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14 - Psychological care in disorders of sexual differentiation and determination

from Part II - Management of developmental abnormalities of the genital tract

Published online by Cambridge University Press:  04 May 2010

Polly Carmichael
Affiliation:
Department of Psychological Medicine, Great Ormond St Hospital for Children, London, UK
Julie Alderson
Affiliation:
Department of Adolescent Psychology, St James Hospital, Leeds, UK
Adam H. Balen
Affiliation:
Leeds Teaching Hospitals, University Trust
Sarah M. Creighton
Affiliation:
University College London Hospitals
Melanie C. Davies
Affiliation:
University College London
Jane MacDougall
Affiliation:
Addenbrooke's Hospital, Cambridge
Richard Stanhope
Affiliation:
Great Ormond Street Hospital
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Summary

Psychosocial functioning and quality of life are of increasing emphasis in consideration of outcome for people with chronic health conditions. The World Health Organization's assessment of quality of life has six domains, three of which refer to psychosocial outcomes (WHOQOL group, 1995). While few will experience clinically significant psychopathology, children with chronic illness are more likely to have psychosocial problems and a child's illness can impact on the whole family (Drotar and Crawford 1985; Eiser, 1990; Wallander et al., 1989).

Healthcare services for children and adolescents with disorders of sexual differentiation and determination (DSDD) are in part aimed at the prevention of psychopathological responses to diagnosis and treatment. Medical and nursing staff aim to provide healthcare that is designed to be sensitive to patients' psychological needs, but it is acknowledged that specialist psychosocial care should also be available and integrated with the medical care. A clinical psychologist or other applied psychologist in a health setting with experience of DSDD generally provides this service.

The psychologist has a dual role of supporting the family and working with the wider team to ensure that individual child or family needs are incorporated into treatment from the outset. Recognition of the psychological components of healthcare does not represent a presumption of psychological disorder, rather an acknowledgement of the possible impact on the child's psychological development and the wider family adaptation.

Type
Chapter
Information
Paediatric and Adolescent Gynaecology
A Multidisciplinary Approach
, pp. 158 - 178
Publisher: Cambridge University Press
Print publication year: 2004

