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Try out PMC Labs and tell us what you think. Learn More. 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 de. 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 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 of participants in each age group. 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. Turner syndrome is a relatively common condition due to the full or partial deletion of the second sex chromosome, resulting in a 45,X karyotype and a female phenotype.
Physical features associated with a TS karyotype may include: ovarian failure with associated infertility, short stature, cardiovascular and renal malformations, hypertension, diabetes, hearing loss, skeletal abnormalities and neck webbing [ Lippe ; Sybert ; Cunniff ; Elsheikh et al.
Girls and women with TS generally have a normal range of cognitive abilities but may have learning difficulties, particularly related to nonverbal skills such as visual-spatial abilities, motor coordination, and mathematics [ Skuse ; Sylven et al. A of studies on Turner syndrome provide recommendations to health care providers on how to improve the overall physical and psychological health of girls and women with TS [ Rieser ; Sylven et al.
Published timelines for administering various tests and explanations of symptoms and complications of TS serve as references for health care providers [ Sylven et al. Although general information addressing future health concerns of women with TS exists, such as osteoporosis, hearing loss, and cardiovascular disease, the majority of women with TS are not monitored adequately for these late-onset diseases and conditions [ Ross ; Elsheikh et al.
Consequently, less is understood about the overall morbidity and mortality of women with TS and many women are left with unanswered questions about their future [ Sybert ]. In addition to the relative lack of research into the consequences of TS on affected adults, few studies present the challenges associated with TS and areas of needed improvement in health care as articulated by girls and women living with the condition [ Sylven et al.
The goal of this qualitative research study was to explore concerns experienced by girls and women with Turner syndrome across the lifespan, specifically from childhood to mature adulthood. To the best of our knowledge this is the largest data collection of its kind within the Turner syndrome population.
A comparative analysis of this data allowed both an exploration of the challenges affecting girls and women with TS across the ages, as voiced by the girls and women themselves, and an opportunity to identify whether age distinctions exist among commonly cited TS concerns. A secondary objective of this study was to offer girls and women with TS, as well as their parents, an opportunity to reflect and comment on their past and present health care experiences and propose suggestions as to how providers might improve the future delivery of health care to other individuals with Turner syndrome.
Twenty-one parents of children and adolescents also consented to participate: of these, 4 were interviewed on behalf of their young daughters who were too young to participate, 7 were interviewed in conjunction with their young daughters, and the remaining 10 were interviewed separately from their adolescent daughters.
No one invited to participate declined participation in this study. For the purpose of analysis we used the parent interviews of the four youngest girls who were too young to be interviewed as the source of their data. This was noted accordingly in the reporting of . The open-ended questions addressed the time of diagnosis, various past and present health conditions, concerns and challenges of living with TS, sources of information and support, advantages of living with TS, and suggestions for health care providers HCPs on how to improve the health care experiences of girls and women living with TS.
The audiotaped interviews were transcribed verbatim to facilitate the qualitative analysis. The initial codebook was deed based on the reading of the first few transcripts, listing topics underscored throughout the interview sessions. Illustrative quotations were then culled to convey those themes. Given the large of coders, several steps were taken to ensure coding consistency. Frequent group meetings were conducted throughout the coding process to discuss how the codes were being applied and to reconcile any differences. To capture the evolution of life challenges and concerns as experienced by girls and women with TS, participants were divided into the following four according to age: Childhood 7—13 years of age , Adolescence 14—19 years of age , Adulthood 20—39 years of age , and Mature Adulthood 40—59 years of age.
The age division was based upon efforts to distribute participants evenly amongst groups and closely approximates the psychosocial stages of development as forwarded by theorist, Erik Erikson [ Erikson ; Corey ]. The prevalence of each challenge associated with TS was determined by the frequency with which participants in each group cited the various concerns. A total of 97 girls and women with Turner syndrome and 21 parents participated. Table I depicts the demographics of the study population. A majority of participants were Caucasian and ranged from 7—59 years of age. The average age of diagnosis was The majority of the women interviewed had obtained either an undergraduate or graduate degree.
