Paper
Friday, July 23, 2004
Adolescent Women’s Experience Growing Up With a Neurological Disability: A Qualitative Phenomenological Study
Kathleen J. Sawin, DNS, CPNP, FAAN, College of Nursing, University of Wisconsin-Milwaukee and Childrens Hospital of Wisconsin, Milwaukee, WI, USA, Melissa Bellin, MSW, School of Social Work, Virginia Commonwealth University, Richmond, VA, USA, Gayle Roux, PhD, RN, CNS, NP-C, Nursing, Virginia Commonwealth University, Richmond, VA, USA, Constance F. Buran, DNS, CNS, Rehabilitation Medical Service Area, Riley Hospital for Children, Indianapolis, IN, USA, Timothy J. Brei, MD, Developmental Pediatrics, Indiana University, Indianapolis, IN, USA, and Philip S. Fastenau, PhD, Department of Psychology, School of Science, Indiana University/Purdue University, Indianapolis, Indianapolis, IN, USA.
| Learning Objective #1: Delineate the essential components of the experience of growing up with a disability, reported by young women in the study |
| Learning Objective #2: Discuss targeted interventions for adolescents or their parents, based on the data from this study |
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.
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Sigma Theta Tau International
July 22-24, 2004