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References

Alderson J (2000). XY women with androgen insensitivity syndrome (AIS): a qualitative study. Thesis University of Leeds
Alderson, J, Madill, A, Balen, A (2003). Fear of devaluation: understanding the experience of intersexed women with androgen insensitivity syndrome. Br J Health Psychol in pressGoogle Scholar
Alderson P (1993). Children's Consent to Surgery, p. 35. Open University Press Buckingham, UK
American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, 4th edn revised. American Psychiatric Association, Washington DC
Berenbaum, S (1998). How hormones affect behavioral and neural development: introduction to the special issue on gonadal hormones and sex differences in behavior. Dev Neuropsychol 14, 175–196CrossRefGoogle Scholar
Berenbaum, S, Hines, M (1992). Early androgens are related to childhood sex-typed toy preferences. Psychol Sci 3, 203-206CrossRefGoogle Scholar
Berenbaum, S, Snyder, E (1995). Early hormonal influences on childhood sex-typed activity and playmate preferences: implications for the development of sexual orientation. Dev Psychol 31, 31–42CrossRefGoogle Scholar
Blum, R, Garell, D, Hodgman, C (1993). Transition from child-centred to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14, 570–576CrossRefGoogle Scholar
British Association of Paediatric Surgeons (2001). Intersex Surgical Guidelines: Statement of the British Association of Paediatric Surgeons Working Party on the Surgical Management of Children Born with Ambiguous Genitalia. British Association of Paediatric Surgeons, London
British Medical Association and the Law Society (1995). Assessment of mental capacity: guidance for doctors and lawyers. BMA, London
Carmichael, P A, Ransley, P G R (2002). Telling children about a physical intersex condition. Dialog Pediatr Urol 25, 7–8Google Scholar
Collaer, M L, Hines, M (1995). Human behavioral sex differences: a role for gonadal hormones during early development?Psychol Bull 118, 55–107CrossRefGoogle ScholarPubMed
Creighton, S, Alderson, J, Brown, P, Minto, C (2002). Medical photography: ethics consent and the intersex patient. Br J Urol Int 89, 67–72CrossRefGoogle ScholarPubMed
Department of Health (1983). Mental Health Act. The Stationary Office, London
Department of Health (1989). Children Act Section 1(1)(b). The Stationary Office, London
Department of Health (1999). Mental Health Act 1983 Revised Code of Practice. The Stationary Office, London
Department of Health (2001). National Service Framework for Diabetes: Standards. UK Department of Health, London
Diamond, M (1997). Sexual identity and sexual orientation in children born with traumatised or ambiguous genitalia. J Sex Res 34, 199–211CrossRefGoogle Scholar
Diamond, M (1999). Paediatric management of ambiguous and traumatized genitalia. J Urol 162, 1021–1028CrossRefGoogle Scholar
Diamond, M, Sigmundson, H K (1997a). Sex reassignment at birth. Long-term review and clinical implications. Arch Pediatr Adolesc Med 151, 298–304CrossRefGoogle Scholar
Diamond, M, Sigmundson, H K (1997b). Management of intersexuality guidelines for dealing with persons with ambiguous genitalia. Arch Pediatr Adolesc Med 151, 1046–1050CrossRefGoogle Scholar
DiPietro, J A (1981). Rough and tumble play: a function of gender. Dev Psychol 17, 50–58CrossRefGoogle Scholar
Dittman, R W, Kappes, M H, Kappes, M E et al. (1990). Congenital adrenal hyperplasia II: gender-related behavior and attitudes in female salt-wasting and simple-virilizing patients. Psychoneuroendocrinology 15, 421–434CrossRefGoogle Scholar
Dittman, R W, Kappes, M E, Kappes, M H (1992). Sexual behavior in adolescent and adult females with congenital adrenal hyperplasia. Psychoneuroendocrinology 17, 153–170CrossRefGoogle Scholar
Donahue, P K (1987). The diagnosis and treatment of infants with intersex abnormalities. Paediatr Clin North Am 34, 1333–1348CrossRefGoogle Scholar
Dreger A (1998). Hermaphrodites and the Medical Intervention of Sex. Harvard University Press, Cambridge MA
Drotar, D, Crawford, P (1985). Psychological adaptation of siblings of chronically ill children: research and practice implications. J Dev Behav Pediatr 6, 355–362CrossRefGoogle ScholarPubMed
Drotar D, Crawford P, Ganofsky M A (1984). Prevention with chronically ill children. In Prevention of Problems in Childhood: Psychological Research and Applications, Roberts M C, Peterson L, eds., pp. 233–265. Wiley, New York
Edmonds D K (1989). Intersexuality. In Dewhurst's Practical Paediatric and Adolescent Gynaecology, Edmonds D K, ed., pp. 6–26. Butterworths, London
Eiser C (1990). Chronic Childhood Disease: An Introduction to Psychological Theory and Research. Cambridge University Press, Cambridge
Fausto-Sterling, A (1993). The five sexes. The Sciences 33, 20–25CrossRefGoogle Scholar
Fausto-Sterling A (2000). Sexing the Body: Gender Politics and the Construction of Sexuality. Basic Books, New York
Funck-Brentano, I, Costagliola, D, Seibel, N et al. (1997). Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school age children. Arch Pediatr Adolesc Med 151, 978–985CrossRefGoogle ScholarPubMed
