Grant: Master's Award: Canada Graduate Scholarships

Research has found that waiting for lung transplant can be an extremely difficult time. Individuals waiting for transplant have advanced respiratory diseases and need to be on oxygen. They are dealing with a myriad of emotional and physical issues and contemplating whether a new set of lungs will come in time. In order to qualify for the wait-list, the individual waiting must relocate so that he/she is within 2 ½ hours of the hospital [3]. Since there are only 5 lung transplant centres in eastern Canada, this can involve relocation from another province. Alongside of the waiting individual is the family caregiver. A support person (who is usually a family member) must agree to also relocate and support the individual waiting in order to be wait-listed. Support persons agree to provide full-time care during the waiting period as patients are usually in poor physical condition due to their impaired lungs. They are responsible for taking care of daily activities, driving patients to appointments and rehabilitation training, and relaying information to the healthcare team [2, 3]. Support persons’ lives are fully disrupted when their loved ones qualify for wait-listing. They leave their jobs, their social lives and sometimes family to take care of the patient. As lung transplant candidates continue to wait, their physical conditions continue to deteriorate. Support persons always have to remain a positive optimistic force, even if they themselves are uncertain and fearful. It is important to understand the experience of waiting for support persons considering that they have a significant role to play and can influence the waiting period of the patient. This study seeks to understand support persons’ experiences of waiting. The findings of this study may inform the transplant program’s delivery of resources including communication, support and education. In this study, a narrative approach will be used, which involves a focus on peoples’ storytelling about their experiences. The use of narrative can assist researchers to understand the internalized experiences and emotions of individuals. By eliciting participants’ stories in this study, it provides a safe space for support persons to voice their authentic inner perspectives, thoughts and feelings. A major advantage to using a narrative approach is that it has the potential for a wider dissemination, i.e. study results do not only have to be published in an academic research journal. With explicit consent from participants, the use of narrative findings can lead to creative methods of dissemination that may be more accessible to the wider public, practitioners in other health care fields and policy stakeholders (e.g. [1]). In this way, this study facilitates the credible storytelling from the family caregiver’s point of view. References. [1] Lapum, J., Ruttonsha, P., Church, K., Yau, T., & Matthews David, A. (2011). Employing arts in research as an analytic tool and dissemination method: Interpreting the experience through the aesthetic. Qualitative Inquiry, 18(1), 100 – 115. [2] Lefaiver, C. A., Keough, V. A., Letizia, M., & Lanuza, D. M. (2009). Quality of life in caregivers providing care for lung transplant candidates. Progress in Transplantation, 19(2), 142-152. [3] University Health Network [UHN] (2012). Catch your breath! A guide to lung transplant for families and support people. Retrieved from http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Lung_Transplant/Doc