Adolescents with my elomeningocele: activities, beliefs, expectations, and perceptions

Authors

  • Constance F Buran DNS RN,

    Corresponding author
    1. Ambulatory Administration, Riley Hospital for Children, Indianapolis, IN
      * Correspondence to first author at Riley Hospital for Children, Rehabilitation MSA (RI 1329), 702 Barnhill Drive, Indianapolis, IN 46202, USA. E-mail: cburan@clarian.org
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  • Kathleen J Sawin DNS CPNP FAAN,

    1. Children's Hospital of Wisconsin, University of Wisconsin Milwaukee, Milwaukee, WI
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  • Timothy J Brei MD,

    1. Developmental Pediatrics, Riley Hospital for Children, Indiana University, Indianapolis
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  • Philip S Fastenau PhD

    1. Department of Psychology, Purdue School of Science, Indiana University Purdue University Indianapolis, Indianapolis, IN, USA.
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* Correspondence to first author at Riley Hospital for Children, Rehabilitation MSA (RI 1329), 702 Barnhill Drive, Indianapolis, IN 46202, USA. E-mail: cburan@clarian.org

Abstract

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:
AAI-DM

Adolescent Activities Inventory for decision making

ADI

Adolescent Decision-Making Inventory

AMIS

Adolescent Self-Management and Independence Scale

WeeFIM

Functional Independence Measure for Children

Ancillary