The most common TS karyotype of the women in our study was 45,X. Six women had children, 5 through adoption and 1 as a result of in vitro fertilization IVF. The women in this study underwent neurocognitive and neuropsychiatric testing as part of the NICHD parent study. revealed that women with TS had a higher rate of lifetime depression than the general population [ Cardoso et al. In all four age the girls and women in this study, regardless of their karyotype, most frequently cited infertility as their primary concern associated with TS.
Short stature was the second largest challenge. Interestingly, sexual development and function and health status were, comparatively, only ancillary concerns, yet prevailed over other concerns mentioned by participants during the open-ended questioning. Infertility emerged as the major concern for the majority of our participants. Thirty-six percent of girls aged 7—13 were, according to their parents, distressed upon learning of their inability to become biological mothers. Although many women have adapted to their infertile state, their fertility diagnosis remains a sensitive issue. Table II provides a summary of the sentiments expressed by girls and women with respect to their infertility.
A of adolescents, adults, and mature adults diagnosed between the age of 7 and 13 mentioned that they were devastated upon learning of their infertility. Infertility posed the biggest challenge for this age group, especially once family and friends started having babies. I wish I had the choice. A couple of adults made the distinction between infertility as solely a personal difficulty versus an obstacle that must be overcome by their partners.
And that was just devastating. I mean it was very, very, very, devastating. The majority of women in this age group remained deeply affected by their infertility, feeling they missed out on an important part of being a woman. A minority of mature adults claimed infertility was not a concern since they were either not married, did not want the responsibility of children, or did not feel childbearing was ever a guarantee.
Contrary to initial expectations, girls diagnosed with Turner syndrome during childhood were, in many cases, still deeply affected by their infertility. Parents interviewed on behalf of their young daughters and older study participants reflecting on their childhood diagnoses recalled shattered dreams of motherhood.
Adolescents also cited infertility as either a current or future concern. The inability to bear biological children was the most prevalent and painful challenge endured by most of the adult women interviewed, as they were continually reminded of their infertility as family and friends began to procreate. Although many women from our mature adult sample were beyond childbearing years, the majority of these women remained saddened by their infertility and felt deprived of an important part of womanhood and reproductive choice.
Interestingly, even though the majority of participants embraced adoption and new reproductive technologies as legitimate options, their inability to have a biological child remained, for many, a source of great sadness.
A minority of adults and mature adults, however, specifically mentioned that infertility was not an issue, predominantly because they were neither married nor in long-term relationships. A of women disclosed that their infertility had a ificant impact on how they interacted with men, particularly within intimate relationships.
Recognizing that their diagnosis of infertility would, in most cases, extend to their life partners, questions of when and how to disclose their infertility to their partner, concerns of being accepted despite their diagnosis, and fears of being abandoned as a result of their inability to have children preyed on the minds of these women. Short stature was the second most cited concern. Sixty-one participants mentioned that their height bothered them at some point in their lives.
Another interesting finding was the accuracy with which the girls and women reported their height in the interviews. The majority 29 rounded up their height anywhere from a fraction of an inch to an inch. However, 11 women exaggerated their height by one and a half to four inches. Table III provides a bulleted of the findings addressing concerns with short stature. That can get really boring and tiring. Also, when it comes to, like … dating and stuff.
It might hinder it a little bit. Most either ignored the jibes or fought back, described the banter as playful teasing or maintained they simply do not care what is said. Adult women perceived height either as a functional difficulty or source of social stigmatization. Short stature also concerned the mature adults, as they claimed their height challenged them daily. Ongoing frustrations at rude comments made by children, adults, and even health care providers were also relayed.Sex dating in Turners
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Turner Syndrome: Four Challenges Across the Lifespan