Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities

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Nicolaidis, C., Raymaker, D., Katz, M., Oschwald, M., Goe, R., Leotti, S., Grantham, L., Plourde, E., Salomon, J., Hughes, R. B., & Powers, L. E. (2015). Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities. Progress in Community Health Partnerships: Research, Education, and Action, 9(2), 157-170. https://doi.org/10.1353/cpr.2015.0037

Publication date: 1 Jun 2015 Added to AutiHub: 27 Oct 2026 Type: Article Article language: English
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Authors

Publication authors
11
Publication authors identified as autistic
1 / 11 (9.1%)
  1. Christina Nicolaidis
  2. Dora Raymaker *
  3. Marsha Katz
  4. Mary Oschwald
  1. Rebecca Goe
  2. Sandra Leotti
  3. Leah Grantham
  4. Eddie Plourde
  1. Janice Salomon
  2. Rosemary B. Hughes
  3. Laurie E. Powers

Abstract

Background: People with developmental disabilities (DD) are often not included as participants in research owing to a variety of ethical and practical challenges. One major challenge is that traditional measurement instruments may not be accessible to people with DD. Participatory research approaches promise to increase the participation of marginalized communities in research, but few partnerships have successfully used such approaches to conduct quantitative studies people with DD. Objective: To use a community-based participatory research (CBPR) approach to create an accessible, computer-assisted survey about violence and health in people with DD, and to psychometrically test adapted health instruments. Methods: Our academic–community partnership, composed of academic researchers, people with DD, and supporters, collaboratively selected and modified data collection instruments, conducted cognitive interviews and pilot tests, and then administered the full survey to 350 people with DD. Results: Although team members sometimes had opposing accommodation needs and adaptation recommendations, academic and community partners were able to work together successfully to adapt instruments to be accessible to participants with a wide range of DD. Results suggest the adapted health instruments had strong content validity and all but one had good to excellent internal consistency reliability (alpha, 0.81–0.94). The majority of participants (75%) responded that all or most of the questions were easy to understand. Conclusions: Researchers should consider using participatory approaches to adapting instruments so people with DD can be validly included in research.

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Cited references
41
With a DOI
36
Without a DOI, from raw bibliography text
0
4 / 41 (9.8%) cited references include at least one author identified as autistic.
References with data to complete
0 / 41 (0.0%)
References with detected author names
41 / 41 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
174
From DOI or external metadata
174
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
33 / 174 (19.0%) names are linked to an author already present in AutiHub. 141 / 174 (81.0%) names are not yet linked.
Names linked to a person identified as autistic
13 / 174 (7.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 13 / 33 (39.4%). Distinct people identified as autistic: 6 / 150 (4.0%).
  2. B. Edwards , Sheri Schneider (2000). Developing Usability Guidelines for AudioCasi Respondents with Limited Literacy Skills . Journal of Official Statistics, 16(3), 255-272.
    Type: Article OpenAlex: https://openalex.org/W59697699
    OpenAlex
  3. Mary Oschwald , Sandra Leotti , Dora Raymaker * , Marsha Katz , Rebecca Goe , Mark Harviston et al. (2014). 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, 7(3), 292-301. Elsevier BV.
    Type: Article DOI: 10.1016/j.dhjo.2014.01.002 OpenAlex: https://openalex.org/W1977636331
    OpenAlex OpenCitations
  4. Barbara A. Israel , David Satcher (2013). Methods For Community - Based Participatory Research For Health .
    Type: Book OpenAlex: https://openalex.org/W1498878353
    OpenAlex
  5. Cathy Donald Sherbourne , Anita L. Stewart (1991). The MOS social support survey . Social Science & Medicine, 32(6), 705-714. Elsevier BV.
    Type: Article DOI: 10.1016/0277-9536(91)90150-b OpenAlex: https://openalex.org/W2110356839
    OpenAlex OpenCitations
  6. Sheldon Cohen (1988). Perceived stress in a probability sample of the United States .
    Type: Article OpenAlex: https://openalex.org/W1682025172
    OpenAlex
  7. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2001). The PHQ-9 . Journal of General Internal Medicine, 16(9), 606-613. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1046/j.1525-1497.2001.016009606.x OpenAlex: https://openalex.org/W2132322340
    OpenAlex OpenCitations
  8. Ruth Northway , Robert Jenkins , Victoria Jones , Joyce Howarth , Zoe Hodges (2013). Researching Policy and Practice to Safeguard People With Intellectual Disabilities from Abuse: Some Methodological Challenges . Journal of Policy and Practice in Intellectual Disabilities, 10(3), 188-195. Wiley.
