Having narcolepsy: The experience and treatment in children, adolescents and young adults.
Item
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Title
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Having narcolepsy: The experience and treatment in children, adolescents and young adults.
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Identifier
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AAI9732989
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identifier
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9732989
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Creator
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Zafarlotfi, Susan.
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Contributor
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Adviser: Barbara Katz-Rothman
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Date
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1997
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Language
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English
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Publisher
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City University of New York.
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Subject
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Sociology, Individual and Family Studies | Health Sciences, General | Psychology, Behavioral | Psychology, Social
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Abstract
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Narcolepsy is a neurological disorder with the primary symptom of excessive daytime sleepiness (EDS), where afflicted individuals report feeling easily tired or fatigued all the time. They tend to fall asleep in many situations where most people remain awake. Persons with narcolepsy may also report sudden attacks of cataplexy which are brought on by strong emotions such as stress or laughter.;Narcolepsy's other symptoms include sleep paralysis, a brief loss of muscle control and hypnagogic hallucinations, which are vivid, dreamlike experiences that are difficult to distinguish from reality.;This study was designed to go beyond the medical diagnosis of narcolepsy and explore the illness experience, from the point of view of afflicted children, adolescent and young adults; to understand their fears, their hopes, the everyday life difficulties they are faced with.;Methodology. This research study is an exploratory case study. The data was analyzed through qualitative procedures which are based on strategy that combines data and analysis. For this study I interviewed 53 individuals officially diagnosed as having narcolepsy prior to my interview. The diagnosis was made after each individual had polysomnography followed by MLST (multiple sleep latency test) confirming the diagnosis of narcolepsy. Of those 53 respondents, 30 were male and 23 were female, ranging from 6 1/2 years of age to 33 years, with an average age of 20 for males and 22 for females at the time of interview.;In addition to 53 respondents interviewed, 44 family members were also interviewed. Of those family members, 36 were parents and legal guardians, five were spouses of the participants (three wives and two husbands), and four siblings of respondents.;Once the information was gathered, the following issues were examined: (1) The Process of Diagnosis; The discovery of "what is wrong" and the impact of learning the diagnosis. (2) Narcolepsy and Self; The analysis of stigma and embarrasement attached to the disease. (3) Narcolepsy and Public Life; The experience of everyday life with narcolepsy and teenagehood, college life, sports, driving, work and their problematics. (4) Narcolepsy and Family Life; The impact of narcolepsy on family, dating, marriage with narcolepsy. (5) Treatment of Narcolepsy; The experience of medical treatment. (6) Psychosocial Treatment of Narcolepsy; Counseling and Support Groups.;Conclusion. The research analysis supports:;Delayed time between the time of self diagnosis and time of clinical diagnosis of Narcolepsy. This is due to mis or undiagnosis.;The results support the need to create awareness about Narcolepsy so the children and young adults would not go for years without knowing what is wrong with them.;Individuals with Narcolepsy are pushed to social isolation, due to the nature of the disorder. The significance of individual counseling and interaction with others who have Narcolepsy (support group) and its positive effects were felt by patients and their family members.
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Type
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dissertation
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Source
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PQT Legacy CUNY.xlsx
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degree
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Ph.D.
