An Internet based protocol for examining transitional experiences of 1626 year olds with Turner syndrome (TS)
Kelly Mullholand Behm1,2
Problem: Programs for adolescents with Turner syndrome (TS) are currently based on evidence derived from medical surveillance or parental and teacher perceptions. Little is known about how personal perceptions in this population influence behavior and psychosocial outcomes. Facing issues associated with puberty and young adulthood, such as body image, relationships, and careers, can be more challenging when living with TS.
Framework: Unlike frameworks for chronically ill adolescents that focus on medical aspects of care for co-morbidities, the Meleis Transitions Theory integrates concepts, change processes, and multifaceted contexts that permit broader analysis of perceptions of life experiences. The theory encompasses the nature of transition, its facilitators and inhibitors, and process and outcome indicators.
Methodology: This study utilizes a descriptive, qualitative, cross-sectional design with a theory driven thematic analysis. Recruitment is via the internet and referral from health care providers and support groups. Consent occurs through an interactive electronic document. Data are extracted from interviews conducted through sequential e-mails with participants.
Subjects: The sample includes 20 females with TS, ages 1626. TS results from an arrangement of chromosomes demonstrating complete or partial absence of one X-chromosome.
Anticipated analysis: Coding and thematic analysis of interview data are ongoing using NVivo9 and Excel.
Results: In preliminary analysis, participants describe their individual experiences, conditions surrounding life changes, and patterns of personal response. Normal vs not normal is an overriding theme. Multiple transitions occur simultaneously. There is marked frustration with lack of public awareness of TS. Primary supports are family, friends, and religion rather than health care providers.
Implications: Nurses working with young women with TS need a better understanding of the variables of transition facing this population, as well as factors that enhance or inhibit positive psychosocial outcomes. Strategies for addressing unmet psychosocial and cognitive needs must be developed with the input of affected individuals.
Comments/keywords: Keywords: Turner syndrome, transition, adolescence, adolescent.