Grant: Travel Awards - Institute Community Support

Individuals with advanced lung disease constantly depend on oxygen. As their physical condition continues to deteriorate, their quality of life also declines. The last possible line of treatment is lung transplant surgery. In Canada, there is a lung transplant wait-list that individuals need to qualify for, and they often wait a significant period of time until suitable lungs become available. In order to qualify for the lung transplant wait-list, not only are transplant candidates required to relocate so that they are within 2 ½ hours of the hospital, they must also have a designated support person accompany them for the entire waiting period. Support persons usually consist of friends and family members. They are responsible for taking care of patients' daily activities, driving patients to appointments and physiotherapy training, relaying information to the healthcare team and supporting patients emotionally. While support persons play a major role in the wait-listing process, there is no current research documenting their experiences. A narrative study was conducted to better understand support persons' experiences of waiting for lung transplant. Support persons were recruited from a lung transplant program in Ontario. Two interviews were conducted with each participant about three to four weeks apart. Participants were also invited to journal for approximately two weeks between interview one and interview two. Research findings revealed that support persons feel like their lives are put on hold as their daily activities revolve around their loves ones' needs and the anticipation for a transplant call. The waiting experience involves relocation and is described as a solitary journey, in which support persons feel isolated from their relationships and their work and social life. Findings from this study indicate a need to explore and implement supportive and counselling interventions to facilitate support persons' own health and well-being.