Psychological care in disorders of sexual differentiation and determination

doi:10.1017/CBO9780511527036.015

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 and

Edited by

Jane MacDougall and

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

Book contents

Get access

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.

Information

Type: Chapter
Information: Paediatric and Adolescent Gynaecology
A Multidisciplinary Approach
, pp. 158 - 178

DOI: https://doi.org/10.1017/CBO9780511527036.015 [Opens in a new window]

Publisher: Cambridge University Press

Print publication year: 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Book purchase

Temporarily unavailable

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, 175–196CrossRef Google Scholar

Berenbaum, S, Hines, M (1992). Early androgens are related to childhood sex-typed toy preferences. Psychol Sci 3, 203-206CrossRef Google 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, 31–42CrossRef Google 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, 570–576CrossRef Google 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, 55–107CrossRef Google Scholar PubMed

Creighton, S, Alderson, J, Brown, P, Minto, C (2002). Medical photography: ethics consent and the intersex patient. Br J Urol Int 89, 67–72CrossRef Google Scholar PubMed

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, 199–211CrossRef Google Scholar

Diamond, M (1999). Paediatric management of ambiguous and traumatized genitalia. J Urol 162, 1021–1028CrossRef Google Scholar

Diamond, M, Sigmundson, H K (1997a). Sex reassignment at birth. Long-term review and clinical implications. Arch Pediatr Adolesc Med 151, 298–304CrossRef Google Scholar

Diamond, M, Sigmundson, H K (1997b). Management of intersexuality guidelines for dealing with persons with ambiguous genitalia. Arch Pediatr Adolesc Med 151, 1046–1050CrossRef Google Scholar

DiPietro, J A (1981). Rough and tumble play: a function of gender. Dev Psychol 17, 50–58CrossRef Google 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, 421–434CrossRef Google Scholar

Dittman, R W, Kappes, M E, Kappes, M H (1992). Sexual behavior in adolescent and adult females with congenital adrenal hyperplasia. Psychoneuroendocrinology 17, 153–170CrossRef Google Scholar

Donahue, P K (1987). The diagnosis and treatment of infants with intersex abnormalities. Paediatr Clin North Am 34, 1333–1348CrossRef Google 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, 355–362CrossRef Google Scholar PubMed

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, 20–25CrossRef Google 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, 978–985CrossRef Google Scholar PubMed

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, 33–35CrossRef Google Scholar PubMed

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, 459–470CrossRef Google 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, 441–455CrossRef Google Scholar

Hines, M (1998). Abnormal sexual development and psychosexual issues. Baillières Clin Endocrinol Metab 12, 173–189CrossRef Google Scholar PubMed

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, 1233–1237CrossRef Google 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, 353–358CrossRef Google Scholar PubMed

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–S65CrossRef Google Scholar PubMed

Liss, M B (1981). Patterns of toy play: an analysis of sex differences. Sex Roles 7, 1143–1150CrossRef Google Scholar

McConaghy, M (1979). Gender permanence and the genital basis of gender: stages in the development of constancy of gender identity. Child Dev 50, 1223–1226CrossRef Google Scholar

Maccoby, E E (1988). Gender as a social category. Dev Psychol 24, 755–765CrossRef Google 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, 2110CrossRef Google Scholar PubMed

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, 21–40CrossRef Google Scholar

Meyer-Bahlberg, H F (1999). Health related quality of life in intersexuality. Acta Paediatr Suppl 428, 114–115CrossRef Google 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, 643–660CrossRef Google 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, 319–332CrossRef Google 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 Scholar PubMed

Money, J, Hampson, J G, Hampson, J L (1957). Imprinting and the establishment of gender role. Arch Neurol Psychiatry 77, 333–336CrossRef Google Scholar PubMed

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, 405–414CrossRef Google Scholar PubMed

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, 165–181CrossRef Google Scholar PubMed

Pearce, J (1994). Consent to treatment during childhood. The assessment of competence and avoidance conflict. Br J Psychiatry 165, 713–716CrossRef Google Scholar

Phornphutkul, C, Fausto-Sterling, A, Gruppuso, P A (2000). Gender self-reassignment in an XY adolescent female born with ambiguous genitalia. Paediatrics 106, 135–136CrossRef Google Scholar

Preves, S E (1998). For the sake of the children: destigmatizing intersexuality. J Clin Ethics 9, 411–420Google Scholar PubMed

Reiner, W G (1996). Case study: sex reassignment in a teenage girl. J Am Acad Child Adolesc Psychiatry 35, 799–803CrossRef Google 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, 924–925CrossRef Google Scholar PubMed

Schober, J M (1998). Early feminizing genitoplasty or watchful waiting. J Pediatr Adolesc Gynecol 11, 157–159CrossRef Google Scholar PubMed

Schober, J M (1999). Quality-of-life studies in patients with ambiguous genitalia. World J Urol 17, 249–252CrossRef Google Scholar PubMed

Schober, J M, Carmichael, P A, Hines, M, Ransley, P G (2002). The ultimate challenge of cloacal exstrophy. J Urol 167, 300–304CrossRef Google Scholar PubMed

Shaw, M (2001). Competence and consent to treatment in children and adolescents. Adv Psychiatr Treat 7, 50–159CrossRef Google 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, 200–207CrossRef Google 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, 125–144CrossRef Google Scholar PubMed

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 Scholar PubMed

Stoller, R (1964). The hermaphroditic identity of hermaphrodites. J Nerv Mental Dis 139, 453CrossRef Google Scholar PubMed

Thompson, S K, Bentler, P M (1971). The priority of cues in sex discrimination by children and adults. Develop Psychol 5, 181–185CrossRef Google 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, 741–755CrossRef Google Scholar PubMed

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, 157–173CrossRef Google Scholar PubMed

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, 1589–1598CrossRef Google Scholar PubMed

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, 3–13CrossRef Google Scholar PubMed

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, 443–456CrossRef Google Scholar PubMed

Zucker, K, Bradley, S, Oliver, G, Blake, J, Fleming, S, Hood, J (1996). Psychosexual development of women with congenital adrenal hyperplasia. Horm Behav 30, 300–318CrossRef Google Scholar PubMed

Accessibility standard: Unknown

Why this information is here

This section outlines the accessibility features of this content - including support for screen readers, full keyboard navigation and high-contrast display options. This may not be relevant for you.

Accessibility Information

Accessibility compliance for the PDF of this chapter is currently unknown and may be updated in the future.