549
Views
9
CrossRef citations to date
0
Altmetric
ARTICLES

Engaging Patients With Sickle Cell Disease and Their Families in Disease Education, Research, and Community Awareness

, , , , , & show all
Pages 256-272 | Published online: 16 Jun 2011

REFERENCES

  • Chen , E. , Cole , S. , & Kato , P. ( 2004 ). A review of empirically supported psychosocial interventions for pain and adherence outcomes in sickle cell disease . Journal of Pediatric Psychology , 29 ( 3 ), 197 – 209 .
  • Fisher , L. , & Weihs , K. ( 2000 ). Can addressing family relationships improve outcomes in chronic disease? Journal of Family Practice , 49 ( 6 ), 561 – 566 .
  • Gilliss , C. L. , Lee , K. A. , Gutierrez , Y. , Taylor , D. , Beyene , Y. , Neuhaus , J. , & Murrell , N. ( 2001 ). Recruitment and retention of healthy minority women into community-based longitudinal research . Journal of Women's Health and Gender Based Medicine , 10 ( 1 ), 77 – 85 .
  • Glasgow , R. , Funnell , M. , Bonomi , A. , Davis , C. , Beckham , V. , & Wagner , E. ( 2002 ). Self-management aspects of the improving chronic illness care breakthrough series: Implementation with diabetes and heart failure teams . Annals of Behavioral Medicine , 24 ( 2 ), 80 – 87 .
  • Hinshaw , S. , Hoagwood , K. , Jensen , P. , Kratochvil , C. , Bickman , L. , Clarke , G. , …Vitiello , B. (2004). AACAP 2001 research forum: Challenges and recommendations regarding recruitment and retention of participants in research investigations. Journal of the American Academy of Child & Adolescent Psychiatry , 43(8), 1037–1045.
  • Holmes , A. P. , Hatch , J. , & Robinson , G. A. ( 1991 ). A lay educator approach to sickle cell disease education . Journal of National Black Nurses' Association , 5 , 26 – 36 .
  • Jones , F. , & Broome , M. ( 2001 ). Focus groups with African American adolescents: Enhancing recruitment and retention in intervention studies . Journal of Pediatric Nursing , 16 ( 2 ), 88 – 96 .
  • Kaslow , N. , Collins , M. , Loundy , M. , Brown , F. , Hollins , L. , & Eckman , J. ( 1997 ). Empirically validated family interventions for pediatric psychology: Sickle cell disease as an exemplar . Journal of Pediatric Psychology , 22 ( 2 ), 213 – 227 .
  • Lemanek , K. , Ranalli , M. , Green , K. , Biega , C. , & Lupia , C. ( 2003 ). Diseases of the blood: Sickle cell disease and hemophilia . Handbook of Pediatric Psychology , 321 – 340 .
  • Logan , D. , Radcliffe , J. , & Smith-Whitley , K. ( 2002 ). Parent factors and adolescent sickle cell disease: Associations with patterns of health service use . Journal of Pediatric Psychology , 27 ( 5 ), 475 – 484 .
  • Marlowe , K. , & Chicella , M. ( 2002 ). Treatment of sickle cell pain . Pharmacotherapy , 22 ( 4 ), 484 – 491 .
  • McCormick , A. , McKay , M. M. , Wilson , M. , McKinney , L. , Paikoff , R. , Bell , C. , …Scott , R. ( 2000 ). Involving families in an urban HIV preventive intervention: how community collaboration addresses barriers to participation . AIDS Eduation and Prevention , 12 ( 4 ), 299 – 307 .
  • Miranda , J. , Azocar , F. , Organista , K. C. , Munoz , R. F. , & Lieberman , A. ( 1996 ). Recruiting and retaining low-income Latinos in psychotherapy research . Journal of Consulting and Clinical Psychology , 64 ( 5 ), 868 – 874 .
  • Mitchell , M. J. , Lemanek , K. , Palermo , T. M. , Crosby , L. E. , Nichols , A. , & Powers , S. W. ( 2007 ). Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease . Clinical Pediatrics , 46 ( 4 ), 311 – 319 .
  • Modi , A. , Crosby , L. , Guilfoyle , S. , Lemanek , K. , & Mitchell , M. ( 2009 ). Barriers to adherence in children with sickle cell disease . Children's Health Care , 38 ( 2 ), 107 – 122 .
  • National Institutes of Health . ( 2002 ). The Management of sickle cell disease (NIH Publication No. 02-2117), , (4th ed.) . Washington , DC : National Institutes of Health .
  • Ramsey , B. ( 2006 ). Appropriate compensation of pediatric research participants: Thoughts from an Institute of Medicine committee report . Journal of Pediatrics , 149 ( 1S ), 15 – 19 .
  • Reiss , J. , Gibson , R. , & Walker , L. ( 2005 ). Health care transition: Youth, family, and provider perspectives . Pediatrics , 115 ( 1 ), 112 – 120 .
  • Schatz , J. ( 2004 ). Brief report: Academic attainment in children with sickle cell disease . Journal of Pediatric Psychology , 29 ( 8 ), 627 .
  • SPSS ( 2009 ). SPSS 17.0 for Windows. Chicago, IL: SPSS, Inc.
  • Treadwell , M. J. , McClough , L. , & Vichinsky , E. (2006). Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait. Journal of the National Medical Association , 98(5), 704–710.
  • Von Korff , M. , Glasgow , R. , & Sharpe , M. ( 2002 ). ABC of psychological medicine: Organizing care for chronic illness . British Medical Journal , 325 ( 7355 ), 92 .
  • Wagner , E. , Austin , B. , Davis , C. , Hindmarsh , M. , Schaefer , J. , & Bonomi , A. ( 2001 ). Improving chronic illness care: Translating evidence into action . Health Affairs , 20 ( 6 ), 64 .
  • Yancey , A. , Ortega , A. , & Kumanyika , S. ( 2006 ). Effective recruitment and retention of minority research participants . Annual Review of Public Health , 27 , 1 – 28 .

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.