Striving for normalcy: symptoms and the threat of rejection after lung transplantation

The purpose of this paper is to describe the psychosocial process of the symptom experience associated with the threat of organ rejection after lung transplantation. A grounded theory approach, including theoretical sampling and constant comparative analyses, was used in a sample of 14 lung transplant recipients who varied in age, gender, underlying lung disease, experience with rejection, and time since transplantation. ‘Striving for normalcy’ was the core process linking each of the four stages of the symptom experience and interpretation: naïveté, vulnerability, discovery, and insight. Each stage was marked by an initiating event, a predictable symptom response, and a dialectic (an internal struggle between recipients’ personal perceptions of the situation and the juxtaposed understandings of the situation that they gleaned from transplant clinicians). Each stage was also labeled with a descriptor of the aspect of striving for normalcy that accounted for the variation in the symptom responses that recipients exhibited, the dialectics they faced, and the exemplars for each stage of the process. During the stage of naïveté, recipients were elated at improvements after transplantation, and often denied or delayed reporting symptoms. Once they experienced a rejection episode they entered the stage of vulnerability and became more vigilant about symptoms. The discovery stage was marked by the realization that rejection lacked characteristic symptoms; therefore, it was important to recognize any changes from their baseline condition. Recipients who achieved the insight stage realized that until they gave up some independence in exchange for interdependence, extended periods of normalcy eluded them, and embraced a reciprocal relationship with the transplant team. Knowledge that recipients’ experience evolves over time from furtive hope during the stage of naïveté to qualified hope during the insight stage, directs us to intervene using stage-specific interventions to promote better symptom recognition and reporting.