Experiences of Parents of Infants Diagnosed With Mild or Severe Grades of Congenital Muscular Torticollis.

PURPOSE: The primary purpose of this study was to describe the experiences of parents of infants diagnosed with congenital muscular torticollis (CMT). A secondary purpose was to compare the experiences of parents of infants with mild grades versus severe grades of involvement based on the CMT severity classification system. METHODS: Through semistructured interviews, a qualitative phenomenological approach of inquiry was used to investigate the lived experiences of 12 parents. RESULTS: Eight themes common to both groups of parents were identified. Findings indicated having an infant with CMT has a significant effect on the parents and other caregivers. Two themes were unique to parents of the infants with severe CMT. CONCLUSIONS: Parents are faced with a diagnosis that requires regular therapy visits and a challenging home program. A multimodal approach by clinicians for teaching and supporting parents during the episode of care may best address their unique challenges and stresses.

Interrater and Intrarater Reliability of the Congenital Muscular Torticollis Severity Classification System.

PURPOSE: To establish inter- and intrarater reliability for determining severity grades of the congenital muscular torticollis severity classification system (CMT-SCS). METHODS: A prospective reliability study with 145 physical therapists recorded severity ratings on 24 randomly-ordered patient cases including age of infant, cervical range of motion, and presence or absence of sternocleidomastoid mass. To compute intrarater reliability, cases were randomly reordered and graded by 82 of the original raters. RESULTS: For the CMT-SCS, overall reliability was good with an interrater reliability intraclass correlation coefficient (ICC) (2,1) of 0.83 (95% confidence interval [CI], 0.74-0.91) and an intrarater reliability ICC (3,1) of 0.81 (95% CI, 0.66-0.91). CONCLUSIONS: The CMT-SCS has good reliability for infants up to 12 months of age. Physical therapists can use the scale for initial assessment of infants suspected to have CMT. The CMT-SCS should be standard documentation for infants with CMT.

Short-term, intensive neurodevelopmental treatment program experiences of parents and their children with disabilities.

PURPOSE: Parents' perspectives on intervention and functional changes in children were investigated following an intensive neurodevelopmental treatment (NDT) program of 1 to 2 weeks (5 consecutive days per week; 2-4 h/d). METHODS: Thirteen parents and their children (aged 1-17 years) with neuromotor conditions participated in a short-term, intensive program conducted by NDT certified pediatric therapists. A mixed-method design was used: a qualitative phenomenological approach of inquiry for parent perspectives and a pre/posttest quasi-experimental design for weekly intervention changes using Goal Attainment Scaling and the Canadian Occupational Performance Measure. RESULTS: Through interviews, parents reported positive experiences with the intensive NDT program. Child participants demonstrated significant improvements in Goal Attainment Scaling (P < .001) and Canadian Occupational Performance Measure (P < .001) scores pre- to postintervention. CONCLUSIONS: A short-term, intensive NDT program was perceived by parents as beneficial and supported functional improvements. Valued were expert, compassionate therapists; collaboration; objective goals; home programming; and individualized intervention. Scheduling, financial support, and fatigue were difficulties.