Elsevier

Social Science & Medicine

Volume 59, Issue 7, October 2004, Pages 1473-1484
Social Science & Medicine

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

https://doi.org/10.1016/j.socscimed.2004.01.013Get rights and content

Abstract

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: naı̈veté, 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 naı̈veté, 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 naı̈veté to qualified hope during the insight stage, directs us to intervene using stage-specific interventions to promote better symptom recognition and reporting.

Section snippets

Background and significance

Over 8000 Americans have undergone lung transplantation for the primary purpose of prolonging survival and improving their health-related quality of life (UNOS, 2002). Tremendous resources, both financial and personal, have been expended to improve surgical techniques and immunosuppression regimens, thereby increasing the likelihood of success after lung transplantation. Survival rates currently reach up to 75% for year one, but gradually decline to 55% by year three (Arcasoy & Kotloff, 1999).

Sample and setting

The study was conducted at a university-based pulmonary transplant center. All recipients returned to the center routinely for follow-up evaluation under a surveillance protocol (every 3 months during the first year, every 4 months during the second year, at 6-month intervals thereafter) and whenever a change in their condition warranted medical evaluation. Between routine follow-up visits, recipients are expected to take medications, perform self-monitoring activities, and report changes in

Findings

Prior to transplant, lung candidates were informed that rejection of the donor lung is virtually inevitable. All recipients reported being told, “Expect some rejection some day, it comes with the territory. Rejection can happen anytime in your life.” (Mrs. Cloke) Without exception, participants in this study verbalized: “Having a transplant is like trading one set of problems for another…always facing the threat of rejection… it's a trade-off.” (Mrs. Stiber) However, when questioned directly

Discussion

Individuals awaiting lung transplantation live a life that is limited and governed by their lung disease. The anticipated course of their illness is commonly one of gradual deterioration, punctuated by intermittent flare-ups in their underlying condition. Having an end-stage pulmonary illness means that as their condition worsens, they are forced to give up many activities because of debilitating symptoms, need for oxygen, and activity intolerance. Disability is accompanied by an awareness that

Limitations

The recipients in this study were participants of only one transplant program that employs an aggressive surveillance protocol involving transbronchial biopsy and bronchoalveolar lavage to detect rejection and other post-transplant complications. It is unknown if the process of developing insight over time is expedited by providing objective evidence of rejection and may limit the extent to which findings may be generalized to other centers without such protocols.

Additionally, although attempts

Implications

Knowledge of the process of how recipients evaluate and attribute symptoms to the threat of rejection has implications for promoting more effective patterns of symptom recognition and reporting. Because recipients’ expectation of normalcy is seeded before transplant, it directs us to intervene early to assist lung candidates to comprehend the real threat that untreated rejection poses to the achievement of normalcy within illness. Clinicians also need to remind recipients that it is common to

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  • Cited by (0)

    Funded by NINR, NIH, US Public Health Service (F31 NR07425), Pennsylvania Nurse Foundation, Pauline Thompson Research Award, Enid Goldberg Research Award, Sigma Theta Tau, Eta Chapter.

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