    Type: Article DOI: 10.1111/jppi.12037 OpenAlex: https://openalex.org/W1792588902
    OpenAlex
  9. Patricia A. Parmelee , Ira R. Katz (1990). Geriatric Depression Scale; To the Editor: . Journal of the American Geriatrics Society, 38(12), 1379-1379. Wiley.
    Type: Article DOI: 10.1111/j.1532-5415.1990.tb03461.x
    OpenCitations
  10. J. Mindham , C. A. Espie (2003). Glasgow Anxiety Scale for people with an Intellectual Disability (GAS‐ID): development and psychometric properties of a new measure for use with people with mild intellectual disability . Journal of Intellectual Disability Research, 47(1), 22-30. Wiley.
    Type: Article DOI: 10.1046/j.1365-2788.2003.00457.x OpenAlex: https://openalex.org/W1972433687
    OpenAlex OpenCitations
  11. Barbara A. Israel , Amy J. Schulz , Edith A. Parker , Adam B. Becker (1998). REVIEW OF COMMUNITY-BASED RESEARCH: Assessing Partnership Approaches to Improve Public Health . Annual Review of Public Health, 19(1), 173-202. Annual Reviews.
    Type: Article DOI: 10.1146/annurev.publhealth.19.1.173 OpenAlex: https://openalex.org/W2137460360
    OpenAlex OpenCitations
  12. PAULA RINARD RENKER , PEGGY TONKIN (2007). Postpartum Women's Evaluations of an Audio/Video Computer-Assisted Perinatal Violence Screen . CIN: Computers, Informatics, Nursing, 25(3), 139-147. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/01.ncn.0000270040.14541.37 OpenAlex: https://openalex.org/W2045364893
    OpenAlex OpenCitations
  13. Laurie E. Powers , Tracee Garner , Betsy Valnes , Peter Squire , Alison Turner , Todd Couture et al. (2007). Building a Successful Adult Life: Findings From Youth-Directed Research . Exceptionality, 15(1), 45-56. Informa UK Limited.
    Type: Article DOI: 10.1080/09362830709336925 OpenAlex: https://openalex.org/W1989661868
    OpenAlex
  14. Tony Gilbert (2004). Involving people with learning disabilities in research: issues and possibilities . Health and Social Care in the Community, 12(4), 298-308. Hindawi Limited.
    Type: Article DOI: 10.1111/j.1365-2524.2004.00499.x OpenAlex: https://openalex.org/W2136086346
    OpenAlex OpenCitations
  15. Paula Rinard Renker (2008). Breaking the Barriers: The Promise of Computer‐Assisted Screening for Intimate Partner Violence . Journal of Midwifery & Women's Health, 53(6), 496-503. Wiley.
    Type: Article DOI: 10.1016/j.jmwh.2008.07.017 OpenAlex: https://openalex.org/W1996066573
    OpenAlex OpenCitations
  16. C. F. Turner , L. Ku , S. M. Rogers , L. D. Lindberg , J. H. Pleck , F. L. Sonenstein (1998). Adolescent Sexual Behavior, Drug Use, and Violence: Increased Reporting with Computer Survey Technology . Science, 280(5365), 867-873. American Association for the Advancement of Science (AAAS).
    Type: Article DOI: 10.1126/science.280.5365.867 OpenAlex: https://openalex.org/W2154204770
    OpenAlex OpenCitations
  17. Sheldon Cohen , Tom Kamarck , Robin Mermelstein (1983). A Global Measure of Perceived Stress . Journal of Health and Social Behavior, 24(4), 385. SAGE Publications.
    Type: Article DOI: 10.2307/2136404 OpenAlex: https://openalex.org/W1996299251
    OpenAlex
  18. W. M. L. Finlay , E. Lyons (2001). Methodological issues in interviewing and using self-report questionnaires with people with mental retardation. Psychological Assessment, 13(3), 319-335. American Psychological Association (APA).
