Table 1.

Demographics of participants

Phase I-Parent Focus Groups (n=6)
Relationship to child	100% Mothers
Race/Ethnicity	83% White/Non-Hispanic
Children’s ages	3 – 12 years
Children’s Diagnoses	Joubert’s Syndrome/Blindness Cerebral Palsy with hemiplegia Mitochondrial Disorder Asperger’s Syndrome (n=2) Myelomeningocele
Phase I-Clinician Focus Groups (n=11)
Clinical Discipline	36% Physical therapists 27% Occupational therapists 27% Speech-language pathologists
Average Years of Experience	16.3
% Female	88%
Phase II-Cognitive Interviews (n=11)
Relationship to child	100% Mothers
Education	27% Some College 46% College Graduate 27% Graduate School
Race/Ethnicity	91% White; 100% Non-Hispanic
Children’s ages	4 – 17 years
Children’s Diagnoses	Learning Disabilities and Dyslexia ADHD Asperger Syndrome Mitochondrial Disorder Spina Bifida Chromosome Deletion/Developmental Delay/Vision and Hearing Impairment