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7b - Adolescence and emerging adulthood in individuals with spina bifida: a developmental neuropsychological perspective

from Section II - Disorders

Published online by Cambridge University Press:  07 May 2010

By
Kathy Zebracki ,
Michael Zaccariello ,
Frank Zelko  and
Grayson N. Holmbeck
Edited by
Jacobus Donders  and
Scott J. Hunter
Jacobus Donders
Affiliation:
Mary Free Bed Rehabilitation Hospital
Scott J. Hunter
Affiliation:
University of Chicago
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Summary

Introduction

Adolescence and early adulthood are transitional periods characterized by numerous biological, psychological, cognitive, and social changes [1, 2]. More changes are seen in adolescence than in any other period of development except infancy. The late teens through twenties are marked by profound change, exploration of possible life directions, and decision-making that has enduring implications [1]. “Change” is the defining construct for these developmental periods and is particularly salient in individuals with chronic health conditions (CHC).

Spina bifida myelomeningocele (SBM) is a prototypical example of a CHC with core neurological features (Table 7b.1) and diverse complications (Table 7b.2) impacting development and outcome. Readers are referred to the previous chapter for details regarding the etiology, features, and clinical course of SBM. Individuals with SBM experience not only typical ongoing challenges of adolescence and adult development, but also unique changes owing to their health condition. Both normative and illness-specific changes occur within a larger environmental context that itself undergoes transformation over time. Individuals with SBM also face health system discontinuities such as the transition from pediatric medical care to adult care, and the transition from parent-controlled health care to self-management.

We begin this chapter with conceptual frameworks for considering the critical developmental milestones of adolescence and emerging adulthood, and a discussion of the interplay between the developmental issues of these periods and the experience of a CHC. Second, we consider major empirical findings relevant to SBM in adolescence and adulthood.

Type
Chapter
Information
Principles and Practice of Lifespan Developmental Neuropsychology , pp. 183 - 194
Publisher: Cambridge University Press
Print publication year: 2010

