2.50
Hdl Handle:
http://hdl.handle.net/10755/163190
Category:
Abstract
Type:
Presentation
Title:
Living With a Rare Disease
Author(s):
Vitale, Susan Ann
Author Details:
Susan Ann Vitale, PhD, RN, ANP, PNP, Molloy College, Rockville Centre, New York, USA, Email: svitale@molloy.edu
Abstract:
Purpose: The purpose of this research was to understand the experience of living with a rare disease, focusing on mycosis fungoides, a cutaneous T-Cell lymphoma. Individual disease meanings and health-related experiences were explored. Background: There are over 6,000 types of rare disorders affecting more than six million Americans. Worldwide incidence and rare disease experience are unclear. There is limited to nonexistent pharmaceutical or basic disease research. Individuals with a rare disease are geographically separated and may encounter care providers unfamiliar with their condition. Economic and societal implications include morbidity and mortality at high disease cost. Mycosis Fungoides is a cutaneous T-Cell lymphoma of unknown etiology. The average age of diagnosis is 50. Early stage disease is confused with other benign skin conditions. Late disease stage involves visceral dissemination. Methods (Design, Participants, Setting, Data Collection, Analytic approach): The research design was Hermeneutic phenomenology. Twelve participants were interviewed at various locations across the United States. Retrospective narratives and discussions were audio-taped and analyzed using van Manen's techniques. Identified themes were compared with extant literature. Results: The results of this study highlight issues related to living with a rare disease. Frustration over diagnostic delay, misdiagnosis, ineffective treatments and symptom camouflage were described in early disease stages. Diagnosis precipitated alarm concerning both lymphoma and an unimaginable rare disease. Information searches, treatment adherence, active care partnerships, and self-reliance were described. Rare disease isolation, stigma, embarrassment, and disclosure complicated striving for stability and normalcy. Hope and positive outcomes were uncovered in the midst of rare disease complications. Conclusions and Implications: The participants in this study struggled against marginalization while facing impediments with tenacity, resourcefulness, patience, and courage. A nuanced appreciation of factors involved with this affliction contributes to a fund of limited information on rare disease health care. Replication within other rare disorders would lead to conceptual development of rare disease issues.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2007
Conference Name:
19th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
Providence, Rhode Island, USA
Description:
Conference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleLiving With a Rare Diseaseen_GB
dc.contributor.authorVitale, Susan Annen_US
dc.author.detailsSusan Ann Vitale, PhD, RN, ANP, PNP, Molloy College, Rockville Centre, New York, USA, Email: svitale@molloy.eduen_US
dc.identifier.urihttp://hdl.handle.net/10755/163190-
dc.description.abstractPurpose: The purpose of this research was to understand the experience of living with a rare disease, focusing on mycosis fungoides, a cutaneous T-Cell lymphoma. Individual disease meanings and health-related experiences were explored. Background: There are over 6,000 types of rare disorders affecting more than six million Americans. Worldwide incidence and rare disease experience are unclear. There is limited to nonexistent pharmaceutical or basic disease research. Individuals with a rare disease are geographically separated and may encounter care providers unfamiliar with their condition. Economic and societal implications include morbidity and mortality at high disease cost. Mycosis Fungoides is a cutaneous T-Cell lymphoma of unknown etiology. The average age of diagnosis is 50. Early stage disease is confused with other benign skin conditions. Late disease stage involves visceral dissemination. Methods (Design, Participants, Setting, Data Collection, Analytic approach): The research design was Hermeneutic phenomenology. Twelve participants were interviewed at various locations across the United States. Retrospective narratives and discussions were audio-taped and analyzed using van Manen's techniques. Identified themes were compared with extant literature. Results: The results of this study highlight issues related to living with a rare disease. Frustration over diagnostic delay, misdiagnosis, ineffective treatments and symptom camouflage were described in early disease stages. Diagnosis precipitated alarm concerning both lymphoma and an unimaginable rare disease. Information searches, treatment adherence, active care partnerships, and self-reliance were described. Rare disease isolation, stigma, embarrassment, and disclosure complicated striving for stability and normalcy. Hope and positive outcomes were uncovered in the midst of rare disease complications. Conclusions and Implications: The participants in this study struggled against marginalization while facing impediments with tenacity, resourcefulness, patience, and courage. A nuanced appreciation of factors involved with this affliction contributes to a fund of limited information on rare disease health care. Replication within other rare disorders would lead to conceptual development of rare disease issues.en_GB
dc.date.available2011-10-27T11:03:00Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:03:00Z-
dc.conference.date2007en_US
dc.conference.name19th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationProvidence, Rhode Island, USAen_US
dc.descriptionConference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.en_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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