Research ArticleSpecial Communication

Community-Engagement Strategies of the Developmental Disabilities Practice-based Research Network (DD-PBRN)

Carl V. Tyler and James J. Werner
The Journal of the American Board of Family Medicine November 2014, 27 (6) 831-838; DOI: https://doi.org/10.3122/jabfm.2014.06.140022

References

  1. 1.↵
    1. Green LA,
    2. Hickner J
    . A short history of primary care practice-based research networks: from concept to essential research laboratories. J Am Board Fam Med 2006;19:1–10.
    OpenUrlFREE Full Text
  2. 2.↵
    Administration of Intellectual and Developmental Disabilities (AIDD). Developmental Disabilities Assistance and Bill of Rights Acts of 2000. Washington, DC: Administration for Community Living, US Department of Health and Human Services; 2000. Available from: http://www.acl.gov/Programs/AIDD/DDA_BOR_ACT_2000/index.aspx. Accessed July 9, 2014.
  3. 3.↵
    1. Morstad D
    . How prevalent are intellectual and developmental disabilities in the United States? Watertown (WI): Bethesda Institute; 2012. Available from: http://bethesdainstitute.org/document.doc?id=413. Accessed July 9, 2014.
  4. 4.↵
    1. Williamson HJ,
    2. Perkins EA
    . Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports. Intellect Dev Disabil 2014;52:147–59.
    OpenUrlPubMed
  5. 5.↵
    1. Krahn GL,
    2. Fox MH
    . Health disparities of adults with intellectual disabilities: what do we know? What do we do? J Appl Res Intellect Disabil 2014;27:431–46.
    OpenUrlPubMed
  6. 6.↵
    1. Andresen EM,
    2. Peterson-Besse JJ,
    3. Krahn GL,
    4. Walsh ES,
    5. Horner-Johnson W,
    6. Iezzoni LI
    . Pap, mammography, and clinical breast examination screening among women with disabilities: a systematic review. Womens Health Issues 2013;23:e205–14.
    OpenUrlPubMed
  7. 7.↵
    1. Krahn GL,
    2. Hammond L,
    3. Turner A
    . A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev 2006;12:70–82.
    OpenUrlCrossRefPubMedWeb of Science
  8. 8.↵
    1. Tyler CV Jr.,
    2. Snyder CW,
    3. Zyzanski SJ
    . Caring for adults with mental retardation: survey of family practice residency program directors. Mental Retard 1999;37:347–52.
    OpenUrl
  9. 9.↵
    1. Wilkinson J,
    2. Dreyfus D,
    3. Cerreto M,
    4. Bokhour B
    . “Sometimes I feel overwhelmed”: educational needs of family physicians caring for people with intellectual disability. Intellect Dev Disabil 2012;50:243–50.
    OpenUrlPubMed
  10. 10.↵
    1. Holder M,
    2. Waldman HB,
    3. Hood H
    . Preparing health professionals to provide care to individuals with disabilities. Int J Oral Sci 2009;1:66–71.
    OpenUrlPubMed
  11. 11.↵
    1. Pueschel SM,
    2. Murphy A
    . Assessment of counseling practices at the birth of a child with Down's syndrome. Am J Ment Defic 1976;81:325–30.
    OpenUrlWeb of Science
  12. 12.↵
    1. Bronner F,
    2. Harris RS,
    3. Maletskos CJ,
    4. Benda CE
    . Studies in calcium metabolism; the fate of intravenously injected radiocalcium in human beings. J Clin Invest 1956;35:78–88.
    OpenUrlCrossRefPubMedWeb of Science
  13. 13.↵
    1. Rothman DJ
    . Were Tuskegee and Willowbrook “studies in nature?” Hastings Cent Rep 1982;12:5–7.
    OpenUrl
  14. 14.↵
    1. Ward R,
    2. Krugman S,
    3. Giles JP,
    4. Jacobs AM,
    5. Bodansky O
    . Infectious hepatitis: studies of its natural history and prevention. N Engl J Med 1958;258:407–16.
    OpenUrlPubMedWeb of Science
  15. 15.↵
    1. Krugman S,
    2. Ward R,
    3. Giles JP,
    4. Jacobs AM
    . Experimental transmission and trials of passive-active immunity in viral hepatitis. AMA J Dis Child 1957;94:409–11.
    OpenUrl
  16. 16.↵
    1. Hornblum AM,
    2. Newman JL,
    3. Dober GJ
    . Against their will: the secret history of medical experimentation in children in Cold War America. New York: Palgrave Macmillan; 2013.
  17. 17.↵
    1. Lawson KL,
    2. Carlson K,
    3. Shynkaruk JM
    . The portrayal of Down syndrome in prenatal screening information pamphlets. J Obstet Gynaecol Can 2012;34:760–8.
    OpenUrlPubMed
  18. 18.↵
    1. Hippman C,
    2. Inglis A,
    3. Austin J
    . What is a “balanced” description? Insight from parents of individuals with Down syndrome. J Genet Couns 2012;21:35–44.
    OpenUrlPubMed
  19. 19.↵
    1. Bauer PE
    . Reaching across the disability divide: the case for collaboration with the disability community to construct a robust informed consent process around prenatal screening and diagnosis. Am J Med Genet A 2011;155A:1788–90.
