Use of a Facebook Support Group for Kidney Transplant Patients
by
,
Tenzin Yongye
1,
Maria Keller
1,2
Surjo Bandyopadhyay
1,
Ahmad Zaaroura
1,2,3 and
Liise K. Kayler
1,2,3,*1
Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY 14203, USA
2
Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, NY 14215, USA
3
Department of Surgery, University at Buffalo, Buffalo, NY 14215, USA
*
Author to whom correspondence should be addressed.
Transplantology 2024, 5(4), 246-257; https://doi.org/10.3390/transplantology5040024
Submission received: 11 July 2024
/
Revised: 11 September 2024
/
Accepted: 28 October 2024
/
Published: 30 October 2024
Abstract
:Background: Facebook groups have been used to foster social support of transplant patients. Examining the use and content strategies for generating member interactions within transplant-specific groups can inform how we leverage these groups to expand access to social support resources. This study characterizes the use of a closed Facebook group for kidney transplant patient support linked to a hospital in Buffalo, NY to identify the most engaging content. Methods: The sample consisted of 387 individuals (372 patients/family, eight transplant professionals, and seven community advocates) and the administrator. Content analysis was conducted of posts and comments made to the group. Descriptive measures of post content associated with interactions (reactions and comments) were computed. Results: Between 5/2020 and 5/2023, there were 484 posts with 8233 interactions (2793 comments, 5440 reactions). Half of the posts (n = 241) were made by the administrator, 166 (34%) by patients/family, 70 (14%) by community advocates, and 7 (1%) by transplant professionals. Content analysis revealed that post types with the most interactions were personal experiences, monthly transplant volume, and monthly new members added; the least interactions involved posts about holidays, observances, and information. Conclusions: The interaction metrics varied according to the content strategies used by members and provided insights into the types of content members interact with.
1. Introduction
Social support of transplant patients is thought to improve transplant access and outcomes [1]. Group sessions at transplant centers were a common approach prior to March 2020 to provide emotional and informational support. The COVID-19 pandemic created an urgent need for a remote approach. Online environments have offered opportunities to promote social support for transplant patients [2,3,4], kidney failure patients [5], live kidney donors [4], and their caregivers [4,6].
Facebook offers an interface that is readily used in daily life and is one of the most popular social networking sites worldwide. Such platforms provide opportunities to harness social support by allowing users to share information and interact with others [7]. Previous research of Facebook support groups for transplant patients has focused on general engagement metrics and satisfaction [3]. Less is known about how patients and family members use these groups and the content types that facilitate use. Understanding the content and interactions between transplant patients/family can inform our understanding of these groups and posting strategies to promote interaction.
Launched in May 2020, a closed Facebook support group was created by a transplant hospital in a northeastern US city. The online group was moderated by a healthcare-community advisory board (CAB) that invited potential users and posted content to provide information and foster the use of the group. Invitations were initially made via email to patients with email addresses on file, and medical professionals at the transplant center and local community advocates followed by a flyer handed out to patients and caregivers at evaluation visits. Although recruitment was directed toward patients at the transplant center, group membership was open to those with clear ties to Western New York or the transplant community. The CAB posted content as the administrator and monitored the group daily for member questions and to approve member posts. With 387 users at the time of data collection, the group was viable for exploration of user interactions.
This research aimed to explore the use of a closed Facebook support group for transplant patients linked to a hospital in a northeastern US city. In addition to analyzing the extent of use by each member type, this study sought to characterize user content and determine which content generated interactions by patients and family members. This study combined quantitative and qualitative methods to answer the following exploratory research questions:
What proportion of patient/family members created their own posts?
What was the nature of the post content and comments provided by users?
What post content yielded the most user interactions?
2. Materials and Methods
A qualitative descriptive design was used to explore how transplant patients and family members used a closed Facebook support group to identify the content strategies associated with higher user interactions. COREQ guidelines were followed in reporting the qualitative component of the research. The study was approved by ECMC and the University at Buffalo IRB (#00006992).
