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The experience of health in chronic illness : the perspectives of adults diagnosed with end-stage renal disease during adolescence Venables, Lisa Jane

Abstract

The purpose of this study was to investigate the experience of health in chronic illness from the perspectives of adults diagnosed with end-stage renal disease (ESRD) during adolescence. Grounded theory methodology was used to guide this qualitative study. Data was collected in two interviews from eight young adults who were diagnosed with ESRD during adolescence. Interviews were audiotaped and transcribed for analysis using the constant comparative method. Five themes emerged from the data and included; the diagnosis in adolescence, having a sense of control over ESRD, facilitators of control, threats to control, and descriptions of the concept "health". The findings were developed into a grounded theory. The experience of health involves the fluctuating state of perceived control and perceived loss of control over the disease as individuals are faced with both facilitators and threats to control. When individuals are diagnosed with ESRD during adolescence, they initially perceive having no control over the disease because others assume control, they are unable to do things that are important, and they feel the disease sets them apart from their peers. This lack of control and their desire for independence and to be like their normal peers, results in the adolescent with ESRD attempting to take control. Having a sense of control over ESRD becomes the preferred way of being throughout adolescence and into adulthood. When individuals are able to have a sense of control over the disease they are able to experience a sense of health which allows them to do what they want, have the abilities of a normal person, and not focus on the disease. The theory raises issues regarding the fluctuating nature of the experience of health, the implications of the diagnosis of a chronic illness in adolescence, and the concept of perceived control as a balance between being controlled by the disease and controlling the disease by not attending to its physiological needs. These issues were discussed in relation to current literature regarding the diagnosis of chronic illness in adolescence, issues of compliance, and models of chronic illness.

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