Bringing threat to the fore: participating in lifelong surveillance for genetic risk of cancer.

PURPOSE/OBJECTIVES To explain how patients with multiple endocrine neoplasia type 2a (MEN2a) and family members conceptualize participation in lifelong surveillance in genetic cancer care. DESIGN Qualitative naturalistic inquiry. SETTING Northeastern United States. Data were collected during interviews in informants' homes. SAMPLE 12 adult patients and 9 family members were recruited purposively through endocrinology clinics at two East Coast medical centers. METHODS A grounded theory design was used. Subjects completed a demographic questionnaire and were interviewed on two occasions. In-depth interviews were audiotaped. The core concept and process variables emerged through three levels of narrative content analysis, theoretical sampling, and constant comparison. The generated theory was presented to the participants for validation. MAIN RESEARCH VARIABLES The basic psychological issue associated with participation in lifelong surveillance and the psychosocial processes used by individuals to deal with the issues. FINDINGS MEN2a patients and family members experience surveillance as a (Re)Minding of a threat to health. Once threat is brought to the fore, participants interpret the meaning and negotiate control of the impact of the diagnosis, related events, and consequences. Meaningful information from surveillance activities is incorporated into participants' self-image and daily lives through a process of (Re)Integration. The genetic nature of MEN2a did not emerge as a significant subcategory in relation to the core variable. CONCLUSIONS Finding meaning in the outcomes of surveillance events is a psychosocial process that is central to participation in lifelong surveillance. Genetic predisposition to cancer was a peripheral concern to subjects as they dealt with surveillance issues. IMPLICATIONS FOR NURSING This investigation provides a model for the development of a grounded theory for understanding how people with other genetic cancer syndromes participate in lifelong surveillance.