Patient-Centered mHealth Living Donor Transplant Education Program for African Americans: Development and Analysis

Background There is a critical need to expand the pool of available kidneys for African Americans who are on the transplant wait-list due to the disproportionally lower availability of deceased donor kidneys compared with other races/ethnic groups. Encouraging living donation is one method to fill this need. Incorporating mHealth strategies may be a way to deliver educational and supportive services to African American transplant-eligible patients and improve reach to those living in remote areas or unable to attend traditional group-session-based programs. Before program development, it is essential to perform formative research with target populations to determine acceptability and cultivate a patient-centered and culturally relevant approach to be used for program development. Objective The objectives of this study were to investigate African American kidney transplant recipients’ and kidney donors’/potential donors’ attitudes and perceptions toward mobile technology and its viability in an mHealth program aimed at educating patients about the process of living kidney donation. Methods Using frameworks from the technology acceptance model and self-determination theory, 9 focus groups (n=57) were administered to African Americans at a southeastern medical center, which included deceased/living donor kidney recipients and living donors/potential donors. After a demonstration of a tablet-based video education session and explanation of a group-based videoconferencing session, focus groups examined members’ perceptions about how educational messages should be presented on topics pertaining to the process of living kidney donation and the transplantation. Questionnaires were administered on technology use and perceptions of the potential program communication platform. Transcripts were coded and themes were examined using NVivo 10 software. Results Qualitative findings found 5 major themes common among all participants. These included the following: (1) strong support for mobile technology use; (2) different media formats were preferred; (3) willingness to engage in video chats, but face-to-face interaction sometimes preferred; (4) media needs to be user friendly; (5) high prevalence of technology access. Our results show that recipients were willing to spend more time on education than the donors group, they wanted to build conversation skills to approach others, and preferred getting information from many sources, whereas the donor group wanted to hear from other living donors. The questionnaires revealed 85% or more of the sample scored 4+ on a 5-point Likert scale, which indicates high degree of interest to use the proposed program, belief that other mHealth technologies would help with adherence to medical regimens, and doctors would make regimen adjustments quicker. In addition, high utilization of mobile technology was reported; 71.9% of the participants had a mobile phone and 43.9% had a tablet. Conclusions Our study supports the use of an mHealth education platform for African Americans to learn about living donation. However, potential recipients and potential donors have differing needs, and therefore, programs should be tailored to each target audience.

[1]  R. Wolfe,et al.  Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant. , 1999, The New England journal of medicine.

[2]  Andrew K. Shenton Strategies for ensuring trustworthiness in qualitative research projects , 2004, Educ. Inf..

[3]  Elinor Ochs,et al.  Co-Construction: An Introduction , 1995 .

[4]  E. Deci,et al.  A meta-analytic review of experiments examining the effects of extrinsic rewards on intrinsic motivation. , 1999, Psychological bulletin.

[5]  Richard M. Ryan,et al.  Motivational Interviewing and Self–Determination Theory , 2005 .

[6]  Kathryn Coyle,et al.  Home telehealth for chronic disease management: A systematic review and an analysis of economic evaluations , 2009, International Journal of Technology Assessment in Health Care.

[7]  A. Waterman,et al.  Protocol of a cluster randomized trial of an educational intervention to increase knowledge of living donor kidney transplant among potential transplant candidates , 2013, BMC Nephrology.

[8]  A. Laupacis,et al.  A study of the quality of life and cost-utility of renal transplantation. , 1996, Kidney international.

[9]  R. Howard,et al.  A randomized trial of a home-based educational approach to increase live donor kidney transplantation: effects in blacks and whites. , 2008, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[10]  E. Deci,et al.  Nature and autonomy: An organizational view of social and neurobiological aspects of self-regulation in behavior and development , 1997, Development and Psychopathology.

[11]  S. Rubin,et al.  Effectiveness of mHealth Behavior Change Communication Interventions in Developing Countries: A Systematic Review of the Literature , 2012, Journal of health communication.