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References

Arnett, JJ. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 2000;55:469–80.CrossRefGoogle ScholarPubMed
Williams, PG, Holmbeck, GN, Greenley, RN. Adolescent health psychology. J Consult Clin Psychol 2002;70:828–42.CrossRefGoogle ScholarPubMed
Holmbeck, GN, Shapera, WE. Research methods with adolescents. In Kendall, PC, Butcher, JN, Holmbeck, GN, eds. Handbook of Research Methods in Clinical Psychology, 2nd edn. New York: Wiley; 1999: 634–61.Google Scholar
Brooks-Gunn, J, Reiter, EO. The role of pubertal processes. In Feldman, SS, Elliott, GR, eds. At the Threshold: The Developing Adolescent. Cambridge: Harvard University Press; 1990: 16–53.Google Scholar
Paikoff, RL, Brooks-Gunn, J. Do parent-child relationships change during puberty? Psychol Bull 1991;110:47–66.CrossRefGoogle ScholarPubMed
Blum, R. Chronic illness and disability in adolescence. J Adolesc Health 1992;13:364–8.CrossRefGoogle ScholarPubMed
Wells, T, Sandefur, GD, Hogan, DP. What happens after the high school years among young persons with disabilities? Soc Forces 2003;82:803–32.CrossRefGoogle Scholar
Greca, AM, Bearman, KJ, Moore, H. Peer relations of youth with pediatric conditions and health risks: promoting social support and healthy lifestyles. Dev Behav Pediatr 2002;23:271–80.CrossRefGoogle ScholarPubMed
Menkes, JH, Sarnet, HB, Flores-Sarnet, L. Malformations of the nervous system. In Menkes, JH, Sarnet, HB, Bernard, ML, eds. Child Neurology, 7th edn. Philadelphia: Lippincott Williams & Wilkins; 2006: 287–302.Google Scholar
Del Bigio, MR. Neuropathological changes caused by hydrocephalus. Acta Neuropathologica 1993:85:573–85.CrossRefGoogle ScholarPubMed
Lawrenson, R, Wyndaele, JJ, Vlachonikolis, I, et al. Renal failure in patients with neurogenic lower urinary tract dysfunction. Neuroepidemiology 2001;20:138–43.CrossRefGoogle ScholarPubMed
Dennis, M, Landry, SH, Barnes, M, et al. A model of neurocognitive function in spina bifida over the life span. J Int Neuropsychol Soc 2006;12:285–96.CrossRefGoogle ScholarPubMed
Mahone, EM, Zabel, TA, Levey, E, et al. Parent and self-report ratings of executive function with myelomeningocele and hydrocephalus. Child Neuropsychol 2002;8:258–70.CrossRefGoogle ScholarPubMed
Royall, DR, Lauterbach, EC, Cummings, JL, et al. Executive control function: a review of its promise and research. J Neuropsychiatry Clinl Neurosci 2002;14:377–405.CrossRefGoogle Scholar
Fletcher, JM, Bohan, TP, Brandt, ME, et al. Morphometric evaluation of the hydrocephalic brain: relationship with cognitive development. Childs Nerv Syst 1996;12:192–99.CrossRefGoogle Scholar
Loss, N, Yeates, KO, Enrile, BG. Attention in children with myelomeningocele. Child Neuropsychol 1998;4:7–20.CrossRefGoogle Scholar
Dennis, M, Hendrick, EB, Hoffman, HJ, et al. The language of hydrocephalic children. J Clin Exp Neuropsychol 1987;9:593–621.CrossRefGoogle ScholarPubMed
Tew, B. The “cocktail party syndrome” in children with hydrocephalus and spina bifida. Br J Dis Comm 1979;14:89–101.CrossRefGoogle ScholarPubMed
Brookshire, BL, Fletcher, JM., Bohan, TP, et al. Specific language deficiencies in children with early onset hydrocephalus. Child Neuropsychol 1995;1:106–17.CrossRefGoogle Scholar
Fletcher, JM, Brookshire, BL, Bohan, TP, et al. Early hydrocephalus. In Rourke, BP, ed. Syndrome of Nonverbal Learning Disabilities: Neurodevelopmental Manifestations. New York: Guilford Press; 1995: 206–36.Google Scholar
Dennis, M, Rogers, T, Barnes, MA. Children with spina bifida perceive visual illusions but not multistable figures. Brain Cogn 2002;46:108–13.CrossRefGoogle Scholar
Dennis, M, Jewell, D, Drake, J, et al. Prospective, declarative, and nondeclarative memory in young adults with spina bifida. J Int Neuropsychol Soc 2007;13:312–23.CrossRefGoogle ScholarPubMed
Zola-Morgan, S, Squire, LR. Neuroanatomy of memory. Annu Rev Sci 1993;16:547–63.Google Scholar
Barnes, M, Dennis, M, Hetherington, R. Reading and writing skills in young adults with spina bifida and hydrocephalus. J Int Neuropsychol Soc 2004;10:655–63.CrossRefGoogle ScholarPubMed
Dennis, M, Barnes, M. Math and numeracy in young adults with spina bifida and hydrocephalus. Dev Neuropsychol 2002;21:141–55.CrossRefGoogle ScholarPubMed
Fletcher, JM, Copeland, K, Frederick, JA, et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. J Neurosurg 2005;102:268–79.Google ScholarPubMed
Hetherington, R, Dennis, M, Barnes, M, et al. Functional outcome in young adults with spina bifida and hydrocephalus. Childs Nerv Syst 2006;22:117–24.CrossRefGoogle ScholarPubMed
Holmbeck, GN, Westhoven, VC, Shapera, W, et al. A multi-method, multi-informant, and multi-dimensional perspective on psychosocial adjustment in pre-adolescents with spina bifida. J Consult Clin Psychol 2003;71:782–96CrossRefGoogle Scholar
Borjeson, MC, Lagergren, J. Life conditions of adolescents with myelomeningocele. Dev Med Child Neurol 1990;32:698–706.CrossRefGoogle ScholarPubMed
Wolman, C, Basco, . Factors influencing self-esteem and self-consciousness in adolescents with spina bifida. J Adolesc Health 1994;15:543–48.CrossRefGoogle ScholarPubMed
Friedman, D, Holmbeck, GN, Jandasek, B, et al. Parent functioning in families of preadolescents with spina bifida: longitudinal implications for child adjustment. J Fam Psychol 2004;18:609–19.CrossRefGoogle ScholarPubMed
Holmbeck, GN, Greenley, RN, Coakley, RM. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions.J Dev Behav Pediatr 2006;27:249–77.CrossRefGoogle ScholarPubMed
