Introduction: Providing support throughout the lung transplant process is an intensive task, which requires a dedicated caregiver. The needs of caregivers who must relocate with their loved one receiving the transplant are currently unknown. The objective of this study is to explore experiences and perceptions of lung transplant caregivers identified from a satellite clinic to inform the development of educational resources. Methods: A qualitative study with a phenomenology approach was undertaken with individuals who have taken on the role of a caregiver for lung transplant candidates or recipients and must travel to the specialized transplant center. Semistructured interviews were conducted with 12 caregivers. Interviews conducted by phone were audio-recorded and then transcribed verbatim. NVivo software was used to code the data and identify emerging themes. Results: Ideas were classified into the following 4 themes: (1) the stress of being a caregiver, (2) caregivers undertake a variety of roles, (3) caregivers require support, and (4) satisfaction with health care providers. Even though the caregivers lived an average of 7.1 (standard deviation 2) hours from the surgical transplant center, all expressed satisfaction with the level of care that they received. Caregivers identified several stressors during the transplant process and described various strategies for coping. Conclusion: Caregivers shared their experiences on the transplant process. It was evident that being a caregiver was a stressful and supports were necessary for those undertaking this role. These insights will help inform the development of a new educational resource for patients and caregivers.
Introduction Patients awaiting lung transplantation must learn new information to successfully navigate the transplant process. A supplemental video series was piloted to patients at home during the Covid-19 pandemic to improve pre-transplant education. Methods A mixed methods study was undertaken to assess patient experiences with this method of education, confirm the ideal timing of the education, and identify gaps that require further attention. Semi-structured interviews were conducted with 17 one-on-one or dyadic (patients and caregivers) who viewed the video series at home. A third-party researcher (not involved in creation of the educational materials) conducted the interviews by phone, which were audio recorded and then transcribed verbatim. NVivo 12 Pro for Windows software was used to code the data and identify emerging themes. Results Participants indicated that home-based videos were applicable, and informative and helpful (4.7 on 5-point Likert scale) and appreciated the advice and experiences of real patients. They were satisfied with their transplant education (4.2/5). While there were few aspects that the participants disliked about the videos, the interviews elicited outstanding questions about the transplant process (eg, logistical aspects of travel) and transplant concerns (eg, medications, expenses, and precautions in daily life). Conclusion Patients being assessed or listed for lung transplant valued the novel electronic video education, and we will implement the home-based process into standard of care after the patient's initial visit with the transplant respirologist. Pre-transplant education will be tailored to help address the outstanding gaps identified in this program evaluation.
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