2.1. Setting
The transplant program provides kidney and pancreas transplantation and is located in a public safety-net hospital [8] in Buffalo, NY, USA. The clinician-researchers had previously established a community advisory board (CAB) to conceptualize and implement kidney transplant access, outcome programs, and resources with/for individuals with kidney failure. The CAB consisted of 2 kidney transplant recipients, 2 people on dialysis, 1 donor, 1 lay caregiver, 1 dialysis social worker, an anthropologist, and an expert in community-based participatory research. The project was pre-empted by the onset of the COVID-19 pandemic and closure of face-to-face support groups offered at the hospital. Upon request by the CAB, the transplant center established, in May 2020, a closed Facebook support group to support the emotional and informational needs of pre- and post- transplant patients. The CAB met on a bi-monthly basis to design the group, recruit members, and deliver appropriate content to the group. The page administrators were a transplant surgeon, a university-based medical writer, and an outreach coordinator. The page administrator frequently posted unique and CAB-generated content to the page to share information, facilitate engagement, and support patients before and after kidney transplantation.
2.2. Sample
The hospital-linked Facebook Transplant Support Group is a closed group established for the purpose of fostering social support throughout the kidney transplant process. The private setting allowed the group to be searchable by the public, but content could only be viewed by group members and could not be shared outside the group. Potential group members were prompted to answer screening questions and read the group rules prior to submitting their request to join. An administrator approved all incoming members. Inclusion criteria were belonging to one of the following groups: kidney transplant patients, caregivers, or supporters (including social network members, community advocates, and medical professionals). After being approved to join the group, members gained access to all group content and were able to make their own posts and comment and/or react to others’ posts. Administrators screened all member posts before going live and screened comments based on 76 trigger words. At the time of data collection, the group had 387 participants. Our sample consisted of individuals who interacted (posted, commented, reacted) on the group page between May 2020 and May 2023.
2.3. Data Collection
Data were manually collected retrospectively in December 2024 by a social science researcher for all posts and interactions on the group page between May 2020 to May 2023. Personal identifiers were masked to the research team. Data included content of posts published within the group, number of interactions (posts, comments, reactions), and membership type (transplant professional, patient/family, community advocate, or admin), and they were organized in Microsoft Excel (version 16) to examine how participants used the group and explore engagement related to content shared.
2.4. Analysis
Mixed methods were used to explore the use of the group by members and content related to interactions.
Qualitative content analysis was conducted to analyze the posts and member comments published to the group and identify themes. Researchers first independently reviewed the posts for familiarization and then reviewed the posts again to identify salient codes. These codes were then cross-referenced with previous thematic analyses of similar topics in order to use consistent terms [9,10]. Once codes were finalized, three coders (medical students, TY and SB, led by a social scientist with qualitative research expertise, MK) independently analyzed posts in a subsample to categorize them according to the identified codes. Coders then discussed and revised the coding of the posts until consensus was reached, and the codes were applied to all posts.
Additional coding was performed to identify subcodes of the posts. Each coder was assigned the role as a primary or secondary coder on a parent theme. The primary coder deductively identified subcodes, and consensus was reached by discussion between the primary and secondary coders.
Once the coding of the posts was complete, content analysis was used to analyze commenting themes within each post category. Two coders (TY and MK) independently analyzed 10% of comments within each post category. The coders then discussed and revised the comment codes until consensus was reached.
For both the analysis of the posts and comments, the lead author (L.K.) was actively involved in numerous discussions concerning the codes. Where coding consensus could not be reached, the determination was made by the lead author.
The total numerical count of posts was recorded, along with the total number of associated interactions (comments and reactions, such as likes). Descriptive statistics and comparisons related to the frequency of post types (sharing experience, COVID-19 information, inquiry), interactions (reactions and comments), source (transplant professional, community advocate, or patient/family member) were conducted to explore possible associations.