    Type: Article DOI: 10.1037//1040-3590.13.3.319 OpenAlex: https://openalex.org/W4229864968
    OpenAlex OpenCitations
  20. Susan Robinson-Whelen , Rosemary B. Hughes , Heather B. Taylor , John W. Hall , Lynn P. Rehm (2007). Depression self-management program for rural women with physical disabilities. Rehabilitation Psychology, 52(3), 254-262. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0090-5550.52.3.254 OpenAlex: https://openalex.org/W2009307137
    OpenAlex
  21. Michael Irwin , Kamal Haydari Artin , Michael N. Oxman (1999). Screening for Depression in the Older Adult . Archives of Internal Medicine, 159(15), 1701. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archinte.159.15.1701 OpenAlex: https://openalex.org/W2092434379
    OpenAlex OpenCitations
  22. Justine March , Betty Steingold , Susan Justice , Paula Mitchell (1997). Follow the Yellow Brick Road! People with Learning Difficulties as Co‐researchers . British Journal of Learning Disabilities, 25(2), 77-80. Wiley.
    Type: Article DOI: 10.1111/j.1468-3156.1997.tb00015.x OpenAlex: https://openalex.org/W2019368716
    OpenAlex
  23. Dorcas E. Beaton , Claire Bombardier , Francis Guillemin , Marcos Bosi Ferraz (2000). Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures . Spine, 25(24), 3186-3191. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00007632-200012150-00014 OpenAlex: https://openalex.org/W2156702515
    OpenAlex OpenCitations
  24. Matthew Chinman , Alexander S. Young , Terry Schell , Joseph Hassell , Jim Mintz (2004). Computer-Assisted Self-Assessment in Persons With Severe Mental Illness . The Journal of Clinical Psychiatry, 65(10), 1343-1351. Physicians Postgraduate Press, Inc.
    Type: Article DOI: 10.4088/jcp.v65n1008 OpenAlex: https://openalex.org/W2023781731
    OpenAlex OpenCitations
  25. Katherine McDonald , Dora Raymaker * (2013). Paradigm Shifts in Disability and Health: Toward More Ethical Public Health Research . American Journal of Public Health, 103(12), 2165-2173. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2013.301286 OpenAlex: https://openalex.org/W2134344619
    OpenAlex OpenCitations
  26. Joachim Gerich , Roland Lehner (2006). Video Computer-Assisted Self-Administered Interviews for Deaf Respondents . Field Methods, 18(3), 267-283. SAGE Publications.
    Type: Article DOI: 10.1177/1525822x06287535 OpenAlex: https://openalex.org/W2036734014
    OpenAlex
  27. Jan Walmsley (2001). Normalisation, Emancipatory Research and Inclusive Research in Learning Disability . Disability & Society, 16(2), 187-205. Informa UK Limited.
    Type: Article DOI: 10.1080/09687590120035807 OpenAlex: https://openalex.org/W2037974201
    OpenAlex
  28. Alex E. Y. Lee , Srinivasan Chokkanathan (2008). Factor structure of the 10‐item CES‐D scale among community dwelling older adults in Singapore . International Journal of Geriatric Psychiatry, 23(6), 592-597. Wiley.
    Type: Article DOI: 10.1002/gps.1944 OpenAlex: https://openalex.org/W2165987481
    OpenAlex OpenCitations
  29. Maria Ham , Nicola Jones , Ian Mansell , Ruth Northway , Louise Price , Glayne Walker (2004). ‘I’m a researcher!’ Working together to gain ethical approval for a participatory research study . Journal of Learning Disabilities, 8(4), 397-407. SAGE Publications.
    Type: Article DOI: 10.1177/1469004704047507 OpenAlex: https://openalex.org/W2041528607
    OpenAlex
  30. Edward B. Blanchard , Jacqueline Jones-Alexander , Todd C. Buckley , Catherine A. Forneris (1996). Psychometric properties of the PTSD checklist (PCL) . Behaviour Research and Therapy, 34(8), 669-673. Elsevier BV.
