Adolescent Women’s Experience Growing Up With a Neurological Disability: A Qualitative Phenomenological Study

2.50
Hdl Handle:
http://hdl.handle.net/10755/152736
Type:
Presentation
Title:
Adolescent Women’s Experience Growing Up With a Neurological Disability: A Qualitative Phenomenological Study
Abstract:
Adolescent Women’s Experience Growing Up With a Neurological Disability: A Qualitative Phenomenological Study
Conference Sponsor:Sigma Theta Tau International
Conference Year:2004
Conference Date:July 22-24, 2004
Author:Sawin, Kathleen J., DNS, CPNP, FAAN
P.I. Institution Name:University of Wisconsin-Milwaukee and Childrens Hospital of Wisconsin
Title:Professor and Joint Research Chair in the Nursing of Children
Co-Authors:Melissa Bellin, MSW; Gayle Roux, PhD, RN, CNS, NP-C; Constance F. Buran, DNS, CNS; Timothy J. Brei, MD; Philip S. Fastenau, PhD
Background: Youth with chronic neurological disabilities previously fatal are now growing into young adulthood. Data demonstrate adult women with disabilities are at higher risk for negative outcomes than men with disabilities or women without disabilities. Yet little is known about the experience of young women growing up with a disability. Purpose: The purpose of the study was to investigate adolescent and young woman’s experience of growing up with a chronic neurological condition. Sample: Semi-structured interviews of 31 adolescent women with spina bifida (SB) were conducted as a part of a larger study. Participants were 12-21 years old, English speaking, with no other severe or progressive chronic health condition. Method: Content analysis using a three-step process was used. First, two authors analyzed the transcripts and identified themes and sub themes. Second, the first three authors categorized data by this framework. Finally, the final three authors analyzed the data, themes and sub themes for conceptual fit, clinical relevance and ability to accurately reflect the experience or stories reported. Results: This analysis resulted in two domains: 1) self -concept and 2) self-management. Five themes and 15 sub themes were identified in the first domain and 6 themes and 25 sub themes were identified in the second domain. Some themes reflected major variably between subjects (e.g., some families were identified as primarily protective while others were identified as primarily working to keep the teens as normal as possible). In contrast others reflected generally common experiences (e.g., being teased or bullied). No clear pattern of themes emerged either by SB severity (spinal lesion) or age. Implications: Nurses developing effective individualized interventions that target health and optimize daily functioning must base these interventions on understanding the lived experience of these young women. Hearing the “unfiltered voices” of study participants facilitates that understanding.
Repository Posting Date:
26-Oct-2011
Date of Publication:
22-Jul-2004
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleAdolescent Women’s Experience Growing Up With a Neurological Disability: A Qualitative Phenomenological Studyen_GB
dc.identifier.urihttp://hdl.handle.net/10755/152736-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Adolescent Women&rsquo;s Experience Growing Up With a Neurological Disability: A Qualitative Phenomenological Study</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2004</td></tr><tr class="item-conference-date"><td class="label">Conference Date:</td><td class="value">July 22-24, 2004</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Sawin, Kathleen J., DNS, CPNP, FAAN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Wisconsin-Milwaukee and Childrens Hospital of Wisconsin</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Professor and Joint Research Chair in the Nursing of Children</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">sawin@uwm.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Melissa Bellin, MSW; Gayle Roux, PhD, RN, CNS, NP-C; Constance F. Buran, DNS, CNS; Timothy J. Brei, MD; Philip S. Fastenau, PhD</td></tr><tr><td colspan="2" class="item-abstract">Background: Youth with chronic neurological disabilities previously fatal are now growing into young adulthood. Data demonstrate adult women with disabilities are at higher risk for negative outcomes than men with disabilities or women without disabilities. Yet little is known about the experience of young women growing up with a disability. Purpose: The purpose of the study was to investigate adolescent and young woman&rsquo;s experience of growing up with a chronic neurological condition. Sample: Semi-structured interviews of 31 adolescent women with spina bifida (SB) were conducted as a part of a larger study. Participants were 12-21 years old, English speaking, with no other severe or progressive chronic health condition. Method: Content analysis using a three-step process was used. First, two authors analyzed the transcripts and identified themes and sub themes. Second, the first three authors categorized data by this framework. Finally, the final three authors analyzed the data, themes and sub themes for conceptual fit, clinical relevance and ability to accurately reflect the experience or stories reported. Results: This analysis resulted in two domains: 1) self -concept and 2) self-management. Five themes and 15 sub themes were identified in the first domain and 6 themes and 25 sub themes were identified in the second domain. Some themes reflected major variably between subjects (e.g., some families were identified as primarily protective while others were identified as primarily working to keep the teens as normal as possible). In contrast others reflected generally common experiences (e.g., being teased or bullied). No clear pattern of themes emerged either by SB severity (spinal lesion) or age. Implications: Nurses developing effective individualized interventions that target health and optimize daily functioning must base these interventions on understanding the lived experience of these young women. Hearing the &ldquo;unfiltered voices&rdquo; of study participants facilitates that understanding.</td></tr></table>en_GB
dc.date.available2011-10-26T11:47:50Z-
dc.date.issued2004-07-22en_GB
dc.date.accessioned2011-10-26T11:47:50Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
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