3. Results
Between May 2020 and May 2023, 387 unique users were added to the group, which consisted of 96% patients/family (372/387), 2% community advocates (7/387), and 2% transplant professionals (8/387). Almost one-third of members (127/387) were added during the first 6 months after group inception, followed by an average addition of 26 members every 6 months for the remaining study period (Figure 1).
There were 484 total posts with 2793 comments and 5440 reactions (i.e., likes, emojis, etc.) from members on the Facebook support group. Of the 484 posts, half were made by the administrators under the moniker “ECMC” (n = 241), 34% were made by patients/family (n = 166), 14% by community advocates (n = 70), and 1% by transplant professionals (n = 7). All community advocates (n = 7) posted at least once, one-quarter of transplant professionals (2/8) posted at least once, and 21% (76/370) of patients/family posted at least once. Of patient/family posts, almost half were made by a single person (35/76).
3.1. Content Analysis of Posts
Posts published to the Facebook group’s wall represented the following seven categories of post types: information, welcoming monthly new members, announcing monthly transplants, holidays and observances, personal experience sharing, inquiries, and expressing good wishes or emotion (Table 1).
Combining posts made by the administrators, transplant professionals, and community advocates, information posts were the most observed, followed by welcoming new members and announcing monthly center transplants. In patient/family members alone, personal experience posts were the most common, followed by good wishes and other information posts.
Personal experience posts received the greatest number of interactions (median 34, IQR 38), followed by monthly center transplants (median 31, IQR 40), monthly new members (median 19, IQR 12), good wishes (median 14, IQR 12), inquiries (median 12, IQR 14); holidays and observances (median 9, IQR 16), and information, (median 6, IQR 8) which had the least engagement (Table 2).
3.2. Content Analysis of Comments
Comments related to the same content categories as posts, including personal experience sharing (“Happy Kidneyversary!!!”), welcoming monthly new members (“Hi and welcome!”), and inquiries (“Thanks all, kinda what I expected [about the initial KTX evaluation appointment]”) (Table 3).
4. Discussion
This study aimed to investigate how kidney transplant patients and family members used a Facebook support group linked to a hospital and moderated by a community advisory board specifically to explore content related to interactivity on the site. This study demonstrated active engagement by all member groups, patients/family, community advocates, and transplant professionals, and it contributes to the knowledge on posting strategies and member activity that may promote interaction within Facebook transplant support groups. Although the study did not assess outcomes, transplant-focused researchers suggest that “investing research and medical resources into integrating social support networks into the care of patients will yield positive outcomes” [11].
The group attracted a total of 370 kidney transplant patients and family members over a 3-year period. New memberships were highest in the first 6 months, most likely due to the initial round of invitations. Membership enrollment was steady over each subsequent 6-month period of the study. This can be explained by continued invitations in the clinic by the transplant social worker.
The CAB-driven administrator made half of the total posts, followed by around one-third of posts made by patients and transplant professionals together, and 14% by community advocates. These findings indicate the importance of administrator or moderator postings for group engagement, as seen in other research [12], and it also is the first study to indicate community advocate interest and participation in providing online support alongside providers.
Although patients and family members only made 34% of the total posts during the observation period, their posts received over two-thirds of the total comments made to the group (1876/2793). These findings suggest the potential for Facebook groups to promote interactions, either by individuals posting or commenting. Members who commented on patient and family member posts shared an array of knowledge, personal experiences, and expressions of support (i.e., welcome, congratulations, and good wishes). This may indicate the ability of Facebook groups to elicit the exchange of knowledge and mutual support in a similar way as face-to-face support groups [13].
The study found that the majority of posts exhibited information; however, information garnered the least interactions. The posts that generated the most interactions were personal experience, monthly transplant volume and welcoming new members, good wishes, and inquiries. Other research has similarly found that supportive or positive posts are more often “liked” than informative posts that lacked any encouraging messages [14].