    Type: Article DOI: 10.1016/0005-7967(96)00033-2 OpenAlex: https://openalex.org/W2094767740
    OpenAlex OpenCitations
  31. Eleni Andreou , Evangelos C. Alexopoulos , Christos Lionis , Liza Varvogli , Charalambos Gnardellis , George P. Chrousos et al. (2011). Perceived Stress Scale: Reliability and Validity Study in Greece . International Journal of Environmental Research and Public Health, 8(8), 3287-3298. MDPI AG.
    Type: Article DOI: 10.3390/ijerph8083287 OpenAlex: https://openalex.org/W2133502190
    OpenAlex OpenCitations
  32. Brigit M. van Widenfelt , Philip D. A. Treffers , Edwin de Beurs , Bart M. Siebelink , Els Koudijs (2005). Translation and Cross-Cultural Adaptation of Assessment Instruments Used in Psychological Research With Children and Families . Clinical Child and Family Psychology Review, 8(2), 135-147. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10567-005-4752-1 OpenAlex: https://openalex.org/W2058582232
    OpenAlex OpenCitations
  33. Mary Oschwald , Paula Renker , Rosemary B. Hughes , Anne Arthur , Laurie E. Powers , Mary Ann Curry (2009). Development of an Accessible Audio Computer-Assisted Self-Interview (A-CASI) to Screen for Abuse and Provide Safety Strategies for Women With Disabilities . Journal of Interpersonal Violence, 24(5), 795-818. SAGE Publications.
    Type: Article DOI: 10.1177/0886260508317175 OpenAlex: https://openalex.org/W2068267622
    OpenAlex OpenCitations
  34. M. A. Verdugo , R. L. Schalock , K. D. Keith , R. J. Stancliffe (2005). Quality of life and its measurement: important principles and guidelines . Journal of Intellectual Disability Research, 49(10), 707-717. Wiley.
    Type: Article DOI: 10.1111/j.1365-2788.2005.00739.x OpenAlex: https://openalex.org/W2106007502
    OpenAlex OpenCitations
  35. Teresa A. Iacono (2006). Ethical challenges and complexities of including people with intellectual disability as participants in research . Journal of Intellectual & Developmental Disability, 31(3), 173-179. Informa UK Limited.
    Type: Article DOI: 10.1080/13668250600876392 OpenAlex: https://openalex.org/W2077536131
    OpenAlex
  36. Stephen P. McKenna , Lynda C. Doward (2005). The Translation and Cultural Adaptation of Patient-Reported Outcome Measures . Value in Health, 8(2), 89-91. Elsevier BV.
    Type: Article DOI: 10.1111/j.1524-4733.2005.08203.x OpenAlex: https://openalex.org/W2153821186
    OpenAlex OpenCitations
  37. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2002). The PHQ-15: Validity of a New Measure for Evaluating the Severity of Somatic Symptoms . Psychosomatic Medicine, 64(2), 258-266. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00006842-200203000-00008 OpenAlex: https://openalex.org/W2316878322
    OpenAlex OpenCitations
  38. Kathy Goggin , Nceba Gqaleni , Adonica Lindokuhle Mbhele , Mqansa Elliot Makhathini , Thanile Doreen Buthelezi , Sebenzile W Ndlovu et al. (2010). The Translation and Cultural Adaptation of Patient-reported Outcome Measures for a Clinical Study Involving Traditional Health Providers and Bio-medically Trained Practitioners. PubMed, 17(1), 273-294.
    Type: Article OpenAlex: https://openalex.org/W2153962512
    OpenAlex
  39. Angelo Swaine-Verdier , Lynda C. Doward , Peter Hagell , Hanne Thorsen , Stephen P. McKenna (2004). Adapting Quality of Life Instruments . Value in Health, 7, S27-S30. Elsevier BV.
    Type: Article DOI: 10.1111/j.1524-4733.2004.7s107.x OpenAlex: https://openalex.org/W2162514987
    OpenAlex
  40. William J. Marks, Jr (2015). Appendix G: Geriatric Depression Scale . Deep Brain Stimulation Management, 24(4), 212-212. Cambridge University Press.
    Type: Other DOI: 10.1017/cbo9781316026625.021 OpenAlex: https://openalex.org/W2412268812
    OpenAlex
  41. E M Andresen , J A Malmgren , W B Carter , D L Patrick (1994). Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). PubMed, 10(2), 77-84.
    Type: Article OpenAlex: https://openalex.org/W2613611060
    OpenAlex