[12]  A. Armstrong,et al.  Effects of video-based, online education on behavioral and knowledge outcomes in sunscreen use: a randomized controlled trial. , 2011, Patient education and counseling.

[13]  Rebecca A. Rock,et al.  Mobile Health Medication Adherence and Blood Pressure Control in Renal Transplant Recipients: A Proof-of-Concept Randomized Controlled Trial , 2013, JMIR research protocols.

[14]  Laura L. Ellingson,et al.  Engaging Crystallization in Qualitative Research: An Introduction , 2008 .

[15]  E. Deci,et al.  Self-Determination Theory Applied to Health Contexts , 2012, Perspectives on psychological science : a journal of the Association for Psychological Science.

[16]  Robert Ploutz-Snyder,et al.  A comparison of diabetes education administered through telemedicine versus in person. , 2000, Diabetes care.

[17]  E. Deci,et al.  Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. , 2000, The American psychologist.

[18]  Frank Treiber,et al.  Hispanic Migrant Farm Workers' Attitudes Toward Mobile Phone-Based Telehealth for Management of Chronic Health Conditions , 2013, Journal of medical Internet research.

[19]  N. Leech,et al.  A Qualitative Framework for Collecting and Analyzing Data in Focus Group Research , 2009 .

[20]  Marci K Campbell,et al.  Pounds Off Digitally study: a randomized podcasting weight-loss intervention. , 2009, American journal of preventive medicine.

[21]  Tanjala S. Purnell,et al.  Addressing racial and ethnic disparities in live donor kidney transplantation: priorities for research and intervention. , 2010, Seminars in nephrology.

[22]  Alfred Bork,et al.  Multimedia in Learning , 2001 .

[23]  A. Waterman,et al.  Living Donation Decision Making: Recipients' Concerns and Educational Needs , 2006, Progress in transplantation.

[24]  R. Howard,et al.  Increasing Live Donor Kidney Transplantation: A Randomized Controlled Trial of a Home‐Based Educational Intervention , 2007, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[25]  P. Kidd,et al.  Getting the Focus and the Group: Enhancing Analytical Rigor in Focus Group Research , 2000, Qualitative health research.

[26]  A. Bandura Self-Efficacy: The Exercise of Control , 1997, Journal of Cognitive Psychotherapy.

[27]  K. Devers,et al.  Qualitative data analysis for health services research: developing taxonomy, themes, and theory. , 2007, Health services research.

[28]  Lisa A Marsch,et al.  Using findings in multimedia learning to inform technology-based behavioral health interventions , 2013, Translational behavioral medicine.

[29]  D. Manninen,et al.  Work disability, functional limitations, and the health status of kidney transplantation recipients posttransplant. , 1991, Clinical transplants.

[30]  Hsiu-Fang Hsieh,et al.  Three Approaches to Qualitative Content Analysis , 2005, Qualitative health research.

[31]  J. Klempnauer,et al.  Quality of Life in Adult Transplant Recipients More than 15 Years after Kidney Transplantation , 2006, Transplantation.

[32]  C. Young,et al.  Renal transplantation in black Americans. , 2000, The New England journal of medicine.

[33]  B. Hemmelgarn,et al.  Barriers to living kidney donation identified by eligible candidates with end-stage renal disease. , 2011, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[34]  R. Mayer,et al.  Nine Ways to Reduce Cognitive Load in Multimedia Learning , 2003 .

[35]  Martina Mueller,et al.  Patient Attitudes Toward Mobile Phone-Based Health Monitoring: Questionnaire Study Among Kidney Transplant Recipients , 2013, Journal of medical Internet research.

[36]  R. Jindal,et al.  Quality of life after kidney and pancreas transplantation: a review. , 2003, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[37]  Steve Wheeler,et al.  How smartphones are changing the face of mobile and participatory healthcare: an overview, with example from eCAALYX , 2011, Biomedical engineering online.

[38]  S. Mulgaonkar,et al.  Barriers to living donor kidney transplantation among black or older transplant candidates. , 2010, Clinical journal of the American Society of Nephrology : CJASN.