Rick Levine, co-author of The ClueTrain Manifesto states “Authenticity, honesty, and personal voice underlie much of what’s successful on the Web.” I think the idea of bringing more detailed, authentic dialogue via social media could have a huge impact on organ donation registration.
Let’s think about how this could apply particularly for Hispanic and Mexican Americans. Below is a conceptual framework* I created to help understand organ donation among Hispanics. (by the way let’s make clear from the get go that “Hispanics” is a term that no where comes near to describing the heterogeneity of the millions of people who have a wide diversity of culture and heritage!)
Culture, Values, Knowledge and Behavior
My framework is consistent with the theory of reasoned action: the behavioral outcome of registering to be a donor is based on the behavior of holding a conversation with one’s family regarding donor intent. My model contains four domains: culture, values, knowledge and behaviors. Culture drives values and knowledge which in turn drive behavior.
I believe the domains of values and knowledge overlap each other. Research shows that values (emotional beliefs) among Hispanics affecting donor family conversations are:
- reluctance to talk about death,
- factors of respeto (e.g. respect for the integrity of the body post death),
- trust factors such as not trusting the medical establishment to use all effort possible to save one’s life if one is a registered donor, and
- mistrust that organs transplanted are distributed equitably to Hispanics.
It’s about trust
Increased knowledge can reduce misinformation regarding organ donation and increase awareness of how to enact one’s intent (such as how to register or how to approach a conversation with one’s family). Improved organ donation education could help dispel myths of body disfigurement and separation of hospital teams for patient survival and organ procurement. (See Morgan & Miller, 2002; Alvaro et al, 2005 & 2008; Salim et al, 2010).
Getting back to Social Media
How does this framework relate to using social media to educate about organ donation? Latin Americans favor high-context communications described by Breitkopf in 2009 as “rich in detail” with both physical and personal factors discussed. What more perfect way to do that kind of rich in detail than in highly open, authentic dialogue via social media? Social media provides a means to build trust and discussion on a topic that is not always easy to discuss. Social media also helps to build community and the virtual community can be a way to promote real-world community based activities. Finally, Alvaro et al in evaluating a donor campaign in 2006 concluded that just adding Spanish language is insufficient for success. Again – marriage of social media with culture, values, knowledge and family discussions is an excellent opportunity to improve Hispanic donor registration.
For starters, check out these sites with thoughts about Hispanics and Social Media.
Alvaro, E.M., Siegel, J.T., Turcotte, D., Lisha, N., Crano, A.D. (2008). Living kidney donation among Hispanics: a qualitative examination of barriers and opportunities. Progress in Transplantation, 18(4), 243-250.
Alvaro, E.M., Jones, S.P., Robles, A.S.M., Siegel, J.T. (2006). Hispanic Organ Donation: Impact of a Spanish-Language Organ Donation Campaign. Journal of the National Medical Association, 98(1), 28-35.
Alvaro, E.M., Jones, S.P., Robles, A.S.M., Siegel, J.T. (2005). Predictors of organ donation behavior among Hispanic Americans. Progress in Transplantation, 15(2), 149-156.
Breitkopf, C.R. (2009). Attitudes, beliefs and behaviors surrounding organ donation among Hispanic women. Current Opinion in Organ Transplantation, 14(2), 191-195.
Morgan, S.E., and Miller, J.K. (2002). Beyond the Organ Donor Card: The Effect of Knowledge, Attitudes, and Values on Willingness to Communicate About Organ Donation to Family Members. Health Communication, 14(1), 121-134.
Salim, A., Schulman, D., Ley, E.J., Berry, C., Navarro, S., & Chan, L.S. (2010). Contributing Factors for the Willingness to Donate Organs in the Hispanic American Population. Archives of Surgery, 145(7), 684-689.
*The starting point for my thought regarding a framework to understanding Hispanic organ donation behavior began with an organ donation model developed by Susan Morgan (2004, Journal of Social and Personal Relationships, 21(1), 112-124.). Morgan’s model is grounded in the theory of reasoned action (TRA) which postulates the most important determinant of behavior is behavioral intention. I was also motivated by a framework developed by Borrell to understand Hispanic racial identity and impact on health (2005, American Journal of Public Health, 95(3), 379-381.)