encouraging their research participation; they also promote research better able to lead to knowledge translation. Equally as important, community-based participatory research helps scientists avoid pursuing research that is harmful to people with disabilities.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Israel BA, Schulz AJ, Parker EA, Becker AB. Community-based participatory research: policy recommendations for promoting a partnership approach in health research. Education for health. 2001;14(2):182–97.

    Article  CAS  PubMed  Google Scholar 

  2. 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(Suppl 1):S40–6. doi:10.2105/ajph.2009.184036.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.

    Article  PubMed  Google Scholar 

  4. Viswanathan M, Ammerman A, Eng E, Garlehner G, Lohr KN, Griffith D, et al. Community-based participatory research: assessing the evidence. Evid Rep Technol Assess (Summ). 2004;99:1–8.

    Google Scholar 

  5. McDonald KE, Stack E. You say you want a revolution: an empirical study of community-based participatory research with people with developmental disabilities. Disability and Health. 2016;9:201–7.

    Article  Google Scholar 

  6. Stack E, McDonald KE. Nothing about us without us: does action research in developmental disabilities research measure up? J Policy Pract Intellect Disabil. 2014;11(2):83–91.

    Article  Google Scholar 

  7. Northway R, Bennett D, Melsome M, Flood S, Howarth J, Jones R. Keeping safe and providing support: a participatory survey about abuse and people with intellectual disabilities. J Policy Pract Intellect Disabil. 2013;10(3):236–44.

    Article  Google Scholar 

  8. Oschwald M, Leotti S, Raymaker D, Katz M, Goe R, Harviston M, et al. Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities. Disability and health journal. 2014;7(3):292–301.

    Article  PubMed  Google Scholar 

  9. Platt L, Powers L, Leotti S, Hughes RB, Robinson-Whelen S, Osburn S, et al. The role of gender in violence experienced by adults with developmental disabilities. Journal of interpersonal violence. 2017;32(1):101–29.

    Article  PubMed  Google Scholar 

  10. Saxton M, Curry MA, Powers LE, Maley S, Eckels K, Gross J. “Bring my scooter so I can leave you” a study of disabled women handling abuse by personal assistance providers. Violence Against Women. 2001;7(4):393–417.

    Article  Google Scholar 

  11. Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE, Dern S, Baggs AE, et al. “Respect the way I need to communicate with you”: healthcare experiences of adults on the autism spectrum. Autism. 2015a; doi:10.1177/1362361315576221.

    PubMed  PubMed Central  Google Scholar 

  12. Nicolaidis C, Raymaker D, Katz M, Oshwald M, Goe R, Leotti S, Powers L. Participatory research to adapt measures of health and interpersonal violence for use by people with developmental disabilities. Prog Community Health Partnersh. 2015b;9(2):157–70.

    Article  PubMed  Google Scholar 

  13. McDonald KE, Raymaker DM. Paradigm shifts in disability and health: toward more ethical public health research. Am J Public Health. 2013;103(12):2165–73.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Kramer, J., & Schwartz, A.. A Participatory Approach to Developing the new Pediatric Evaluation of Disability Inventory Patient-Reported Outcome. American Journal of Occupational Therapy, (2016) 70(4_Supplement_1), 7011500002p7011500001-7011500002p7011500001.

  15. Nicolaidis C, Raymaker D, McDonald K, Kapp S, Weiner M, Ashkenazy E, et al. The development and evaluation of an online healthcare toolkit for autistic adults and their providers. Journal of of General Internal Medicine. 2016;31:1180.

    Article  Google Scholar 

  16. Nicolaidis C, Raymaker D, McDonald KE, Dern S, Ashkenazy E, Boisclair C, et al. Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic-community partnership with autistic self-advocates. Prog Community Health Partnersh. 2011;5(2):143–50. doi:10.1353/cpr.2011.0022.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Nicolaidis C, Raymaker D, McDonald KE, Dern S, Boisclair WC, Ashkenazy E, Baggs A. Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. 2013;28(6):761–9.

    Article  PubMed  Google Scholar 

  18. White GW. Consumer participation in disability research: the golden rule as a guide for ethical practice. Rehabilitation Psychology. 2002;47(4):438.

    Article  Google Scholar 

  19. Kramer JM, Kramer JC, García-Iriarte E, Hammel J. Following through to the end: the use of inclusive strategies to analyse and interpret data in participatory action research with individuals with intellectual disabilities. J Appl Res Intellect Disabil. 2011;24(3):263–73.

    Article  Google Scholar 

  20. Freedman RI. Ethical challenges in the conduct of research involving persons with mental retardation. Ment Retard. 2001;39(2):130–41.

    Article  CAS  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Public Health. Food Studies & Nutrition and The Burton Blatt Institute, Syracuse University, Syracuse, USA

    Katherine E. McDonald

Authors
  1. Katherine E. McDonald
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Katherine E. McDonald.

Ethics declarations

Conflict of Interest

Katherine E. McDonald declares that she has no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

McDonald, K.E. On the Right Side of History: Community-Based Participatory Research and People with Developmental Disabilities. Curr Dev Disord Rep 4, 11–13 (2017). https://doi.org/10.1007/s40474-017-0104-3

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40474-017-0104-3

Keywords

Search

Navigation