Personal experience-based posts received the most comments, likes, and emojis from group members, specifically receiving the most comments. Most of these posts were from patients and were generally self-disclosure disclosures about the timeliness of transplant access, how long their transplants were lasting, and the care they received by medical professionals. The high interactivity suggests that group members respond the most to posts from their peers that share their experience. Previous investigations suggest that this reciprocity and sharing of knowledge and experiences can help foster friendships and promote positive health behaviors in persons who engage in health-related, web-based, peer-to-peer support [15].
Unexpectedly, the transplant center monthly volume posts received the next highest number of interactions, largely reactions rather than comments. Comments generally centered around congratulating the recipients and stating how long the commenters transplant has lasted, statements of receiving good transplant care, and the waiting time they experienced to get a kidney transplant. Previous research suggests that patients awaiting kidney transplants may gain a sense of hope from the shared journeys and successes of other kidney patients [16]. Therefore, Facebook posts and comments about transplant volume and positive outcomes may demonstrate the possibility of receiving a transplant and inspire optimism and hope, especially for patients on dialysis, who often experience social and emotional factors that contribute to a poorer quality of life.
The posts of the monthly number of new members received the third highest number of interactions, generating some social activity. This post did not provide members’ names, though some members identified themselves in the comments. Comments were generally statements welcoming the new members to the group. A transplant is ultimately a social activity that requires support from within the community, including virtual options [17]. It is notable that simple posts of welcoming members can generate social activity with little effort.
The posts of good wishes received the fourth highest number of interactions. Most of these posts were from patients and were generally expressions of emotional support and encouragement. Comments were generally of gratitude and the return of good wishes, which may demonstrate an environment of interactive support within this Facebook group. Sharing good wishes may indicate group members’ motivation to create a sense of belonging within the group by reciprocating their sharing of personal experiences. Others have noted that online efforts meant to achieve specific aims, such as fundraising campaigns, can translate into encouragement, as when supporters post photos of themselves wearing campaign T-shirts and share information about the patient’s search for a living donor [17]. Our findings and other research indicate that the creation of a virtual environment where a sense of belonging within the group is fostered by the group members themselves [18]. These findings reiterate both the transplant center’s intent to create an inclusive online support group and the potential to accomplish this with kidney patients, family, and transplant professionals using Facebook.
Inquiry had the fifth highest number of interactions. Members requested information predominantly about access to COVID vaccines and treatments but also a variety of other topics. COVID information may have been valued at the time, since transplant recipients were particularly affected by social distancing measures, which led to increased patient stress and loneliness [19]. Moreover, disruptions in communication with healthcare providers and the risk of COVID-19 exposure led to increased stress among patients [20]. Previous content analyses of support groups in other areas of health have shown that members tend to seek more informational support from groups established by professionals or from geography-specific support groups because the collective knowledge of locally available services, resources, and programs among members [21]. The moderators tended not to answer questions from members and waited for other group members and community advocates to provide their unique insight into questions raised. Community advocates often validated or corrected posted information.
Informational posts and celebrating holidays and observations received the lowest number of interactions. These posts were generally provided by moderators and community advocates. Many information posts centered on the availability of COVID-19 vaccines and where to obtain them in response to inquiries by. Other information included local resources, kidney-related events, and other information. In an analysis of Facebook support groups for patients with Chronic Obstructive Pulmonary Disease (COPD) [22], it was found that informative posts were less likely to receive interactions than other post types. However, the value of these post types to members should not be discounted, as members may engage passively with the posts by viewing them but not seeing the need to react or comment [23]. Therefore, while the Facebook posts contributing information had low engagement, the posts may still have been beneficial and sought after by members. Prior research indicates that while patients want their social circle to know more about transplantation, patients did not want be the educators, feeling that such a tack can overburden them while trying to focus on processing information themselves [11].
