Cross-informant agreement between adolescents with myelomeningocele and their parents.
The development of self-management skills by adolescents with myelomeningocele is an ongoing process. Previous studies lack consensus about what data can be accurately obtained from adolescents. This cross-sectional study using a convenience sample of 66 adolescent-parent dyads evaluated whether adolescents with myelomeningocele and their parents are interchangeable reporters of data. Adolescents' ages ranged from 12 to 21 years with a mean of 16 years 2 months (SD 2y 8mo); 38 were female, 28 were male; 30% had thoracic lesions, 32% had lumbar lesions, 15% had lumbosacral lesions, 23% had sacral lesions, and 85% had ventriculoperitoneal shunts. In this analysis, participants reported activities (decision-making, household responsibility, and friendship activities) and select outcomes (functional status, self-management, and social competence) similarly. However, differences emerged in reports of beliefs (adolescent future expectations, family variables) and select developmental competencies (school, job, athletic, behavioral, attractiveness, and romantic appeal). Analysis using t-test and interclass correlations supported a pattern of adolescent-parent agreement in areas of observable behavior and differences in more subjective domains such as perception of developmental competencies.
College of Nursing, University of Wisconsin-Milwaukee and Children's Hospital of Wisconsin, 53201, USA. sawin@uwm.edu
Kathleen J
KJ
Sawin
Melissa
M
Hayden Bellin
Elizabeth
E
Builta
Laura
L
Vasel
Constance F
CF
Buran
Timothy J
TJ
Brei
D000293:Adolescent; D000328:Adult; D002648:Child; D003430:Cross-Sectional Studies; D003469:Culture; D003657:Decision Making; D005260:Female; D033062:Friends; D006801:Humans; D008297:Male; D008591:Meningomyelocele / Q000628:therapy*; D015588:Observer Variation; D010290:Parents; D026684:Personal Autonomy; D012648:Self Care / Q000706:statistics & numerical data*; D020377:Self Efficacy; D012919:Social Behavior; D011795:Surveys and Questionnaires