Experiences of social interaction in young women with Turner syndrome: A qualitative study.
Turner syndrome
experiences of socialization
female autism
sex chromosome aneuploidy
social competence
social skills
Journal
Child: care, health and development
ISSN: 1365-2214
Titre abrégé: Child Care Health Dev
Pays: England
ID NLM: 7602632
Informations de publication
Date de publication:
01 2020
01 2020
Historique:
received:
12
06
2019
accepted:
30
06
2019
pubmed:
20
7
2019
medline:
23
7
2021
entrez:
20
7
2019
Statut:
ppublish
Résumé
Turner Syndrome (TS; 45,X) is a sex chromosome aneuploidy associated with deficits in social interaction, for which clinical care guidelines have recently recommended trialling a social skills training intervention. The present study aimed to gather preliminary evidence to support a training programme for young women. Semi-structured interviews and psychometric questionnaires about social ability were administered to young women with TS aged 16 to 25 years old (n=17) and their parents (n=20). Interview transcripts were analysed using thematic analysis. Although young women with TS experienced a "wide range of social competencies," they attributed social challenges to "personal and contextual factors." The magnitude of these challenges to social integration intensified during adolescence. They felt increasingly "out of sync" with their peers. They also considered their social abilities to be better than their parents did; on a scale of autistic traits (rated by parents), half had mild to severe autistic traits. Most expressed interest in taking part in a social skills programme. Young women with TS are aware they experience difficulties in social communication, and they express interest in improving their social skills. Accordingly, social skills training during adolescence would be welcomed by them and their families. Any intervention should take account of their feelings of social dislocation arising from hearing difficulties together with limited recognition, and slow processing, of social cues.
Sections du résumé
BACKGROUND
Turner Syndrome (TS; 45,X) is a sex chromosome aneuploidy associated with deficits in social interaction, for which clinical care guidelines have recently recommended trialling a social skills training intervention. The present study aimed to gather preliminary evidence to support a training programme for young women.
METHODS
Semi-structured interviews and psychometric questionnaires about social ability were administered to young women with TS aged 16 to 25 years old (n=17) and their parents (n=20). Interview transcripts were analysed using thematic analysis.
RESULTS
Although young women with TS experienced a "wide range of social competencies," they attributed social challenges to "personal and contextual factors." The magnitude of these challenges to social integration intensified during adolescence. They felt increasingly "out of sync" with their peers. They also considered their social abilities to be better than their parents did; on a scale of autistic traits (rated by parents), half had mild to severe autistic traits. Most expressed interest in taking part in a social skills programme.
CONCLUSION
Young women with TS are aware they experience difficulties in social communication, and they express interest in improving their social skills. Accordingly, social skills training during adolescence would be welcomed by them and their families. Any intervention should take account of their feelings of social dislocation arising from hearing difficulties together with limited recognition, and slow processing, of social cues.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
46-55Informations de copyright
© 2019 John Wiley & Sons Ltd.
Références
Barker, C., & Pistrang, N. (2005). Quality criteria under methodological pluralism: Implications for conducting and evaluating research. American Journal of Community Psychology, 35(3-4), 201-212. https://doi.org/10.1007/s10464-005-3398-y
Bauminger, N., & Kasari, C. (2000). Loneliness and friendship in high-functioning children with autism. Child Development. WileySociety for Research in Child Development.. https://doi.org/10.2307/1132001
Berndt, T. (1999). Friends' influence on children's adjustment to school (pp. 85-108).