Limitations
Our study has limitations. This study only included one closed private transplant Facebook group that posted content in English. Other private Facebook groups may result in different interaction and content strategies by patients. We do not know the sociodemographic characteristics of the group members, which may affect the generalizability of our findings. The linkage of the group to the hospital and the CAB’s presence may have affected the way the members used it. Specifically, concerns regarding privacy may have prevented members from contributing posts about the care they received at the center. The support group was implemented during periods of stay-at-home orders and local restrictions. It is unknown whether members would have joined or used the group to the same extent outside of the parameters of such extreme circumstances. Members may have leaned on live support groups instead. As a result of our study design, we lack information about patient impact (e.g., emotional support), extent of use, or satisfaction with the online content strategy. Clinical outcomes between patients who receive support through digital platforms versus in-person groups is an area of future study. We did not systematically capture patients who did not enroll in the program. This limits our ability to fully understand what types of patients are willing to use the program. The communication strategy we employed in this study involves a healthcare community advisory board creating the posts. This may not reflect usual clinic practice in some settings. We believe the posts could be predominantly introduced by community advocates, broadening the feasibility of this approach. Importantly, internet use has increased steadily over the past decade, with the greatest gains in at-risk patient groups. Further study of digital social support approaches is needed that provide care to more diverse patient populations to confirm feasibility and ensure that the digital approach will mitigate, rather than worsen, existing disparities. The non-grounded theory approach did not account for the wide range of topics that could potentially be discussed within transplant Facebook Groups. The use of theory-based text mining or machine learning algorithms may help identify the broad array of communication patterns that may occur on group walls.
5. Conclusions
This study describes the activity within a private Facebook support group for kidney transplant candidates, recipients, and their families and the type of post content that supports member interaction. This study demonstrates active engagement among all three groups, patients/family, community advocates, and transplant professionals, as well as contributes to the knowledge on posting strategies and member activity that may promote interaction within Facebook transplant support groups. With the importance of perceived social support in transplant access and outcomes, attempts to promote feelings of social support from providers and promote interactions between patients are important. For transplant programs, attempts to promote social support for patients are limited by the small patient numbers, geographic distances, and the medical routines of most kidney failure patients. Negative interactions are often reported at dialysis centers, and positive interactions with others facing the same problem are difficult, if not impossible. An online support group may overcome the geographic barriers of traditional face-to-face support groups.
Author Contributions
Conceptualization, L.K.K., T.Y., M.K. and S.B.; methodology, L.K.K., T.Y., M.K. and S.B.; software, T.Y., M.K. and S.B.; validation, L.K.K.; formal analysis, L.K.K., T.Y., M.K. and S.B.; investigation, L.K.K., T.Y., M.K. and S.B.; data curation, T.Y., M.K. and S.B.; writing—original draft preparation, L.K.K., T.Y., M.K. and S.B.; writing—review and editing, T.Y., M.K., S.B., A.Z. and L.K.K. All authors; supervision, L.K.K.; All authors have read and agreed to the published version of the manuscript.
Funding
This research received no external funding.
Institutional Review Board Statement
The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Institutional Review Board (or Ethics Committee) of The University at Buffalo, State University of New York (protocol code 00007695, 25 September 2023).
Informed Consent Statement
Patient consent was waived. This research involved minimal risk to participants. For this study, we did not download personal profile information. In addition, participants completed an online acknowledgement form informing them that their data will be reviewed for quality improvement, and that all information will be reported without names/identifying information.
Data Availability Statement
The qualitative data used and analyzed in this study are not publicly available, because the data contain personal and potentially identifying information. Quantitative The data are available from the corresponding author upon reasonable request.
Acknowledgments
We thank Kidney Health Together for their contribution to this project.
Conflicts of Interest
The authors declare no conflicts of interest.
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Figure 1.
Enrollment by member type.
Table 1.
