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Promoting Self-Determination Skills Among Youth with Special Health Needs Using Participatory Action Research

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Abstract

A team of 20 high school and college students with physical and/or health and orthopedic impairments was engaged in participatory action research (PAR) to systematically test strategies to solve problems they confronted in their daily lives. PAR goals were set by the participating youth with special health needs (YSHN) who were involved in every step of the research process from problem identification to dissemination of results. In the study reported here, all participants made progress in analyzing their personal needs, selecting a goal, and implementing a strategy to achieve the goal. In addition, the YSHN identified a common goal of visiting public venues, such as shopping malls, and conducted PAR projects to assess the accessibility of such venues. The results indicate that PAR is a viable method for involving YSHN with varied skills, limitations, and experiences to address personal issues as well as barriers they all confront. PAR appears to be a promising methodology for assisting YSHN in their quest for self-determination and the IDEA (1997) mandate to include adolescents in decision making.

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References

  • Americans with Disability Act of 1990, 42 U.S.C. § 12101 et seq.

  • Beamish, W., and Bryer, F. (1999). Programme quality in Australian early special education: An example of participatory action research. Child Care Health Dev. 25(6): 457–472.

    Article  CAS  PubMed  Google Scholar 

  • Bruyere, S. (1993). Participatory action research: Overview and implications for family members of persons with disabilities. J. Vocat. Rehabil. 3(2): 62–68.

    Google Scholar 

  • Burstein, K., and Bryan, T. (2000, August). Parents as partners in the medical home. Excep. Parent 30(8): 29–31.

    Google Scholar 

  • Bryan, T., and Bryan, J. (1997). Amazing discoveries manual and implementation guide. Reston, VA: Foundation for Exceptional Innovations.

    Google Scholar 

  • Graves, W. (1991, April). Participatory action research: A new paradigm for disability and rehabilitation research. In Paper presented at The Annual Conference of the American Association for Counseling and Development, Reno, NV.

  • Individuals with Disabilities Education Act Amendments of 1997, 20 U.S.C. § 1400 et seq.

  • Keith, P. B., Ahrams, P., and McLaughlin, J. (1993). Using state holders in special education research: How does it influence the research process? In Paper presented at The Annual Meeting of the American Education Research Association, Atlanta, GA.

  • Maternal and Child Health Bureau. (1995). National agenda for children with special health care needs: Achieving goals 2000. Rockville, MD: Author.

    Google Scholar 

  • McTaggart, R. (1991). Principles for participatory action research. Adult Educ. Q. 41(3): 168–187.

    Google Scholar 

  • Miller, N. (1994). Participatory action research: Principles, politics, and possibilities. New Dir. Adult Cont. Educ. 63: 69–80.

    Google Scholar 

  • Newacheck, P. W., and Stoddard, J. J. (1994). Prevalence and impact of multiple childhood chronic illnesses. J. Pediat. 124(1): 40–47.

    CAS  PubMed  Google Scholar 

  • O’Cummings, M. M. (2001). Preparing for life, not death: Promoting self-determination in adolescents with orthopedic and other health impairments. Unpublished doctoral dissertation. Arizona State University, Arizona.

  • Park, H. S., Gonsier-Gerdin, J., Hoffman, S., Whaley, S., and Yount, M. (1998). Applying the participatory action research model to the study of social inclusion at worksites. J. Assoc. Persons Severe Handicaps 23(3): 189–202.

    Google Scholar 

  • Salisbury, C. L., Wilson, L. L., and Palombaro, M. M. (1998). Promotng inclusive schooling practices through practitioner directed inquiry. J. Assoc. Persons Severe Handicaps 23(3): 223–237.

    Google Scholar 

  • Sandoval, J., Bryan, T., and Burstein, K. (2002, July). Getting youth up to PAR: Using participatory action research to increase self-determination skills. Excep. Parent 32(7): 36–38.

    Google Scholar 

  • Santelli, B., Singer, G. H. S., DiVenere, N., Ginsberg, C., and Powers, L. (1998). Participatory action research: Reflections on critical incidents in a PAR project. J. Assoc. Persons Severe Handicaps 23(3): 211–222.

    Google Scholar 

  • Sarri, R., and Sarri, C. (1992). Participatory action research in two communities in Bolivia and the United States. Int. Social Work 35: 267–280.

    Google Scholar 

  • Turnbull, A., Friesen, B. J., and Ramirez, C. (1998). Participatory action research as a model for conducting family research. J. Assoc. Persons Severe Handicaps 23(3): 178–188.

    Google Scholar 

  • Wehmeyer, M. L. (1992). Self-determination: Critical skills for outcome-oriented transition services. J. Vocat. Special Needs Educ. 15: 3–9.

    Google Scholar 

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Correspondence to Karen Burstein.

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Burstein, K., Bryan, T. & Chao, PC. Promoting Self-Determination Skills Among Youth with Special Health Needs Using Participatory Action Research. J Dev Phys Disabil 17, 185–201 (2005). https://doi.org/10.1007/s10882-005-3688-1

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