Anderson, BJ, Brackett, J, Ho, J, et al. An intervention to promote family teamwork in diabetes management tasks: relationships among parental involvement, adherence to blood glucose monitoring, and glycemic control in young adolescents with type 1 diabetes. In: Drotar, D, ed. Promoting Adherence to Medical Treatment in Chronic Childhood Illness: Concepts, Methods, and Interventions. Mahwah, NJ: Lawrence Erlbaum; 2000: 347–65.Google Scholar
Wysocki, T, Taylor, A, Hough, BS, et al. Deviation from developmentally appropriate self-care autonomy. Diabetes Care 1996;19:119–25.CrossRefGoogle ScholarPubMed
Coyne, JC, Anderson, BJ. The “psychosomatic family” reconsidered: diabetes in context. J Marital Fam Ther 1988;14:113–23.CrossRefGoogle Scholar
Parker, JG, Asher, SR. Peer relations and later personal adjustment: are low-accepted children at risk? Psychol Bull 1987;102:357–89.CrossRefGoogle ScholarPubMed
Fuggle, P, Shand, PA, Gill, LJ, et al. Pain, quality of life, and coping in sickle cell disease. Arch Dis Child 1996;75:199–203.CrossRefGoogle ScholarPubMed
LaGreca, AM. Social consequences of pediatric conditions: fertile area for future investigation and intervention. J Pediatr Psychol 1990;15:285–307.CrossRefGoogle Scholar
Verhoef, M, Barf, HA, Vroege, JA et al. Sex education, relationships, and sexuality in young adults with spina bifida. Arch Phys Med Rehabil 2005;86:979–87.CrossRefGoogle ScholarPubMed
Cardenas, DD, Topolski, TD, White, CJ, et al. Sexual functioning in adolescents and young adults with spina bifida. Arch Phys Med Rehabil 2008;89:31–35.CrossRefGoogle Scholar
Sawyer, SM, Roberts, KV. Sexual and reproductive health in young people with spina bifida. Dev Med Child Neurol 1999;41:671–5.CrossRefGoogle ScholarPubMed
Barf, HA, Post, MW, Verhoef, M, et al. Life satisfaction of young adults with spina bifida. Dev Med Child Neurol 2007;49:458–63.CrossRefGoogle ScholarPubMed
Verhoef, M, Barf, HA, Post, MW, et al. Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion. Dev Med Child Neurol 2006;48:114–19.CrossRefGoogle Scholar
Mukherjee, S. Transition to adulthood in spina bifida: changing roles and expectations. Sci World J 2007;7:1890–5.CrossRefGoogle ScholarPubMed
Buran, CF, Sawin, KJ, Brei, T, et al. Adolescents with myelomeningocele: activities, beliefs, expectations, and perceptions. Dev Med Child Neurol 2004;46:244–52.CrossRefGoogle Scholar
Leger, RR. Severity of illness, functional status, and HRQOL in youth with spina bifida. Rehabil Nurs 2005;30:180–7.CrossRefGoogle ScholarPubMed
Oakeshott, P, Hunt, GM. Long-term outcome in open spina bifida. Br J Gen Pract 2003;53:632–6.Google ScholarPubMed
Valtonen, K, Karlsson, AK, Alaranta, H, et al. Work participation among persons with traumatic spinal cord injury and meningomyelocele. J Rehabil Med 2006;38:192–200.CrossRefGoogle Scholar
Bernstein, JH. Developmental neuropsychological assessment. In Yeates, KO, Ris, MD, Taylor, HG, eds. Pediatric Neuropsychology: Research, Theory and Practice. New York: Guilford; 2000: 405–38.Google Scholar
Mahone, EM, Slomine, BS. Managing dysexecutive disorders. In Hunter, SJ, Donders, J, eds. Pediatric Neuropsychological Intervention. New York: Cambridge University Press; 2007: 287–313.Google Scholar
Wagner, MM, Blackorby, J. Transition from high school to work or college: how special education students fare. Future Child 1996;6:103–20.CrossRefGoogle ScholarPubMed
Buran, CF, McDaniel, AM, Brei, TJ. Needs assessment in a spina bifida program: a comparison of the perceptions by adolescents with spina bifida and their parents. Clin Nurse Spec 2002;16:256–62.CrossRefGoogle Scholar
Bailey, S, O'Connell, B, Pearce, J. The transition from paediatric to adult health care services for children with acquired or congenital disorders. Aust Health Rev 2003;26:64–9.CrossRefGoogle Scholar
Soanes, C, Timmons, S. Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care 2004;8:102–12.CrossRefGoogle ScholarPubMed
LoCasale-Crouch, L, Johnson, B. Transition from pediatric to adult medical care. Adv Chronic Kidney Dis 2005;12:412–17.CrossRefGoogle ScholarPubMed
Johnson, KL, Dudgeon, B, Kuehn, C, et al. Assistive technology use among adolescents and young adults with spina bifida. Am J Public Health 2007;97:330–6.CrossRefGoogle Scholar
Bergman, J, Konijeti, R, Lerman, SE. Myelomeningocele information on the internet is accessible and of variable quality, and requires a high reading level. J Urol 2007;177:1138–42.CrossRefGoogle ScholarPubMed
Loomis, JW, Javornisky, JG, Monahan, JJ, et al. Relations between family environment and adjustment outcomes in young adults with spina bifida. Dev Med Child Neurol 1997;39:620–7.CrossRefGoogle ScholarPubMed
Sawin, KJ, Brei, TJ, Buran, CF. Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs 2002;20:279–304.CrossRefGoogle ScholarPubMed
Coakley, RM, Holmbeck, GN, Bryant, FB. Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis. J Pediatr Psychol 2006;31:1084–99.CrossRefGoogle ScholarPubMed
Schultz, AW, Liptak, GS. Helping adolescents who have disabilities negotiate transitions to adulthood. Issues Compr Pediatr Nurs 1998;21:187–201.CrossRefGoogle ScholarPubMed
Holmbeck, GN, Friedman, D, Abad, M, et al. (2006).Development and psychopathology in adolescence. In Wolfe, DA, Mash, EJ, eds. Behavioral and Emotional Disorders in Adolescence: Nature, Assessment, and Treatment. New York: Guilford Press; 2006: 21–55.Google Scholar

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