Coding framework used during data collection *.
| Content Type | Description |
|---|---|
| Information: | Post informs about COVID-19, including:
|
| COVID-19 | Post announces an event, including online and real-world support activities. Comments included reactions of “nice” or “cool”, technical inquiries about accessing or sharing the online event, and support for the educator leading the event. |
| Event | Post provides information and links to local community resources, such as food assistance and living donor outreach services. Comments thank the poster for the information and reactions of “wonderful” to the information. |
| Local resource | Post provides the following:
|
| Other | Post announces the monthly number of new members. Comments welcomed new members and shared transplant longevity. |
| Welcoming new members | Post announces the monthly number of center transplants. Comments offered congratulations for receiving a transplant and recipients self-identified as one of the new monthly transplants. |
| Announcing transplantations | Post announces a holiday or observance, most of which were kidney related. Comments shared “happy holiday” wishes, stressed the importance of the post topic, and shared related personal experiences. |
| Holidays and observances | Post asks users a question, including rhetorical questions and polls, about the following:
|
| Inquiry | Post contains personal information, including the following:
|
| Personal experience sharing | Post provides emotional support and encouragement, including the following:
|
| Good wishes, or expressing emotion or affection | Post informs about COVID-19, including the following:
|
Table 2.
Engagement by post type and member group.
| Overall Post Interactions | ||||||||
|---|---|---|---|---|---|---|---|---|
| Engagement (Comments + Reactions) | Comments per Post | Reactions per Post | ||||||
| Content Type | Total Posts | Posts by Admin | Posts by Patients | Posts by Transplant Professionals | Posts by Community Advocates | Median (IQR) | Median (IQR) | Median (IQR) |
| Personal experience sharing | 70 | 4 | 63 | 0 | 3 | 35 (40) | 10 (17) | 26 (27) |
| Announcing monthly transplants | 28 | 28 | 0 | 0 | 0 | 31 (15) | 4 (4) | 27 (13) |
| Welcoming monthly new members | 27 | 27 | 0 | 0 | 0 | 19 (12) | 6 (6) | 13 (8) |
| Good wishes | 37 | 2 | 32 | 0 | 3 | 13 (12) | 2 (7) | 8 (9) |
| Inquiry | 60 | 11 | 48 | 0 | 1 | 12 (14) | 9 (12) | 3 (2) |
| Holidays and observances | 45 | 31 | 3 | 3 | 8 | 9 (12) | 0 (3) | 8 (11) |
| Information | 216 | 137 | 20 | 4 | 55 | 6 (8) | 1 (2) | 5 (7) |
| Local resources | 6 | 3 | 0 | 0 | 3 | 6 (17) | 2 (5) | 5 (16) |
| COVID-19 | 37 | 20 | 6 | 2 | 9 | 6 (8) | 1 (4) | 4 (7) |
| Other | 79 | 42 | 12 | 1 | 24 | 7 (7) | 0 (2) | 6 (7) |
| Event | 94 | 72 | 2 | 1 | 19 | 5 (7) | 0 (2) | 5 (5) |
| Total | 484 | 241 | 166 | 7 | 70 | 10 (17) | 2 (7) | 7 (12) |
Table 3.
Content types, illustrative posts, and comments.
