Turner syndrome: the patients' view

L.Z.C., Suzigan; Silva, R B Paiva E; S.H.V., Lemos Marini; M.T.M., Baptista; Guerra, Gil; Magna, Luís Alberto; Maciel‐Guerra, Andréa T.

doi:10.2223/1205

Cited by 4 publications

(4 citation statements)

References 16 publications

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“…In other words, the interviewees’ answers may have been biased by social rules considered acceptable so that the girls would look better adapted than they really are. In fact, as it has already been mentioned, TS women may have a tendency to minimize their problems and not to complain about social difficulties, although they would end up showing such difficulties, which suggests an effort to look better and (or) be better adapted (Lagrou et al ., 1998; McCauley et al ., 2001; Suzigan et al ., 2004).…”

Section: Discussionmentioning

confidence: 99%

“…In their study, Lagrou et al (1998) found that most TS women do not have any social, cultural or sports activities and they usually spend most of their time at home. According to Suzigan et al (2004), when TS girls described their daily routine and leisure time, they reported a predominance of individual activities rather than collective activities.…”

Section: Introductionmentioning

confidence: 99%

“…They usually do not complain about social difficulties although such difficulties are visible. This fact, according to some authors, suggests an attempt by TS women to show that they are well and better adapted than they really are (Lagrou et al ., 1998; McCauley et al ., 2001; Suzigan et al ., 2004). High scores in the so‐called “lie scale” or social desirability were found by McCauley et al (2001) as an evidence of a tendency to give socially acceptable answers in order to minimize symptoms and problems.…”

Section: Introductionmentioning

confidence: 99%

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Social skills in women with Turner Syndrome

Suzigan¹,

Silva²,

Guerra‐Júnior³

et al. 2011

Scandinavian J Psychology

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The aim of this study was to evaluate the performance of a group of women with Turner Syndrome (TS) in interpersonal situations where several social skills were required, and to compare the results with unaffected sisters. Fifty-two TS females aged 15-35 years and 33 sisters aged 16-43 were evaluated using Del-Prette Social Skills Inventory (SSI) and individual interviews. Thirty mothers to subjects and sisters answered questionnaires. It was found that TS girls' performance in SSI was as good as their sisters' and even better in meeting new people and facing unknown situations (p = 0.020). Older TS women scored better than younger ones, differently from their sisters. There were no significant correlations between total score of TS women and their age at diagnosis, time of follow-up and height z-score. Mothers reported having more problems with TS girls than with sisters. Although TS girls demonstrated having social difficulties, just a few of them spontaneously complained about interpersonal problems in the interview. Results suggest that social difficulties may not cause TS girls major problems nor make them unhappy with their social lives, and/or TS girls may not be able to perceive their own difficulties. Good performance in SSI also suggests that TS girls can identify adequate skills in presented situations and answer in a way to obtain good scores, but they may not necessarily use their skills due to other factors like anxiety and shyness. They may also have a tendency to answer SSI in a way they consider socially desirable, masking their real difficulties.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Social skills in women with Turner Syndrome

Suzigan¹,

Silva²,

Guerra‐Júnior³

et al. 2011

Scandinavian J Psychology

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“…Both informants subscribe to the concept of self esteem. In some studies, adolescents with TS have reported similar challenges to instigating relationships with men (Suzigan et al, 2004), which can lower self esteem (Sybert & McCauley, 2004;McCauley et al, 2001;Killic et al, 2005). Within pre-existing literature, again links with anxiety and avoidance are not discussed.…”

Section: Fear Of Ending Up Alonementioning

confidence: 99%

Anxiety as a cause of attachment avoidance in women with Turner Syndrome

Clauson

Martin

Watt

2012

Sexual and Relationship Therapy

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Anxiety as a cause of attachment avoidance in women with Turner Syndrome. Sexual and Relationship Therapy. 27(4): 377-390. http://dx. ABSTRACTWorking models of attachment are internal depictions of self relative to others and have been described in terms of two dimensions: (1) attachment avoidance, and (2) attachment anxiety. An exploratory qualitative study was carried out to build understandings about women with Turner Syndrome (TS) and the psychosocial impact their infertility has upon salient relationships. In one-to-one semi-structured interviews five women with TS were asked: How do you perceive your womanhood and infertility status has affected your relationships with the: (1) opposite sex, (2) siblings, and (3) peers. In opposite sex relationships, infertility status was found to arouse fear of ending up alone and anxiety over engaging in romantic relationships. In sibling relationships, jealousy was expressed in relation to disparity with sister(s) more natural maturation to womanhood, and within peer relationships consequences from divulging infertility status created attachment avoidance with friends. Further investigation in this area is merited.

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‘I'm still a woman’: A qualitative study on sexuality in heterosexual women with Turner Syndrome

Granero‐Molina

Román²,

Jiménez-Lasserrotte

et al. 2023

Journal of Clinical Nursing

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Aim and objectivesThe aim of this study was to describe and understand how heterosexual women with Turner Syndrome experience sexuality.BackgroundTurner Syndrome is a genetic condition that is the result of one of the X chromosomes missing or partially missing, and it affects women of all ages. Turner Syndrome may lead to psychological, relational and sex life disorders.DesignThis is a qualitative study, and the COREQ checklist was employed to report on the current study.MethodsThe study was conducted in a region of southern Spain. Convenience and snowball sampling were used to recruit 18 women, aged 22–51 years, who had been diagnosed with Turner Syndrome. Participants' experiences were explored through semi‐structured interviews between January and May 2021. Thematic analysis was used for data analysis.ResultsThree main themes and eight sub‐themes emerge from the data analysis: (1) Sexuality linked to corporeality, with the sub‐themes: ‘Discovering that your body is different’, ‘Social stigma limits one's sex life’ and ‘Fear of penetration surpresses sexual desire’. (2) Adapting one's sexuality to Turner Syndrome, with the sub‐themes: ‘Feeling like a woman’ and ‘Suffering from and adapting to comorbidities’. (3) When infertility overshadows sexuality, with the sub‐themes: ‘Prolonging childhood by ignoring sexuality’, ‘Fertility treatment: always a possibility’ and ‘Lack of specialised professional knowledge’.ConclusionHeterosexual women with Turner Syndrome suffer from sexual problems, delayed diagnosis and treatment, and lack of information. Unawareness and relational problems may also lead to scarce and late sexual relations, jealousy and a fear of being left. The women with Turner Syndrome refer to little self‐exploration or masturbation as well as a fear of penetration.Relevance to clinical practiceUnderstanding the experiences of sexuality in heterosexual women with Turner Syndrome is a challenge for clinical nurses, who could provide quality care to these women in contextualised services.

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Turner syndrome: the patients' view

Cited by 4 publications

References 16 publications

Social skills in women with Turner Syndrome

Social skills in women with Turner Syndrome

Anxiety as a cause of attachment avoidance in women with Turner Syndrome

‘I'm still a woman’: A qualitative study on sexuality in heterosexual women with Turner Syndrome

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