Bölte, S., Westerwald, E., Holtmann, M., Freitag, C., & Poustka, F. (2011). Autistic traits and autism spectrum disorders: The clinical validity of two measures presuming a continuum of social communication skills. Journal of Autism and Developmental Disorders, 41(1), 66-72. https://doi.org/10.1007/s10803-010-1024-9
Boman, U. W., Möllet, A., & Albertsson-Wikland, K. (1998). Psychological aspects of Turner syndrome. Journal of Psychosomatic Obstetrics & Gynecology, 19(1), 1-1, 18. https://doi.org/10.3109/01674829809044216
Braun, V., & Clarke, V. (2006). Qualitative Research in Psychology Using thematic analysis in psychology Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
Cardoso, G., Daly, R. J., Haq, N. A., Hanton, L., Rubinow, D. R., Bondy, C. A., & Schmidt, P. J. (2004). Current and lifetime psychiatric illness in women with Turner syndrome. Gynecological Endocrinology, 19(6), 313-319. https://doi.org/10.1080/09513590400021227
Chadwick, P. M., Smyth, A., & Liao, L.-M. (2014). Improving self-esteem in women diagnosed with Turner syndrome: Results of a pilot intervention. Journal of Pediatric and Adolescent Gynecology, 27(3), 129-132. https://doi.org/10.1016/j.jpag.2013.09.004
Coie, J., Terry, R., Lenox, K., Lochman, J., & Hyman, C. (1995). Childhood peer rejection and aggression as predictors of stable patterns of adolescent disorder. Development and Psychopathology, 7(04), 697-713. https://doi.org/10.1017/S0954579400006799
Constantino, J., & Gruber, C. (2012). Social responsiveness scale (SRS). Retrieved from http://www.kenniscentrum-kjp.nl/wp-content/uploads/2018/04/Social-Responsiveness-Scale-SRS.pdf
Creswell, C. S., & Skuse, D. H. (1999). Autism in association with Turner syndrome: Genetic implications for male vulnerability to pervasive developmental disorders. Neurocase, 5(6), 511-518. https://doi.org/10.1080/13554799908402746
Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys' world: Investigating the experiences of girls with autism spectrum disorders during adolescence. Journal of Autism and Developmental Disorders., 44, 1261-1274. https://doi.org/10.1007/s10803-013-1985-6
Elliott, S. N., Malecki, C. K., & Demaray, M. K. (2001). New directions in social skills assessment and intervention for elementary and middle school students. Exceptionality, 9(1-2), 19-32. https://doi.org/10.1080/09362835.2001.9666989
Goodman, A., Lamping, D. L., & Ploubidis, G. B. (2010). When to use broader internalising and externalising subscales instead of the hypothesised five subscales on the Strengths and Difficulties Questionnaire (SDQ): Data from British Parents, Teachers and Children. Journal of Abnormal Child Psychology, 38(8), 1179-1191. https://doi.org/10.1007/s10802-010-9434-x
Gravholt, C. H., Andersen, N. H., Conway, G. S., Dekkers, O. M., Geffner, M. E., Klein, K. O., … International Turner Syndrome Consensus Group (2017). Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2016 Cincinnati International Turner Syndrome Meeting. European Journal of Endocrinology, 177(3), 1-70. https://doi.org/10.1530/EJE-17-0430
Hong, D. S., Dunkin, B., & Reiss, A. L. (2011). Psychosocial functioning and social cognitive processing in girls with Turner syndrome. Journal of Developmental and Behavioral Pediatrics: JDBP, 32(7), 512-520. https://doi.org/10.1097/DBP.0b013e3182255301
Hong, D. S., & Reiss, A. L. (2012). Cognition and behavior in Turner syndrome: A brief review. Pediatric Endocrinology Reviews: PER, 9 Suppl 2(0 2), 710-712. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22946281
Jacobs, P., Dalton, P., James, R., Mosse, K., Power, M., Robinson, D., & Skuse, D. (1997). Turner syndrome: A cytogenetic and molecular study. Annals of Human Genetics, 61(6), 471-483. https://doi.org/10.1017/S0003480097006507
Jamison, T. R., & Schuttler, J. O. (2017). Overview and preliminary evidence for a social skills and self-care curriculum for adolescent females with autism: The girls night out model. Journal of Autism and Developmental Disorders, 47(1), 110-125. https://doi.org/10.1007/s10803-016-2939-6
Kesler, S. R. (2007). Turner syndrome. Child and Adolescent Psychiatric Clinics of North America, 16(3), 709-722. https://doi.org/10.1016/j.chc.2007.02.004
Knickmeyer, R. C. (2012). Turner syndrome: advances in understanding altered cognition, brain structure and function. Current Opinion in Neurology, 25(2), 144-149. https://doi.org/10.1097/WCO.0b013e3283515e9e
Lesniak-Karpiak, K., Mazzocco, M. M. M., & Ross, J. L. (2003). Behavioral assessment of social anxiety in females with Turner or fragile X syndrome. Journal of Autism and Developmental Disorders, 33(1), 55-67. https://doi.org/10.1023/A:1022230504787
Mccauley, E., Feuillan, P., Kushner, H., Ross, J. L., & University, T. J. (2001). Psychosocial development in adolescents with Turner syndrome. Journal of Developmental & Behavioral Pediatrics, 22(6), 360-365. Retrieved from https://insights.ovid.com/pubmed?pmid = 11773800