Gerharz W (ed.) (1997). Quality of life research in children: Fashion or future? Dialog Pediatr Urol 20, 2–8
Gillick v. West Norfolk and Wisbech Area Health Authority (1986). AC 112
Golombok S, Fivush R (1994). Gender Development. Cambridge University Press, Cambridge, UK
Goodall, J (1991). Helping a child to understand her own testicular feminisation. Lancet 337, 33–35CrossRefGoogle ScholarPubMed
Gooren, M D, Cohen-Kettenis, P T (1991). Development of male gender identity/role and a sexual orientation towards women in a 46 XY subject with an incomplete form of the androgen insensitivity syndrome. Arch Sex Behav 20, 459–470CrossRefGoogle Scholar
Hawker, D S J, Boulton, M J (2000). Twenty years' research on peer victimization and psychosocial maladjustment: a meta-analytic review of cross sectional studies. J Child Psychol Psychiatry 44, 441–455CrossRefGoogle Scholar
Hines, M (1998). Abnormal sexual development and psychosexual issues. Baillières Clin Endocrinol Metab 12, 173–189CrossRefGoogle ScholarPubMed
Hines, M, Ahmed, S F, Fane, B A, Hughes, I A (1998). Gender development and psychological well being in patients with androgen insensitivity syndrome (AIS). Horm Res 50, 116Google Scholar
Imperato-McGinley, J, Peterson, R E, Gautier, T, Sturla, E (1979). Androgens and the evolution of male-gender identity among male pseudohermaphrodites with 5-reductase deficiency. N Engl J Med 300, 1233–1237CrossRefGoogle Scholar
Kessler S J (1998). Lessons from the Intersexed. Rutgers University Press, New Brunswick
Kessler, S J (2002). Questioning assumptions about gender assignment in cases of intersexuality. Dialog Pediatr Urol 25, 3–4Google Scholar
Kind, P, Rosser, R (1997). Quality of life research: clinical relevance and practical value. Dialog Pediatr Urol 20, 2–3Google Scholar
Kipnis, K, Diamond, M (1998). Pediatric ethics and the surgical assignment of sex. J Clin Ethics 9, 398–410Google Scholar
Koocher, G P, McGrath, M L, Gudas, L J (1990). Typologies of nonadherence in cystic fibrosis. J Dev Behav Pediatr 11, 353–358CrossRefGoogle ScholarPubMed
Le Maréchal K (2001). Bringing up an XY girl: parents' experience of having a child with androgen insensitivity syndrome. Thesis, University College London
Lipson, M (1994). Disclosure of diagnosis to children with human immunodeficieny virus or acquired immunodeficiency syndrome. J Dev Behav Pediatr 15(Suppl.), S61–S65CrossRefGoogle ScholarPubMed
Liss, M B (1981). Patterns of toy play: an analysis of sex differences. Sex Roles 7, 1143–1150CrossRefGoogle Scholar
McConaghy, M (1979). Gender permanence and the genital basis of gender: stages in the development of constancy of gender identity. Child Dev 50, 1223–1226CrossRefGoogle Scholar
Maccoby, E E (1988). Gender as a social category. Dev Psychol 24, 755–765CrossRefGoogle Scholar
Maccoby E E, Jacklin C N (1987). Gender segregation in childhood. In Advances in Child Development and Behaviour, Vol. 20, Reese H W, ed., pp 239–287. Academic Press, New York
Melton, L (2001). New perspectives on the management of intersex. Lancet 357, 2110CrossRefGoogle ScholarPubMed
Meyer-Bahlberg, H F (1993). Gender identity development in intersex patients. Child Adolesc Psychiatr Clin North Am 2, 501-512Google Scholar
Meyer-Bahlberg, H F (1994). Intersexuality and the diagnosis of gender identity disorder. Arch Sex Behav 23, 21–40CrossRefGoogle Scholar
Meyer-Bahlberg, H F (1999). Health related quality of life in intersexuality. Acta Paediatr Suppl 428, 114–115CrossRefGoogle Scholar
Meyer-Bahlberg, H F (2002). Gender: aspects and assessment. Dialog Pediatr Urol 25, 2–3Google Scholar
Meyer-Bahlberg, H F, Sandberg, D E, Yager, T J, Dolezal, C L, Ehrhardt, A A (1994a). Questionnaire scales for the assessment of atypical gender development in girls and boys. J Psychol Hum Sex 6, 19–39Google Scholar
Meyer-Bahlburg, H F, Sandberg, D E, Dolezal, C L, Yager, T J (1994b). Gender-related assessment of childhood play. J Abnorm Child Psychol 22, 643–660CrossRefGoogle Scholar
Meyer-Bahlberg, H F, Gruen, R S, New, M I (1996). Gender change from female to male in classical adrenal hyperplasia. Horm Behav 30, 319–332CrossRefGoogle Scholar
Mills J, Cowley R (1986). Therapeutic Metaphors for Children. Brunner/Mazel, New York
Money J (1975). Psychologic counseling: hermaphroditism. In Endocrine and Genetic Diseases of Childhood and Adolescence, 2nd edn, Gardner L I, ed., pp. 609–610. Saunders, Philadelphia, PA
Money J (1994). Sex Errors of the Body and Related Syndromes: A Guide to Counselling Children, Adolescents and their Families, 2nd edn. Brookes, Baltimore, MD
Money J, Ehrhardt A A (1972). Rearing of a Sex-reassigned Normal Male Infant after Traumatic Loss of the Penis: Man and Woman/Boy and Girl. pp. 44–51. John Hopkins University Press. Baltimore MD
Money, J, Hampson, J G, Hampson, J L (1955). Hermaphroditism: recommendations concerning assignment of sex, change of sex and psychologic management. Bull Johns Hopkins Hosp 97, 284–300Google ScholarPubMed
Money, J, Hampson, J G, Hampson, J L (1957). Imprinting and the establishment of gender role. Arch Neurol Psychiatry 77, 333–336CrossRefGoogle ScholarPubMed
