Date of Graduation

2001

Document Type

Thesis

Degree Type

MS

Committee Chair

June Larrabee

Abstract

Previous qualitative studies about the lived experience of persons with rheumatoid arthritis (RA) have yielded common themes, such as becoming aware, seeking help, learning to live with the disease, and uncertainty (Brown & Williams, 1995; Ryan, 1996; Shaul, 1995, 1997; Yoshida, 1996). Gaps identified included lack of personalized guidance and support from health care providers, gender differences, and the active role of the patient in managing the disease (Brown & Williams, 1995; Ryan, 1996; Shaul 1995, 1997). This study addressed two of the three gaps previously mentioned: (a) personalized nursing care, and (b) patient as active manager of the disease. Therefore, the purposes of this phenomenological study are a threefold exploration of: (a) the essence of the lived experience of RA as described by persons afflicted with the disease, (b) the patient’s view of the nurse’s role and influence, and (c) the concept of the patient as co-manager of the disease. Phenomenology was the philosophical basis for the study, and Colaizzi’s (1978) method was used to analyze the data following completion of audiotaped interviews. Six participants had a definitive diagnosis of RA, ranging from 7 to 38 years duration, recruited through purposive sampling. The data revealed six categories of themes, including grieving while growing, persuading self and others of RA’s authenticity, confronting negative feelings, cultivating resilience, navigating the health care system, and masterminding new lifeways. A rich description of the lived experience of RA is described as the dramatic transformation of a caterpillar to a butterfly. This study provides nurses with valuable information related to personalized, holistic, and humanistic care as applied to the everyday lived reality of the patient, which may ultimately improve overall outcomes in the quality of the patient’s life.

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