| COVID-19 Information | Comments: “Already got [the vaccine] last Monday!” (Patient, August 2021); “Thank you for sharing!” (Patient, August 2021); “Are [donors] in a higher risk category?” (Patient, December 2020) |
| Announcing COVID-19 testing services “[Local church] COVID-19 Testing.” (Community Advocate, July 2020, shared post, and graphic) Announcing center-specific care, such as changes in service and vaccine availability “Update on COVID vaccine boosters for transplant patients. ECMC now scheduling for booster shots. Letter in the mail sent out to every transplant patient.” (Admin, August 2021, text post) Shared COVID-19 educational content, including news articles, webinars, and shared posts “Coronavirus Update: FDA authorizes additional vaccine dose for certain immunocompromised individuals” (Transplant Professional, August 2021, shared post) Educational webinar sign-up announcements “AAKP HealthLine Webinar: Kidney Patients and the COVID-19 Vaccine.” (Community Advocate, January 2021, webinar link) COVID vaccine clinical trial or other study opportunities “Look into the Novavax trial if you want a COVID vaccine but don’t think you’ll get it soon enough.” (Admin, January 2021, article link and video link) | |
| Event Information | Comments: “Yes!! I have been waiting for this information.” (Patient, July 2021); “Is it possible to watch the zoom meeting if you were unable to attend?” (Patient, July 2021); “Thank you for everything you are doing to help spread the word” (Patient, May 2021) |
| In-person event or webinar announcement “Life with Kidney Tx: what to expect during the first 100 days- Facebook live and webinar.” (Community Advocate, September 2020, link to upcoming Facebook live and webinar) Transplant center support group announcement “Kidney Disease and Transplant Support Group: Getting insurance to pay for services...” (Admin, October 2021, link to upcoming Zoom event) | |
| Local Resource Information | Comments: “Wonderful news!” (Community Advocate, February 2021); “Wow I wish I had known [about the Kidney Connection website] sooner.” (Patient, January 2021) |
| Food assistance “Yesterday was [the] opening of the Healthy Living Pantry for the dialysis patients and families of Western New York.” (Community Advocate, February 2021, text and photo) Living donor outreach services “The Kidney Connection was founded in 2006 when a complete stranger came to Buffalo to donate a kidney to someone after reading his story on a website. For those in need of a kidney transplant in our area you can visit www.kidneyconnection.org and submit your profile.” (Community Advocate, December 2020, text and link) | |
| Other Information | Comments: “Thanks for sharing this story! [This donor] is an amazing person & so is [her recipient]” (Patient, February 2021) |
| Article, video, or podcast on general health topics and transplant information “The holiday season is here! That means celebrating with favorite foods. This week, we will share meat safety tips for the holidays- and year-round.” (Admin, December 2023, text and article link) News article about a kidney donation experience “He thought getting a new kidney in the pandemic would be impossible. His son’s coach stepped up.” (Community Advocate, January 2022, article link) Resources, not local “You can live well with kidney disease. Take our free online class to learn how” (Community Advocate, November 2020, link) Recap of recent community event “Big Congratulations to Team Buffalo in this year’s Transplant Games of America for winning more than 25 medals.” (Admin, August 2022, text and photos) | |
| Welcoming New Members | Comments: “Hi and welcome!” (Patient, May 2022); “hi I’m post transplant just over 2 yrs everything is going ok” (Patient, August 2020) |
| “Help us say hello to our new members from February! If you’re new, feel free to introduce yourself.” (Admin, March 2022, text) | |
| Announcing Transplants | Comments: “Congratulations! Second chances at a beautiful life” (Community Advocate, December 2022); “I am one of the recipients!” (Patient, August 2023) |
| “Nineteen life-saving transplants were performed at ECMC in October. Thank you to our donors and their families for their selfless gift of life.” (Admin, November 2022, text) | |
| Holidays & Observances | Comments: “Today is a great day to honor the amazing gifts of living donors!” (Community Advocate, April 2022); On Transplant Nurses Week: “My transplant nurses were amazing!” (Patient, April 2022) |
