Living Kidney Donors and Their Family Caregivers: Developing an Evidence-Based Educational and Social Support Website

United Network for Organ Sharing. Web cite. http://www.webcitation.org/5vl9EmFSj. Accessed December 26, 2011.

Smedley BD Stith AY Nelson AR , eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: Institute of Medicine; 2003.

Childress JT Liverman CT , eds. Organ Donation: Opportunities for Action. Washington, DC: Institute of Medicine, The National Academies Press; 2006.

Centers for Disease Control. http://www.webcitation.org/5vl92dhG8. December 26, 2011.

Segev DL Gentry SE Montgomery RA . Association between waiting times for kidney transplantation and rates of live donation. Am J Transplant. 2007;7(10):2406–2413.

Boulware LE Meoni LA Fink NE . Preferences, knowledge, communication and patient-physician discussion of living kidney transplantation in African American families. Am J Transplant. 2005;5(6):1503–1512.

Waterman AD Stanley SD Covelli T Hazel E Hong BA Brennan DC . Living donation decision making: Recipients' concerns and educational needs. Prog Transplant. 2006;16(1):17–23.

Taylor L Nolan M Dudley-Brown S . Evidence on spouse responses to illness as a guide to understanding and studying spouse responses to living organ donation. Prog Transplant. 2006;16(2): 117–125.

Boulware LE Ratner LE Sosa JA Cooper LA LaVeist TA Powe NR . Determinants of willingness to donate living related and cadaveric organs: Identifying opportunities for intervention. Transplantation. 2002;73(10):1683–1691.

O'Connor AM Stacey D Entwistle V . Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2003;(2):CD001431.

Wu RC Delgado D Costigan J Maciver J Ross H . Pilot study of an Internet patient-physician communication tool for heart failure disease management. J Med Internet Res. 2005; 7(1):e8.

Moody EM Clemens KK Storsley L Waterman A Parikh CR Garg AX . Improving on-line information for potential living kidney donors. Kidney Int. 2007;71(10):1062–1070.

Morahan-Martin JM . How internet users find, evaluate, and use online health information: A cross-cultural review. Cyberpsychol Behav. 2004;7(5):497–510.

Gustafson DH McTavish FM Stengle W . Use and impact of eHealth system by low-income women with breast cancer. J Health Commun. 2005;10(suppl 1): 195–218.

Collins EG White-Williams C Jalowiec A . Spouse quality of life before and 1 year after heart transplantation. Crit Care Nurs Clin North Am. 2000;12(1):103–110.

Basch EM Thaler HT Shi W Yakren S Schrag D . Use of information resources by patients with cancer and their companions. Cancer. 2004;100(11):2476–2483.

Dew MA Goycoolea JM Harris RC . An Internet based intervention to improve psychosocial outcomes in heart transplant recipients and family caregivers: Development and evaluation. J Heart Lung Transplant. 2004;23(6):745–758.

Baker L Wagner TH Singer S Bundorf MK . Use of the Internet and e-mail for health care information: Results from a national survey. JAMA. 2003;289(18):2400–2406.

Kerr C Murray E Burns J . Applying user-generated quality criteria to develop Internet intervention for patients with heart disease. J Telemed Telecare. 2008;14(3):124–127.

Brennan PF Moore SM Bjornsdottir G Jones J Visovsky C Rogers M . HeartCare: An Internet-based information and support system for patient home recovery after coronary artery bypass graft (CABG) surgery. J Adv Nurs. 2001;35(5):699–708.

Taylor LA McMullen P . Living kidney organ donation: Experiences of spousal support of donors. J Clin Nurs. 2008; 17(2):232–241.

Eysenbach G Powell J Englesakis M Rizo C Stern A . Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. BMJ. 2004;328(7449): 1166.

Lennerling A Nyberg G . Written information for potential living kidney donors. Transpl Int. 2004;17(8):449–452.

Sanner MA . The donation process of living kidney donors. Nephrol Dial Transplant. 2005;20(8):1707–1713.

Walton-Moss B Boulware LE Cooper M Taylor L Dane K Nolan MT . Pilot study of living kidney donor decision-making and outcomes. Clin Transplant. 2007;21(1):86–93.

Barrera M Jr Glasgow RE McKay HG Boles SM Feil EG . Do internet-based support interventions change perception of social support? An experimental trial of approaches for supporting diabetes self-management. Am J Community Psychol. 2002;30(5):637–654.

Ybarra ML Suman M . Help seeking behavior and the Internet: A national survey. Int J Med Inform. 2006;75(1):29–41.