    OpenUrl
  20. 20.↵
    1. Strauss D,
    2. Shavelle R,
    3. Baumeister A,
    4. Anderson T
    . Mortality in persons with developmental disabilities after transfer into community care. Am J Ment Retard 1998;102:569–81.
    OpenUrlCrossRefPubMedWeb of Science
  21. 21.↵
    1. Strauss D,
    2. Kastner TA,
    3. Shavelle R
    . Mortality of adults with developmental disabilities living in California institutions and community care, 1985–1994. Ment Retard 1998;36:360–71.
    OpenUrlPubMed
  22. 22.↵
    1. Tyler CV
    Ohio Developmental Disabilities Council, funder; Tyler CV , director. Optimizing the Primary care of individuals with intellectual and other developmental disabilities: everyone is important! DVD. Cleveland (OH): Cleveland Clinic; 2011.
  23. 23.↵
    1. Westfall JM,
    2. VanVorst RF,
    3. Main DS,
    4. Herbert C
    . Community-based participatory research in practice-based research networks. Ann Fam Med 2006;4:8–14.
    OpenUrlAbstract/FREE Full Text
  24. 24.↵
    1. Knapp JR,
    2. Smith BR,
    3. Sprinkle TA
    . Clarifying the relational ties of organizational belonging: understanding the roles of perceived insider status, psychological ownership, and organizational identification. J Leadersh Organ Stud 2014;21:273–85.
    OpenUrl
  25. 25.↵
    1. Getrich CM,
    2. Sussman AL,
    3. Campbell-Voytal K,
    4. et al
    . Cultivating a cycle of trust with diverse communities in practice-based research: a report from PRIME Net. Ann Fam Med 2013;11:550–8.
    OpenUrlAbstract/FREE Full Text
  26. 26.↵
    1. Likumahuwa S,
    2. Song H,
    3. Singal R,
    4. et al
    . Building research infrastructure in community health centers: a Community Health Applied Research Network (CHARN) report. J Am Board Fam Med 2013;26:579–87.
    OpenUrlAbstract/FREE Full Text
  27. 27.↵
    1. DeHaven MJ,
    2. Gimpel N
    . Reaching out to those in need: the case for community health science. J Am Board Fam Med 2007;20:527–32.
    OpenUrlAbstract/FREE Full Text
  28. 28.↵
    LA Net Community Health Resource Network [homepage]. Available from: http://www.lanetpbrn.net. Accessed July 9, 2014.
  29. 29.↵
    1. Williamson AA,
    2. Knox L,
    3. Guerra NG,
    4. Williams KR
    . A pilot randomized trial of community-based parent training for immigrant Latina mothers. Am J Community Psychol 2014;53:47–59.
    OpenUrlPubMed
  30. 30.↵
    1. Knox LM,
    2. Aspy CB
    . Quality improvement as a tool for translating evidence based interventions into practice: what the youth violence prevention community can learn from healthcare. Am J Community Psychol 2011;48:56–64.
    OpenUrlCrossRefPubMedWeb of Science
  31. 31.↵
    1. Guerra NG,
    2. Knox L
    . How culture impacts the dissemination and implementation of innovation: a case study of the Families and Schools Together program (FAST) for preventing violence with immigrant Latino youth. Am J Community Psychol 2008;41:304–13.
    OpenUrlCrossRefPubMedWeb of Science
  32. 32.↵
    1. Knox L,
    2. Hahn RG,
    3. Lane C
    . A comparison of unsedated colonoscopy and flexible sigmoidoscopy in the family medicine setting: an LA Net study. J Am Board Fam Med 2007;20:444–50.
    OpenUrlAbstract/FREE Full Text
  33. 33.↵
    1. Forbat L,
    2. McCann L
    . Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda. Eur J Cancer Care (Engl) 2010;19:91–7.
    OpenUrlPubMed
  34. 34.↵
    1. Clark LI,
    2. O'Toole MS
    . Intellectual impairment and sexual health: information needs. Br J Nurs 2007;16:154–6.
    OpenUrlPubMed
  35. 35.↵
    1. Walmsley J
    . Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nurs Inq 2004;11:54–64.
    OpenUrlCrossRefPubMed
  36. 36.↵
    1. Tuffrey-Wijne I
    . The palliative care needs of people with intellectual disabilities: a literature review. Palliat Med 2003;17:55–62.
    OpenUrlAbstract/FREE Full Text
  37. 37.↵
    1. Janicki MP,
    2. Dalton AJ,
    3. Henderson CM,
    4. Davidson PW
    . Mortality and morbidity among older adults with intellectual disability: health services considerations. DisabilRehabil 1999; 21:284–94.
    OpenUrl
  38. 38.↵
    1. Nutting PA,
    2. Beasley JW,
    3. Werner JW
    . Practice-based research networks answer primary care questions. JAMA 1999;281:686–8.
    OpenUrlCrossRefPubMedWeb of Science
Back to top

In this issue

Print
Download PDF
Article Alerts
Email Article
Citation Tools

Jump to section

Keywords