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Authors

  1. Rossi Schwartz, Rose

ABSTRACT

Huntington's disease (HD) is a progressive neurogenetic disorder that has a 50% inheritance rate. The ability to have 100% confirmation of the illness became a reality with the discovery of the gene in 1993. The effect of confirmatory testing and the issues faced by the individual and the family facing diagnosis have not been addressed. The purpose of this research study was to explore the meaning of being diagnosed with HD using narrative inquiry. Ten participants, during the first year of diagnosis, were asked to tell their story of what it meant to be diagnosed with HD. A holistic-content approach was used for data analysis. An integrated narrative, "The Story of HD: Ripples From a Stone Skipping Across the Lake," was created from the stories. The stories were analyzed for plot, predicaments, protagonist, and antagonist. The predicaments of "discovering the existence of HD," "confirming the diagnosis of HD," "revealing the diagnosis to others," and "experiencing the reverberations of HD" served as the main chapters that formed the structure of the stories. Each predicament contains a set of themes that function as subheadings for the chapters. In the final chapter or epilogue, participants were asked to reflect on the meaning of being diagnosed with HD. The psychological impact of receiving a positive genetic diagnosis has implications for patients and their extended families. Nurses should develop their understanding of the role of genetics in healthcare today. Clinical evaluations of the effectiveness of treatments and assessment for changes in mood, behavior, and motor function are an essential part of nursing care. Advocacy and supportive roles must be incorporated into the patient visit. Patient education material on home safety, nutrition, medication management, and general health practices should be provided during the outpatient visits. Through the development of a more comprehensive role, the nurse can assist patients and families in finding the personal meaning of being diagnosed.