Use of a virtual community as a psychosocial support system in pediatric transplantation

Abstract

Despite significant interest by pediatric transplant patients in meeting others who have undergone transplantation, geographic distances combined with their daily routines make this difficult. This mixed-method study describes the use of Zora, a Web-based virtual community designed to create a support system for these patients. The Zora software allows participants to create a graphical online virtual city with houses expressing their individuality and objects conveying their concerns and personal stories. Zora allows real-time chat between participants further facilitating communication. Twenty-two post-transplant patients used Zora over nine months. The median number of log ons per participant was 19.50 times (q1 = 5.25, q3 = 41.50), and each participant spent a median of 12.48 h (q1 = 2.13, q3 = 25.55) logged into the program. This represented a median of 18.27 min/wk (q1 = 6.88, q3 = 37.40) per participant. Users created a total of 3736 objects (median/participant = 12.5, q1 = 2.25, q3 = 30) and created 66 virtual houses (median/participant = 2.00, q1 = 1.00, q3 = 3.00). In addition, a total of 14,444 lines of chat were recorded (median/participant = 228.5, q1 = 30.00, q3 = 663.25), and a total 278 messages were sent between users (median/participant = 3.50, q1 = 0.25, q3 = 15.5). Qualitative data show the preliminary success of the project, as three major themes emerged: (i) increased sense of normalcy for the patients, (ii) enhanced sense of self and contribution to the community, and (iii) increased social network. There were no instances of harmful interactions in the virtual world. This study demonstrates the feasibility and safety of a virtual community as a potential psychosocial intervention for post-transplant adolescents.

Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals

“…The use of social media by patients for network support was identified in 13 articles. Examples of network support include “meeting other patients who had gone through similar experiences” [27], “a means to connect with others in similar situations” [15], and “fostering relationships based on shared attributes” [28]. …”

“…The effect enhanced subjective well-being was identified in 12 articles. Examples from the articles concerning enhanced subjective well-being are “increased optimism” [22], “increased acceptance of the illness” [23], “decrease anxiety” [26] and “increased sense of normalcy” [27]. …”

Family Support and Quality of Life of Children with Kidney Chronic Disease

“…There were no instances of harmful interactions in the virtual world. This study demonstrates the feasibility and safety of a virtual community as a potential psychosocial intervention for post-transplant adolescents (Bers et al, 2010).…”

Improving the Transition to Adult Care for Young People with Chronic Kidney Disease

“…Adolescents with kidney transplants or on dialysis participating in a pilot of Zora reported an increased sense of normalcy, enhanced self-esteem, and an expanded social network [63]. The web-based format is appealing where face-to-face meetings are impractical because of geography or timing.…”

“…A pioneering online PYD program called 'Zora' engages users in a three-dimensional virtual community with creation of personally meaningful virtual objects and narratives, real-time chat, and asynchronous postings [63][64][65]. Adolescents with kidney transplants or on dialysis participating in a pilot of Zora reported an increased sense of normalcy, enhanced self-esteem, and an expanded social network [63].…”