Study Shows How Social Media Sites Help Transplant Patients
Researchers in FAU’s Christine E. Lynn College of Nursing conducted a unique study to explore how transplant recipients use social media sites for support and healing.
Social media sites are increasingly popular as alternative sources of information for an array of health-related issues as well as support groups. Prior studies show that 1 in 4 adults have searched online to find others who have the same medical condition, especially chronic conditions. Using qualitative research and data, researchers in the Christine E. Lynn College of Nursing at Florida Atlantic University conducted a unique study to explore how transplant recipients use these sites for support and healing. Results from the study, published in the journal Computers, Informatics, Nursing, provide an intimate glimpse into the psyche of transplant recipients worldwide, whose lives have forever been altered by this experience.
Traditional face-to-face support groups for transplant recipients are usually affiliated with and/or located at major health care organizations that perform organ transplants. Because of their locations, these support groups are not always convenient and often place time constraints on transplant recipients. In addition, there is a lack of privacy in these settings and fear of negative feedback.
“Social support can have a profound influence on a transplant recipient’s overall psychological integration of this life changing event,” said Valarie S. Grumme, M.S.N, R.N., CCRN, co-author of the study and a graduate student in FAU’s Christine E. Lynn College of Nursing. “The Internet provides worldwide virtual contact and availability anytime and, if desired, with anonymity. Today, transplant recipients can use a diverse support network that includes transplant-related social media sites.”
For the study, Grumme and co-author Shirley C. Gordon, Ph.D., R.N., a professor in FAU’s Christine E. Lynn College of Nursing, examined individual online postings of a retrospective sample of members from an international transplant community website to better understand how they used the online discussion site. The researchers analyzed retrospective postings that emerged from two discussion threads: one thread regarding feelings about the donor and donor’s family, and another regarding the psychological and emotional problems post-transplant. Individual postings to the two threads were conducted over a 20-month period, and were captured as they existed on this open transplant community. All personal identifiers were removed prior to beginning the analysis.
Two major themes emerged from the data in this study: sharing overwhelming gratitude and finding sanctuary. Sharing overwhelming gratitude was expressed in emotional postings about feelings and letters to donor families. Finding sanctuary described the recipients’ perception of the online community as a safe and non-judgmental environment to discuss sensitive issues and feelings.
“Today is my second anniversary post-transplant. I am so grateful for the gift of life that I have been given by an anonymous donor family,” one recipient posted. “I was very close to death when I received their precious gift from their son. My thoughts and prayers goes out to them. Thank you my donor family.”
Recipients also found sanctuary from their postings as a way of finding an emotional shelter to safely share their feelings, discuss sensitive issues and experiences, find help and comfort, and to be heard. The researchers also described an interesting subtheme of finding sanctuary, such as “revealing intimate connections,” which was explained as “a profound new sense of shared feelings and identity with the donor.”
“I knew it came from a man but I knew nothing about him. I visualized a person and I got a very peaceful feeling, which I believe is from [the donor],” another recipient posted. “My outlook is different ... I don’t know if that is from my donor or from being so close to death as one can get and coming back.”
Postings on the site not only included textual messages, but also pictures of donors and recipients, visual memorials, artwork, poetry, music, and videos from transplant recipients, expressing what words could not describe.
To protect the confidentiality of both parties – recipients and donor families – guidelines from the United Network for Organ Sharing make the letter writing exchange process lengthy and cumbersome. As a result, participants in the study expressed frustrations over their experience when reaching out to donor families to thank them. Others chose not to reach out because they did not want to overwhelm the family, while others wondered why the families had not responded to their letters.
“The results of this study add to what is known about the unique psychological and emotional needs of persons who receive organ transplants,” said Gordon. “Social media support sites provide a window into the world of transplant recipients, offering the opportunity to discover what matters most to them and identify gaps in care related to those needs.”
Grumme and Gordon also point out the need for further policy review regarding communication between transplant recipients and donor families.
“Reading the deeply personal and emotional postings from this study evoked a strong emotional response in us, underscoring the need to move forward with continued research in this area,” said Grumme.
FAU’s College of Nursing is internationally known for its commitment to nursing as a discipline focused on nurturing the wholeness of persons and the environment through Caring. The College advances Caring knowledge through education, practice, research and scholarship to transform care locally, nationally and globally. Currently, the College of Nursing offers bachelor’s, master’s, DNP and Ph.D. degree programs with approximately 1,600 nursing students enrolled in its programs. For more information, visit www.nursing.fau.edu.