1. Top of page
  2. Abstract
  3. References

The Carnegie Council on Adolescent Development, USA has identified activities, beliefs, and perceptions critical for healthy development. The aim of this study was to measure the activities, beliefs and expectations, and perceived outcomes of adolescents with myelomeningocele. In this descriptive study, 66 adolescents with myelomeningocele, aged 12 to 21 years and functioning at grade level, completed a structured interview. Thirty-eight (58%) of the participants were female. The level of lesion was distributed as follows: 30% had thoracic level lesions, 32% had lumbar level lesions, 15% had lumbosacral level lesions, and 23% of the sample had sacral level lesions. Instruments used had both established reliability and validity (WeeFIM, Harter's Self-Perception Profile, Austin's Child Attitude Toward Illness Scale, and Snyder's Hope Scale, Adolescent Decision-Making Inventory, Adolescent Coping Scale) or were scales developed for this study (Adolescent Activities Inventory, Future Expectations Scale, Communication Efficacy, and Adolescent Self-Management and Independence Scale). Scale reliabilities ranged from 0.70 to 0.88. These participants, though hopeful and positive in their attitudes toward myelomeningocele and generally able to perform activities of daily living independently, are not engaging in the full range of adolescent activities (decision making, friendship activities, and household responsibilities) and achieving positive outcomes (self-management and job) necessary to make a successful transition to adulthood. This might explain why so many individuals with myelomeningocele are underemployed and are not living independently as young adults.

List of abbreviations:

