This study presents a hypothesis of the primary cause of psychological distress after HTX and provides a useful framework for how to approach this condition.

The concept analysis by Allvin et al. was possible to expand to fit the lung transplantation context and a new contextual definition of post-transplant recovery after solid organ transplantation was developed. Recovery and health were viewed as two different things.

The result enables a unique possibility to enhance the lung recipients' striving for everyday life and thereby promote health. There is a need for change in the existing multidisciplinary transplant team to also include an occupational therapist to support and guide the lung recipients in changing their occupational patterns.

Background In recent years, survival after lung transplantation has remained largely unchanged despite improvements in short‐and intermediate‐term survival, indicating the need to identify factors associated with recovery and long‐term survival. Very little is known about how lung recipients recover after lung transplantation and whether such factors are related to symptom distress and well‐being. This constitutes the rationale of the study. Aim The aim was to explore symptom prevalence and distress as well as the degree of self‐reported perceived recovery and well‐being 1–5 years after adult lung transplantation. Method This multicentre, cross‐sectional nationwide study includes 117 lung recipients due for follow‐up at 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) and 5 years (n = 11). Three different self‐assessment instruments were utilised; The Postoperative Recovery Profile, the Organ Transplant Symptom and Well‐Being Instrument, and the Psychological General Well‐Being Instrument. Ethical approval of the study was obtained. Results Few (5.7%) lung recipients were recovered 1–5 years after lung transplantation and 27.6% were not recovered at all. No relationship was identified between present lung function and self‐reported recovery or well‐being. There was a strong relationship between recovery and well‐being. It is possible to be partly recovered and experience good health. The most prevalent symptoms were tremor 66%, breathlessness 62%, and decreased libido 60%, while the symptoms perceived as most distressing were embarrassment about appearance, decreased libido, and poor appetite. Limitations The cross‐sectional design prevents identification of any causal relationships. Patient loss due to transplant mortality and inclusion difficulties resulted in a fairly small sample. Conclusion Our findings suggest the need for changes in follow‐up care such as systematic measurement of the degree of self‐reported recovery and symptoms. This entails self‐management support tailored to the recipients' symptom‐management and health‐management requirements.