Caregivers of transplant patients are essential when a patient is going through the transplant process. The support caregivers provide to transplant patients varies from assistance with transportation to and from the transplant center, support with activities of daily-living during post-transplant recovery, assistance with medications, and the much needed emotional support. The stress and emotional burden experienced by caregivers often goes untreated and emotional support specific for caregivers of transplant patients can be difficult to find. A medical hospitality house (HH) exclusively for transplant patients and their families developed a support program to address the unmet emotional needs of transplant caregivers. This program provides the needed support to transplant caregivers within the walls of the HH as well as through outlets outside of the HH, including an online support group (SG) solely for solid-organ transplant caregivers. The online support group’s purpose is to provide a safe space for transplant caregivers to openly dialogue about their role in the transplant process with others who are going through similar experiences.
The SG is a private group through the social media outlet Facebook. It is managed and monitored by a licensed social worker (LSW). The LSW approves all incoming members to ensure all are transplant caregivers and appropriate for the SG. SG members are not required to have stayed at the HH to be accepted into the group. The LSW posts a topic for discussion once a week along with a support resource relevant to the week’s discussion topic. All members are encouraged to provide their own comments, reply to other member’s comments, or ask questions.
The SG is comprised of 87 solid-organ transplant caregivers spanning across 24 US states and 2,300 miles. Group members were surveyed on variables such as comfort level in sharing opinions or questions, perceived level of support by other members, helpfulness of the resources shared by the LSW, and how the SG impacts their stress and emotional health. Forty-two surveys were returned.
Approximately 40% of respondents reported high to extreme levels of stress due to their role as a transplant caregiver while less than 20% reported little to no stress. Findings also indicated that over 85% of respondents felt comfortable engaging in discussion and asking questions in the SG, over 90% felt supported by other caregivers in the SG, and almost 93% reported a reduction in stress due to participating in the SG. Many members also reported that they had little to no support outside of the SG, specifically pertaining to their emotional health related to their role as a transplant caregiver.
Future studies are needed to understand how the emotional health of the transplant caregiver impacts the physical and emotional health of the transplant patient.