McCauley, E., Kay, T., Ito, J., & Treder, R. (1987). The Turner syndrome: Cognitive deficits, affective discrimination, and behavior problems. Child Development, 58(2), 464-473. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/3829787
McCauley, E., Ross, J. L., Kushner, H., & Cutler, G. (1995). Self-esteem and behavior in girls with Turner syndrome. Journal of Developmental and Behavioral Pediatrics: JDBP, 16(2), 82-88. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/7790519
McLennan, J. D., Lord, C., & Schopler, E. (1993). Sex differences in higher functioning people with autism. Journal of Autism and Developmental Disorders, 23(2), 217-227. https://doi.org/10.1007/BF01046216
Nichols, S. (2009). Girls growing up on the autism specturm: What parents and professionals should know about the pre-teen and teenage years. Jessica Kingley Publishers. Retrieved from https://books.google.com/books?hl = en&lr = &id = xRMQBQAAQBAJ&oi = fnd&pg = PP1&ots = egwmjeQFWC&sig = lGe71M3STQLENmY4pKjMyQe6i1c
Office National Statistics. (2015). English indices of deprivation 2015 - GOV.UK. Retrieved December 5, 2018, from https://www.gov.uk/government/statistics/english-indices-of-deprivation-2015
Parker, J. G., Rubin, K. H., Erath, S. A., Wojslawowicz, J. C., & Buskirk, A. A. (2015). Peer relationships, child development, and adjustment: A developmental psychopathology perspective. In Developmental Psychopathology (pp. 419-493). Hoboken, NJ, USA: John Wiley & Sons, Inc. https://doi.org/10.1002/9780470939383.ch12
Poland, B. D. (2001). Transcription quality. Handbook of Interview Research: Context & Method, 971. https://doi.org/10.4135/9781412984492
Reimann, G. E., Bernad Perman, M. M., Ho, P.-S., Parks, R. A., & Comis, L. E. (2018). Psychosocial characteristics of women with a delayed diagnosis of Turner syndrome. The Journal of Pediatrics., 199, 206-211. https://doi.org/10.1016/J.JPEDS.2018.03.058
Roff, M., Sells, S. B., & Golden, M. (1972). Social adjustment and personality development in children. University of Minnesota Press. Retrieved from. https://muse.jhu.edu/book/32408
Ross, J. L., Feuillan, P., Kushner, H., Roeltgen, D., & Cutler, G. B. (1997). Absence of growth hormone effects on cognitive function in girls with Turner syndrome. The Journal of Clinical Endocrinology & Metabolism, 82(6), 1814-1817. https://doi.org/10.1210/jcem.82.6.4003
Rovet, J., & Ireland, L. (1994). Behavioral phenotype in children with Turner syndrome. Journal of Pediatric Psychology, 19(6), 779-790. Retrieved from. https://academic.oup.com/jpepsy/article-abstract/19/6/779/904640, https://doi.org/10.1093/jpepsy/19.6.779
Saad, K., Abdelrahman, A. A., Abdel-Raheem, Y. F., Othman, E. R., Badry, R., Othman, H. A. K., & Sobhy, K. M. (2014). Turner syndrome: Review of clinical, neuropsychiatric, and EEG status: An experience of tertiary center. Acta Neurologica Belgica, 114(1), 1-9. https://doi.org/10.1007/s13760-013-0264-9
Schmidt, P. J., Cardoso, G. M. P., Ross, J. L., Haq, N., Rubinow, D. R., & Bondy, C. A. (2006). Shyness, social anxiety, and impaired self-esteem in Turner syndrome and premature ovarian failure. JAMA, 295(12), 1373. https://doi.org/10.1001/jama.295.12.1374
Sedgewick, F., Hill, V., Yates, R., Pickering, L., & Pellicano, E. (2016). Gender differences in the social motivation and friendship experiences of autistic and non-autistic adolescents. Journal of Autism and Developmental Disorders., 46, 1297-1306. https://doi.org/10.1007/s10803-015-2669-1
Sim, J., Saunders, B., Waterfield, J., & Kingstone, T. (2018). Can sample size in qualitative research be determined a priori? International Journal of Social Research Methodology, 21(5), 619-634. https://doi.org/10.1080/13645579.2018.1454643
Skuse, D., Lawrence, K., & Tang, J. (2005). Measuring social-cognitive functions in children with somatotropic axis dysfunction. Hormone Research in Paediatrics, 64(3), 73-82. https://doi.org/10.1159/000089321
Skuse, D. H. (2009). Turner - Know your body! (C. Gravholt, Ed.). Gothenburg: Novo Nordisk.
Smith, J. A. (1995). Semi-structured interviewing and qualitative analysis. In Rethinking Methods in Psychology (pp. 10-26). London: SAGE Publications Ltd. https://doi.org/10.4135/9781446221792.n2
Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders. Journal of Autism and Developmental Disorders., 42, 48-59. https://doi.org/10.1007/s10803-011-1215-z
Spence, S. H. (1995). Social skills training: Enhancing social competence with children and adolescents. Nfer-Nelson.
Spence, S. H. (2003). Social skills training with children and young people: Theory, evidence and practice. Child and Adolescent Mental Health, 8(2), 84-96. https://doi.org/10.1111/1475-3588.00051
Suzigan, L. Z., De Paiva, E., Silva, R. B., Guerra-Júnior, G. I., Marini, S. H., & Maciel-Guerra, A. T. (2011). Social skills in women with Turner syndrome. Scandinavian Journal of Psychology, 52(5), 440-447. https://doi.org/10.1111/j.1467-9450.2011.00887.x
Wolstencroft, J., & Skuse, D. (2018). Social skills and relationships in Turner syndrome. Current Opinion in Psychiatry, 1, 85-91. https://doi.org/10.1097/YCO.0000000000000472