Money, J, Schwartz, M, Lewis, V G (1984). Adult erotosexual status and fetal hormonal masculinization and demasculinization: 46 XX congenital virilizing adrenal hyperplasia and 46 XY androgen-insensitivity syndrome compared. Psychoneuroendocrinology 9, 405–414CrossRefGoogle ScholarPubMed
Money, J, Devore, H, Norman, B F (1986). Gender identity and gender transposition: longitudinal outcome of study of 32 male hermaphrodites assigned as girls. J Sex Marital Ther 12, 165–181CrossRefGoogle ScholarPubMed
Pearce, J (1994). Consent to treatment during childhood. The assessment of competence and avoidance conflict. Br J Psychiatry 165, 713–716CrossRefGoogle Scholar
Phornphutkul, C, Fausto-Sterling, A, Gruppuso, P A (2000). Gender self-reassignment in an XY adolescent female born with ambiguous genitalia. Paediatrics 106, 135–136CrossRefGoogle Scholar
Preves, S E (1998). For the sake of the children: destigmatizing intersexuality. J Clin Ethics 9, 411–420Google ScholarPubMed
Reiner, W G (1996). Case study: sex reassignment in a teenage girl. J Am Acad Child Adolesc Psychiatry 35, 799–803CrossRefGoogle Scholar
Royal College of Paediatrics and Child Health (2002). Intercollegiate Adolescent Working Party, March 2002. Royal College of Paediatrics and Child Health, London
Rutter, M (1999). Research and the family justice system: what has been the role of research and what should it be?Newslett Natl Council Fam Proc 15, 2–6Google Scholar
Salmon, G, James, A, Smith, D M (1998). Bullying in schools: self-reported anxiety depression and self-esteem in secondary school children. Br Med J 317, 924–925CrossRefGoogle ScholarPubMed
Schober, J M (1998). Early feminizing genitoplasty or watchful waiting. J Pediatr Adolesc Gynecol 11, 157–159CrossRefGoogle ScholarPubMed
Schober, J M (1999). Quality-of-life studies in patients with ambiguous genitalia. World J Urol 17, 249–252CrossRefGoogle ScholarPubMed
Schober, J M, Carmichael, P A, Hines, M, Ransley, P G (2002). The ultimate challenge of cloacal exstrophy. J Urol 167, 300–304CrossRefGoogle ScholarPubMed
Shaw, M (2001). Competence and consent to treatment in children and adolescents. Adv Psychiatr Treat 7, 50–159CrossRefGoogle Scholar
Slijper, F M, Kamp, H J, Brandenburg, H, Keizer-Schrama, Muinck S M, Drop, S L, Molenaar, J C (1992). Evaluation of psychosexual development of young women with congenital adrenal hyperplasia: a pilot study. J Sex Educ Ther 18, 200–207CrossRefGoogle Scholar
Slijper, F M E, Drop, S L S, Molenaar, J C, Keizer-Schrama, Muinck S M P F, (1998). Long-term psychological evaluation of intersex children. Arch Sex Behav 27, 125–144CrossRefGoogle ScholarPubMed
Slijper, F M E, Frets, P G, Boehman, A L M, Drop, S L S, Niermeijer, M F (2000). Androgen insensitivity syndrome (AIS): emotional reactions of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis. Horm Res 53, 9–15Google ScholarPubMed
Stoller, R (1964). The hermaphroditic identity of hermaphrodites. J Nerv Mental Dis 139, 453CrossRefGoogle ScholarPubMed
Thompson, S K, Bentler, P M (1971). The priority of cues in sex discrimination by children and adults. Develop Psychol 5, 181–185CrossRefGoogle Scholar
Thompson, R J Jr, Gustafson, K E, Hamlett, K, Spock, A (1992). Psychological adjustment of children with cystic fibrosis: the role of child cognitive processes and maternal adjustment. J Pediatr Psychol 17, 741–755CrossRefGoogle ScholarPubMed
Wallander, J L, Varni, J W, Babani, L, Banis, H, Wilcox, K (1989). Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. J Pediatr Psychol 14, 157–173CrossRefGoogle ScholarPubMed
Warne G L (1989). Your Child with Congenital Adrenal Hyperplasia. Royal Children's Hospital, Australia
Warne, G L (1992). The baby who was different. A fairy tale. Matern Child Health159–160Google Scholar
Warne G L (1997). Complete Androgen Insensitivity Syndrome. Royal Children's Hospital, Australia
Warner S (1998). Psychological aspects. In Paediatric and Adolescent Gynaecology, Garden A S, ed., pp 190–214. Arnold, London
Weithorn, L A, Campbell, S B (1982). The competency of children and adolescents to make informed treatment decisions. Child Dev 53, 1589–1598CrossRefGoogle ScholarPubMed
World Health Organization (1992). International Classification of Diseases and Health Related Problems, 10th revision (ICD-10). World Health Organization, Geneva
WHOQOL Group (1995). The World Health Organization Quality of Life Assessment (WHOQOL). (Position paper from the World Health Organization.)Soc Sci Med 41, 1403–1409CrossRef
Zucker, K (2002). Intersexuality and gender identity differentiation. J Pediatr Adolesc Gynecol 15, 3–13CrossRefGoogle ScholarPubMed
Zucker, K, Bradley, S, Sullivan, Lowry C, Kuksis, M, Birkenfield-Adams, A, Mitchell, J N (1993). A gender identity interview for children. J Personality Assess 61, 443–456CrossRefGoogle ScholarPubMed
Zucker, K, Bradley, S, Oliver, G, Blake, J, Fleming, S, Hood, J (1996). Psychosexual development of women with congenital adrenal hyperplasia. Horm Behav 30, 300–318CrossRefGoogle ScholarPubMed

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