| “Today is Donor Remembrance Day. We honor and celebrate all life-saving organ, eye, and tissue donors in a special way today.” (Admin, April 2021, shared graphic) | |
| Inquiry | Comments: “Yep had [mild rejection] the 2nd week of transplant. Steroids fixed the problem” (Patient, June 2022); “Hang in there [regarding easy bruising” (Patient, July 2022); “Thanks all, kinda what I expected [about the initial KTX evaluation appointment] (Patient, May 2022) |
| COVID-19, including vaccine eligibility, vaccine concerns, and side effects “Does anyone know if we transplant patients need a 3rd COVID-19 vaccine for additional immunity?” (Patient, June 2021, text) Pre-transplant topics, including donation, dialysis, evaluation, and listing “What should I expect at initial ktx eval appt?” (Patient, May 2022, text) Post-transplant topics, including medications and other related health concerns “Has anyone taking tacrolimus experienced hair loss? If so did it eventually stop or does hair continue to shed and cause baldness?” (Patient, May 2021, text) Group engagement and feedback, including rhetorical questions to prompt member engagement, support, and requests for feedback for group improvement “Mental health check—post one of the colored emojis that corresponds with how you’re feeling.” (Admin, November 2020, text) | |
| Personal Experience Sharing | Comments: “Happy Kidneyversary!!!” (Patient, April 2021); “Best wishes for a speedy recovery!” (Patient, April 2022); “Hang in there! My theme song was Tom Petty[‘s] song The Waiting, is the hardest part” (July 2022) |
| Declaration/celebration of days post-transplant “Three year kidneyversery today. Thanks to my beautiful wife (my donor)” (Patient, April 2021, text) Declaration of waiting for a transplant “I received my call on Friday afternoon that I am on the transplant list but now the waiting part starts...” (Patient, July 2022, text) Declaration of received transplant/donor “My new life has just begun. Recovering in the ICU following my kidney transplant.” (Patient, December 2022, text) Sharing post-transplant lifestyle improvements or health achievements “I walked 10,000 steps today! First time since my transplant!” (Patient, April 2021, text) Sharing concerns regarding health “My GFR is still getting worse each month and I am nervous. I am asking for prayers and putting it in God’s hands!” (Patient, November 2021, text) Self-disclosure of personal medical care received “Got appointment to go to ECMC tomorrow for EVUSHELD. It is a 2 Injection process. It will be worth it to stay healthy!!!” (Patient, January 2022, text) | |
| Good Wishes | Comments: “Awesome! Thank you for coordinating this [food drive]” (Community Advocate, November 2021); “Thanks u too! [enjoy the sunshine]” (Patient, March 2021) |
| Offered thanks for information provided or contribution to a community event “Thanks to all who supported the food drive for thanksgiving dinners to dialysis patients. 62 patients were provided turkeys in the surrounding 8 counties.” (Community Advocate, November 2021, text with photo) Expressed gratitude for the support of the group, the donation experience, and the transplant staff “I was ecstatic to be able to donate to my husband in December of 2015 and grateful for each day.” (Family, February 2021, text) Wishes of a good day or happy holiday “Good morning. Hope you guys can enjoy the sunshine.” (Patient, March 2021, text) | |
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MDPI and ACS Style
Yongye, T.; Keller, M.; Bandyopadhyay, S.; Zaaroura, A.; Kayler, L.K. Use of a Facebook Support Group for Kidney Transplant Patients. Transplantology 2024, 5, 246-257. https://doi.org/10.3390/transplantology5040024
AMA Style
Yongye T, Keller M, Bandyopadhyay S, Zaaroura A, Kayler LK. Use of a Facebook Support Group for Kidney Transplant Patients. Transplantology. 2024; 5(4):246-257. https://doi.org/10.3390/transplantology5040024
Chicago/Turabian StyleYongye, Tenzin, Maria Keller, Surjo Bandyopadhyay, Ahmad Zaaroura, and Liise K. Kayler. 2024. "Use of a Facebook Support Group for Kidney Transplant Patients" Transplantology 5, no. 4: 246-257. https://doi.org/10.3390/transplantology5040024
APA StyleYongye, T., Keller, M., Bandyopadhyay, S., Zaaroura, A., & Kayler, L. K. (2024). Use of a Facebook Support Group for Kidney Transplant Patients. Transplantology, 5(4), 246-257. https://doi.org/10.3390/transplantology5040024