Ma C Warren J Phillips P Stanek J . Empowering patients with essential information and communication support in the context of diabetes. Int J Med Inform. 2006;75(8):577–596.

Mo PK Malik SH Coulson NS . Gender differences in computer-mediated communication: A systematic literature review of online health related support groups. Patient Educ Couns. 2009;75(1):16–24.

Lemire M Sicotte C Pare' G . Internet use and the logics of personal empowerment in health. Health Policy. 2008;88(1): 130–140.

Eysenbach G Wyatt J . Using the Internet for surveys and health research. J Med Internet Res. 2002;4(2):E13.

Nolan MT Kub J Hughes MT . Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliat Support Care. 2008;6(3):273–280.

Nolan MT Hughes M Narendra DP . When patients lack capacity: The roles that patients with terminal diagnosis would choose for their physicians and loved ones in making medical decisions. J Pain Symptom Manage. 2005;30(4):342–353.

Moody EM Clemens KK Storsley L Waterman A Parikh CR Garg AX . Improving on-line information for potential living kidney donors. Kidney Int. 2007;71(10):1062–1070.

Lorence DP Park H Fox S . Racial disparities in health information access: Resilience of the Digital Divide. J Med Syst. 2006;30(4):241–249.

Jackson LA Zhao Y Kolenic A 3rd Fitzgerald HE Harold R Von Eye A . Race, gender, and information technology use: The new digital divide. Cyberpsychol Behav. 2008;11(4):437–442.

Fox S Rainie L . How Internet users decide what information to use when they or their loved ones are sick. Vital decisions: A Pew Internet Health Report. Pew Internet and American Life Project. http://www.pewinternet.org/Reports/2002/Vital-Decisions-A-Pew-Internet-Health-Report/Summary-of-Findings.aspx. Accessed December 26, 2011.

Ingelfinger JR . Risks and benefits to the living donor. N Engl J Med. 2005;353(5):447–449.

Reimer J Rensing A Haasen C Philipp T Pietruck F Franke GH . The impact of living-related kidney transplantation on the donor's life. Transplantation. 2006;81(9):1268–1273.

Boulware LE Troll MU Wang NY Powe NR . Perceived transparency and fairness of the organ allocation system and willingness to donate organs: A national study. Am J Transplant. 2007;(7): 1778–1787.

Sarashon-Kahn J . The wisdom of patients: Health care meets online social media. California HealthCare Foundation. http://www.chcf.org/publications/2008/04/the-wisdom-of-patients-health-care-meets-online-social-media. 2008. Accessed December 26, 2011.

Barker KK . Electronic support groups, patient-consumers, and medicalization: The case of contested illness. J Health Soc Behav. 2008;49(1):20–36.

Cotton SR Gupta SS . Characteristics of online and offline health information seekers and factors that discriminate between them. Soc Sci Med. 2004;599:1795–1806.

Ahmed OH Sullivan SJ Schneiders AG McCrory P . iSupport: Do social networking sites have a role to play in concussion awareness? Disabil Rehabil. 2010;32(22):1877–1883.

Glasgow RE Boles SM McKay HG Feil EG Barrera M Jr. The D-Net diabetes self-management program: Long-term implementation, outcomes, and generalization results. Prev Med. 2003;36(4):410–419.

O'Connor AM Bennett CL Stacey D . Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2009;8(3):CD001431.

Rada R . Cancer patient-to-patient online discussion groups. In: Encyclopedia of Virtual Communication and Technologies. Hershey, PA: Idea Group Inc; 2006:18–21. http://www.igi-global.com/chapter/encyclopedia-virtual-communities-technologies/18038. Accessed March 14, 2012.

Daneker B Kimmel PL Ranich T Peterson RA . Depression and marital dissatisfaction in patients with end stage renal disease and their spouses. Am J Kidney Dis. 2001;38(4):839–846.

Emiroglu R Yagmurdur MC Karakayali H Moray G Arslan G . Results with living-donor kidney transplants from spouses: 14 years of experience at our center. Transplant Proc. 2002; 34(6):2060–2061.

Passik SD Kirsh KL . A pilot examination of the impact of cancer patients' fatigue on their spousal caregivers. Palliat Support Care. 2005;3(4):273–279.

Halm MA Bakas T . Factors associated with caregiver depressive symptoms, outcomes, and perceived physical health after coronary artery bypass surgery. J Cardiovasc Nurs. 2007;22(6):508–515.

Fox S . Digital divisions. Pew Internet & American Life Project. http://www.pewinternet.org/PPF/r/165/report_display.asp. Accessed December 26, 2011.

