Experiences of Parents of Infants Diagnosed With Mild or Severe Grades of Congenital Muscular Torticollis
Magdalena Oledzka, Jane K. Sweeney, Debbie L. Evans-Rogers, Colleen Coulter, Sandra L. Kaplan
Abstract
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.