Adolescent Activities Inventory for decision making


Adolescent Decision-Making Inventory


Adolescent Self-Management and Independence Scale


Functional Independence Measure for Children


  1. Top of page
  2. Abstract
  3. References
  • Appleton PL., Ellis NC., Minchom PE., Lawson V., Boll V., Jones P. (1997) Depressive symptoms and self-concept in young people with spina bifida. J Pediatr Psychol 22: 707722.
  • Appleton PL., Minchom PE., Ellis NC., Boll V., Jones P. (1994) The self-concept of young people with spina bifida: a population-based study. Dev Med Child Neurol 36: 198215.
  • Austin JK., Huberty TJ. (1993) Development of the Child Attitude Toward Illness Scale. J Pediatr Psychol 18: 467480.
  • Bergsten M., Lagergren, J. (1990) Life conditions of adolescents with myelomeningocele. Dev Med Child Neurol 32: 698706.
  • Blum RW., Resnick MD., Nelson R., St Germaine A. (1991) Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics 88: 280285.
  • Briery BG., Rabian B. (1999) Psychosocial changes associated with participation in a pediatric summer camp. J Pediatr Psychol 24: 183190.
  • Cadman D., Boyle M., Szatmari P., Offord DR. (1987) Chronic illness, disability, and mental and social well-being: findings of the Ontario Child Health Study. Pediatrics 79: 805813.
  • Carnegie Council on Adolescent Development. (1995) Great Transitions: Preparing Adolescents for a New Century. New York : Carnegie Council on Adolescent Development.
  • Dise JE., Lohr ME. (1998) Examination of deficits in conceptual reasoning abilities associated with spina bifida. Am J Phys Med Rehabil 77: 247251.
  • Harter S. (1982) The perceived competence scale for children. Child Dev 53: 8797.
  • Harter S. (1988) Manual for the Self-perception Profile for Adolescents. Denver , CO : University of Denver.
  • Harter S. (1990) Issues in the assessment of the self-concept of children and adolescents. In: La Greca, AM., editor. Through the Eyes of the Child: Obtaining Self-reports from Children and Adolescents. Boston : Allyn and Bacon.p 292325.
  • Heimlich TE., Westbrook LE., Austin JK., Cramer JA., Devinsky O. (2000) Brief report: adolescents' attitude toward epilepsy: further validation of the Child Attitude Toward Illness Scale (CATIS). J Pediatr Psychol 25: 339345.
  • Hirst M. (1989) Patterns of impairment and disability related to social handicap in young people with cerebral palsy and spina bifida. J Biosoc Sci 21: 112.
  • Kim WJ. (1991) Psychiatric aspects of epileptic children and adolescents. J Am Ad Child Adolesc Psychiat 30: 874886.
  • King GA., Shultz IZ., Steel K., Gilpin M. (1993) Self-evaluation and self-concept of adolescents with physical disabilities. Am J Occup Ther 47: 132140.
  • Lynn MR. (1986) Determination and quantification of content validity. Nurs Res 35: 382385.
  • Mathews T., Honein M., Erickson J. (2001) Spina bifida and anencephaly prevalence-United States, 1999-2001. MMWR Surveill Summ 51: 911.
  • McAnarney E. (1985) Social maturation: a challenge for handicapped and chronically ill adolescents. J Adolesc Health Care 6: 90101.
  • McKernon WL., Holmbeck GN., Colder CR., Hommeyer JS., Shapera W., Westhoven V. (2001) Longitudinal study of observed and perceived family influences on problem-focused coping behaviors of pre adolescents with spina bifida. J Pediatr Psychol 26: 4154.
  • Melamed B., Siegal JM., Ridley-Johnson R. (1988) Coping behaviors in children facing medical stress. In: Field T., McCabe P., Schneidennan N., editors. Stress and Coping. Hillsdale , NJ : Lawrence Erlbaum.p 109137.
  • Meyer RE., Siega-Riz AM. (2002) Sociodemographic patterns in spina bifida birth prevalence trends-North Carolina, 1995–1999. MMWR Recomm Rep 52: 1215.
  • Monsen RB. (1992) Autonomy, coping, and self-care agency in healthy adolescents and in adolescents with spina bifida. J Pediatr Nurs 7: 913.
  • Msall ME., DiGaudio K., Duffy LC., LaForest S. (1994a) WeeFIM: normative sample of an instrument for tracking functional independence in children. Clin Pediatr (Phila) 33: 431438.
  • Msall ME., DiGaudio K., Rogers BT., LaForest S. (1994b) The Functional Independence Measure for Children (WeeFIM): conceptual basis and pilot use in children with developmental disabilities. Clin Pediatr (Phila) 33: 421430.
  • Nassau JH., Drotar D. (1997) Social competence among children with central nervous system-related chronic health conditions: a review. J Pediatr Psychol 22: 771793.
  • Ott J., Greening J., Palardy N., Holderby A., DeBell WK. (2000) Self-efficacy as a mediator variable for adolescent's adherence to treatment for insulin-dependent diabetes mellitus. Child Health Care 29: 4763.
  • Ottenbacher KJ., Taylor ET., Msall ME., Braun S., Lane SJ., Granger CV., Lyons N., Duffy L. (1996) The stability and equivalence reliability of the functional independence measure for children (WeeFIM). Dev Med Child Neurol 38: 907916.
  • Patterson JJ., McCubbin HI. (1998) ACOPE: Adolescent Coping Orientation for Problem Experiences. In: McCubbin HI., Thompson AI., McCubbin MA., editors. Family Assessment Resiliency, Coping and Adaptation. Inventories for Research and Practice. Madison , WI : University of Wisconsin Publishers p 537612.
  • Piazza F., Astori MG., Mollica F., Locatelli D., Pezzotta S., Pluderi C., Caroli A., Santi L., Ferrari G., Lanzi G. (1996) Neuropsychic development in children born with spina bifida. Pediatr Med Chirurg 118: 597600.
  • Pless IB. (1984) Clinical assessment: physical and psychological functioning. Pediatr Clin North Am 31: 3345.
  • Resnick MD. (1986) Sociological and social psychological factors influencing self-image among physically disabled adolescents. Int J Adolesc Med Health 2: 211221.
  • Resnick MD., Hutton L. (1987) Resilience among physically disabled adolescents. Psychiatr Ann 17: 796800.
  • Sawin K., Marshall J. (1992) Developmental competence in adolescents with an acquired disability. Rehabil Nurs Res 1: 4150.
  • Sawin K., Brei T., Buran C., Fastenau P. (2002) Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs 20: 279304.
  • Sawin K., Pellock J., Metzger S. (1998) Factors associated with developmental competence in adolescents with epilepsy. Paper presented at the Southern Nursing Research Conference, Ft Worth , Texas , 10th February, 1998..
  • Segal ME., Gillard M., Schall R. (1996) Telephone and in-person proxy agreement between stroke patients and caregivers for the functional independence measure. Am J Phys Med Rehabil 75: 208212.
  • Shurtleff DB. (2000) 44 years experience with management of myelomeningocele. Eur J Pediatr Surg 10: 58.
  • Snyder CR., Harris C., Anderson JR., Holleran SA., Irving LM., Sigmon, ST., Yoshinobu, L., Gibb J., Langelle C., Harney P. (1991) The will and the ways: development and validation of an individual-differences measure of hope. J Pers Soc Psychol 60: 570585.
  • Snyder CR., Sympson SC., Ybasco FC., Borders TF., Babyak MA., Higgins RL. (1996) Development and validation of the State Hope Scale. J Pers Soc Psychol 70: 321335.
  • Steinberg L. (2000) The family at adolescence: transition and transformation. J Adolesc Health 27: 170178.
  • Stevenson R., Allen W., Pai G., Best R., Seaver L., Dean J., Thompson S. (2000) Decline in prevalence of neural tube defects in a high-risk region of the United States. Pediatrics 106: 677683.
  • Strauss S., Clarke B. (1992) Decision-making patterns in adolescent mothers. Image J Nurs Sch 24: 6974.
  • Strax TE. (1991) Psychological issues faced by adolescents and young adults with disabilities. Pediatr Ann 20: 507511.
  • Voll R., Mayer U., Krumm B., Fichtner H. (1995) Coping in young people with spina bifida and traumatic paraplegia - an empirical investigation. Rehabilitation 34: 815.
  • Wallander JL., Thompson RJ. (1995) Psychosocial adjustment of children with chronic physical conditions. In: Roberts MC., editor. Handbook of Pediatric Psychology. 2nd edn. New York : The Guilford Press.p 124141.
  • Wallander JL., Varni JW. (1995) Appraisal, coping, and adjustment in adolescents with a physical disability. In: Wallander JL., Siegel LJ., editors. Adolescent Health Problems. New York : The Guilford Press.p 209231.
  • Wan T. (2002) Evidence-based Health Care Management: Multivariate Modeling Approaches. Boston : MA Kluwer Academic Publishers.
  • Wolman C., Resnick M., Harris L., Blum R. (1994) Emotional well-being among adolescents with and without chronic conditions. J Adolesc Health 15: 199204.
  • Zurmohle UM., Homann T., Schroeter C., Rothgerber H., Hommel G., Ermert JA. (1998). Psychosocial adjustment of children with spina bifida. J Child Neurol 13: 6470.