Hospitality houses (HH) exclusively for transplant patients and their families are a relatively new concept and their connection to medical outcomes is untested. One hospitality house serving multiple transplant centers has been operating for five years and hired an outside evaluator to conduct at 360° evaluation from the perspective of transplant patients, families, referral hospitals, volunteers and financial contributors with the research question: “What is the impact of HH experience on transplant patients/families?” An outside IRB approved the study design, including the protocols and consents for a convenience sample of 71 participants interviewed in the course of 9 focus groups and 15 key informant interviews. The data was coded according to 30 study variables. Key recurring themes that appeared to have consensus were identified and noted to have strong support across different groups.
The findings indicated an importance of the spontaneous and ongoing support of sharing lodging space with others going through similar experiences. This study affirmed that HH positively impacted both transplant patients/families physical and mental health, illustrating how a hospitality house can provide a way to strengthen the resilience of family members as they navigate the difficult territory of the transplant journey. Most participants (patients and caregivers) indicated that if the HH did not exist family members would not have been at the hospital bedside daily and patients indicated that the presence and support of family at the bedside providing encouragement was crucial to the patient’s health and recovery during the transplant process. It was also notable that transplant patients and family members consistently expressed an increased appreciation for the need for organ and tissue donation as a result of their experience at HH. Many became advocates encouraging friends and families to become organ donors or sought speaking engagements where they could encourage larger circles of people to become organ and tissue donors.
Future studies are needed to better understand the most effective approaches for increasing the mental health and physical resilience of caregivers pre- and post-transplant, and the short and long-term effects on patients and caregivers.
TD Charitable Foundation.