| Problem: Efforts to assist individuals ages 16 to 26 with Turner Syndrome (ITS) have been primarily based on evidence derived from medical surveillance or parental and teacher perceptions. Rarely have researchers explored how 16 to 26 year olds with TS perceive themselves. Little is known about what factors influence behavior and psychosocial outcomes in this population when facing issues associated with the transition from adolescence to young adulthood, such as body image, relationships, education, or careers.;Design: This is a study with a descriptive, qualitative, cross-sectional design guided by the Transitions Theory, with a theoretically driven thematic analysis.;Framework: The Transitions Theory integrates transitional concepts, change processes, and multifaceted contexts that permit broader analysis of the impact of life experiences individuals with TS identify as important to them during their transition from adolescence to young adulthood. Primary concepts in the theory include the nature of transition, its facilitators and inhibitors, and process and outcome indicators.;Methods: Recruitment occurred via the internet and referral from health care providers and support groups. Consent was obtained via an interactive electronic document. Data were extracted from participant interviews with 10 adolescents (16-18 years) and 14 adults (19-26 years) from 13 US states and Denmark. Interviews were conducted through sequential e-mails containing theoretically derived questions about participant experiences as an adolescent or young adult with TS. Data were analyzed using a theoretically driven thematic approach using Microsoft Excel for data management.;Results: Participants describe the nature of transition, conditions surrounding transitional changes, and patterns of personal response. "Normal" versus "not normal" is the overriding theme, with TS always in the background of every experience. Age at diagnosis, seve1ity of physical manifestations, diagnosis of other chronic conditions, and memories of initial disclosure from a parent and/or physician leading to awareness of having TS all affect individual adjustment to living with TS. Critical events include facing infertility, disclosure to peer group, and driving. Challenges include shyness related to social interactions, effects of non-verbal learning disorder on academic performance, enduring years of daily hormone injections and medical surveillance, and facing teasing and stereotyping. The internet is frequently identified as the main ongoing source of knowledge and preparation, particularly for connecting with other individuals with TS. For those who have the resources, regional and national conferences for individuals with TS provide an environment that promotes "normalcy" and often results in long-term friendships. Primary supports are family, a small core group of close friends, and religion, rather than health care providers. There is marked frustration with lack of awareness of TS in the general public, among educators, and within the medical community. Rather than being identified with a specific chronologic age, participants variously define reaching adulthood as being capable of self-care, independent decision making, maturity, responsibility, financial and physical independence from parents, and planning for the future.;Conclusions: Individuals with TS who are transitioning from adolescence to young adulthood often feel that they are misunderstood, and that both the general public and the health care community are either unaware of or misinformed about TS and what living with TS is like. They note a deficit in education currently provided by their health care providers leaving them unprepared to deal with the academic and social challenges associated with their TS related non-verbal learning disorder. Finally, they report a cultural insensitivity to the emotional pain of coming to terms with their infertility. Health care providers working with adolescents and young adults with TS need a better awareness and understanding of the variables of transition facing this population, as well as factors such as those noted above that enhance or inhibit positive psychosocial outcomes. Strategies for addressing un met psychosocial and cognitive needs must be developed with the input of affected individuals to avoid misunderstanding. Lastly, internet based resources are very attractive to this population and should be considered along with other technologies, such as simulation, in future program development. |
