“Doing it, that’s something else”: a glimpse into self-management after lung transplantation

The most recent data from the International Thoracic Organ Transplant Registry report a median survival of 6.7 years after lung transplantation.1 Lung transplant recipients need to continually adhere to a complex self-management regimen2 to protect the transplant from infection or rejection.3 In light of this, and in acknowledgment that lung transplantation is no cure for chronic disease, the focus of care after lung transplantation has shifted to the long term.4 Although the need for self-management is well established in the minds of professionals and transplant recipients alike,5 research very clearly demonstrates that many transplant recipients experience considerable challenges adhering to the necessary tasks on a daily basis.6 As health professionals, we find ourselves staring into a black hole: if transplant recipients are aware of what to do and why they need to do it, why do they still encounter such difficulties? How can we provide them with the best possible support? Moreover, what are lung transplant recipients’ attitudes towards self-management? What experiences shape their behavior? Our review7 in this issue of JBI Evidence Synthesis aimed to explore these questions. To do so, we specifically searched for qualitative studies that would give us an in-depth insight into life after lung transplantation. We included 10 publications from North America and Central and Northern Europe, which we synthesized using the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). From the 137 findings extracted from the original research, we identified 4 synthesized findings. Although these synthesized findings were graded as low to moderate according to the ConQual approach,8 they provide valuable information about the inner lives of lung transplant recipients. The first synthesized finding presented in the review illustrates how strongly routines, beliefs, and a sense of responsibility need to be adapted in order to meet self-management requirements. Some transplant recipients embrace these changes as part of their new identity, while others find them difficult or intrusive. The second synthesized finding highlights that life after lung transplantation is by no means only perceived as a positive, and negative aspects are also clearly experienced. Life after lung transplantation is marked by a high degree of uncertainty, as it may not fully restore health and well-being as many recipients might expect. Despite a significant improvement in quality of life, recipients face new physical and emotional challenges and must accept that they will never be entirely free from disease. The third synthesized finding highlights that psychosocial support is essential after lung transplantation, as many recipients have to deal with their own feelings and beliefs surrounding fear of graft failure and processing a renewed joy for life. Additionally, this synthesized finding reveals a wide range of beliefs about self-management after lung transplantation, particularly regarding medication adherence. Clinically, this underscores the need for consistent, high-quality follow-up over time, as even experienced recipients may not fully grasp the importance of self-management tasks. Likewise, the final synthesized finding emphasizes the crucial role of social engagement for lung transplant recipients. This extends beyond their social network to include the medical team and a sense of indebtedness and commitment to the deceased lung donor. The results of this qualitative synthesis embodied in these synthesized findings clearly illustrate that there is a great deal more behind following self-management tasks than “just doing it.” In reality, self-management requires rediscovering oneself in a completely new identity that goes far beyond simply following tasks in a situation where, in purely medical terms, much may be within reach again. Although findings from only 10 studies were included in this review, we believe that, for health professionals, this work provides useful insight into the perceived realities of lung transplant recipients’ lives, and in doing so, may help better inform how to support this group of patients to embrace their new identity as transplant recipients.