Turner syndrome (TS) is a sex chromosome condition that occurs in approximately 1/2500 live female births. Despite the prevalence of this chromosomal condition, the challenges these women face throughout their lives are not fully understood. This qualitative research study aimed to characterize the subjective experiences of individuals with Turner syndrome throughout their lifespan, to investigate their concerns and obstacles, and to offer insight into the strengths and weaknesses of health care delivery, as they perceived them.Ninety-seven girls and women with TS and 21 parents consented to participate in this interview study. Interviews were semi-structured and open-ended in design. Questions sought to elicit responses relating to existing concerns associated with their condition and positive and negative health care experiences. Participants were divided into four age categories (childhood, adolescence, adulthood, and mature adulthood) to facilitate a comparative analysis across the age spectrum.Regardless of age, infertility was the most frequently cited concern followed closely by short stature. Sexual development and function and general health were also viewed as challenges by a number of participants in each age group.Although the relative weight of these four concerns tended to shift based upon the individual's age and life experiences, all four issues remained significant throughout the lifespan. Enhanced awareness of the evolving physical and psychological challenges faced by girls and women with TS may help health care providers improve the quality of life for these individuals.
The Tongue Drive System (TDS) is a wireless and wearable assistive technology, designed to allow individuals with severe motor impairments such as tetraplegia to access their environment using voluntary tongue motion. Previous TDS trials used a magnetic tracer temporarily attached to the top surface of the tongue with tissue adhesive. We investigated TDS efficacy for controlling a computer and driving a powered wheelchair in two groups of able-bodied subjects and a group of volunteers with spinal cord injury (SCI) at C6 or above. All participants received a magnetic tongue barbell and used the TDS for five to six consecutive sessions. The performance of the group was compared for TDS versus keypad and TDS versus a sip-and-puff device (SnP) using accepted measures of speed and accuracy. All performance measures improved over the course of the trial. The gap between keypad and TDS performance narrowed for able-bodied subjects. Despite participants with SCI already having familiarity with the SnP, their performance measures were up to three times better with the TDS than with the SnP and continued to improve. TDS flexibility and the inherent characteristics of the human tongue enabled individuals with high-level motor impairments to access computers and drive wheelchairs at speeds that were faster than traditional assistive technologies but with comparable accuracy.
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