Fried TR Bradley EH O'Leary JR Byers AL . Unmet desire for caregiver-patient communication and increased caregiver burden. J Am Geriatr Soc. 2005;53(1):59–65.

Gracida C Espinoza R Cedillo U Cancino J . Kidney transplantation with living donors nine years of follow-up of 628 living donors. Transplant Proc. 2003;35(3):946–947.

Forkner-Dunn J . Internet-based patient self-care: The next generation of health care delivery. J Med Internet Res. 2003;5(2):e8.

Moen A Gregory J Brennan PF . Cross-cultural factors necessary to enable design of flexible consumer health informatics systems (CHIS). Int J Med Inform. 2007;76(suppl 1):S168–S173.

Scharer K . An internet discussion board for parents of mentally ill young children. J Child Adolesc Psychiatr Nurs. 2005;18(1): 17–25.

Ko S Rosson S . Teaching Online. A Practical Guide. 2nd ed. New York, NY: Taylor & Francis Group; 2008.

Hughes S Dennison CR . Progress in prevention: How we help patients seek information on the World Wide Web? An opportunity to improve the “net effect.” J Cardiovasc Nurs. 2008; 23(4):324–325.

Van Uden-Kraan CF Drossaert CH Taal E Seydel ER Van de Laar MA . Participation in online patient support groups endorses patients' empowerment. Patient Educ Couns. 2008; 74(1):61–69.

Nahm ES Resnick B DeGrezia M Brotemarkle R . Use of discussion boards in a theory-based health web site for older adults. Nurs Res. 2009;58(6):419–426.

Eisdorfer C Czaja SJ Loewenstein DA . The effect of a family therapy and technology-based intervention on caregiver depression. Gerontologist. 2003;43(4):521–531.

Nahm ES Resnick B Mills ME . Development and pilot-testing of the perceived health web site usability questionnaire (PHWSUQ) for older adults. Stud Health Technol Inform. 2006;122:38–43.

Einollahi B Taheri S Nemati E Abbaszadeh S Pourfarziani V Nourbala MH . Burden among caregivers of kidney transplant recipients and its associated factors. Saudi J Kidney Dis Transplant. 2009;20(1):30–34.

Gaiser TJ Shreiner AE . A Guide to Conducting Online Research. Los Angeles, CA: Sage Publications; 2009.

Dillman DA . Mail and Internet Surveys: The Tailored Design Method. New York, NY: John Wiley & Sons; 2000.

Abdolrasulnia M Collins BC Casebeer L . Using email reminders to engage physicians in an Internet-based CME Intervention. BMC Med Educ. 2004;4:17.

Kuhl EA Sears SF Conti JB . Internet-based behavioral change and psychosocial care for patients with cardiovascular disease: A review of cardiac disease-specific applications. Heart Lung. 2006;35(6):374–382.

Kind T Wallace J Moon RY . The digital divide: A comparison of online consumer health information for African-American and general audiences. J Natl Med Assoc. 2008;100(11): 1333–1340.

Im EO Chee W . An online forum as a qualitative research method: Practical issues. Nurs Res. 2006;55(4):267–273.

Walton-Moss BJ Taylor L Nolan MT . Ethical analysis of living organ donation. Prog Transplant. 2005;15(3):303–309.

Pequegnat W Rosser BR Bowen AM . Conducting internet-based HIV/STD prevention survey research: Considerations in design and evaluation. AIDS Behav. 2006;11(4):505–521.

Colvin J Chenoweth L Bold M Harding C . Caregivers of older adults: Advantages and disadvantages of Internet-based social support. Family Relations. 2004;53(1):49–57.

Resnick PJ Janney AW Buis LR Richardson CR . Adding an online community to an internet-mediated walking program. Part 2: Strategies for encouraging community participation. J Med Internet Res. 2010;12(4):e72.

Ramos JD Rai-Chaudhuri A Neill RW . International online discussion lists on chronic myelogenous leukemia. BMJ. 2004;328(7449):1177–1178.

Kerr C Murray E Stevenson F Gore C Nazareth I . Internet Interventions for long-term conditions: Patient and caregiver quality criteria. J Med Internet Res. 2006;8(3):e13.

Adderley-Kelly B Green PM . Strategies for successful conduct of research with low-income African American populations. Nurs Outlook. 2009;53(3):147–152.

Spooner T Rainie L . African-Americans and the Internet. Pew Internet & American Life Project. 2000. http://www.pewinternet.org. Accessed March 28, 2012.