Perceived effectiveness and barriers to physical therapy services for families and children with Friedreich ataxia

Pediatr Phys Ther. 2013 Fall;25(3):305-13. doi: 10.1097/PEP.0b013e31828ed7cb.

Abstract

Purpose: To describe the frequency, type, and perceived effectiveness of physical therapy interventions for children with Friedreich ataxia (FA); identify barriers to therapy; and solicit advice from parents.

Method: Parents of 30 children with FA participated in semistructured interviews. Qualitative and quantitative methods were used to analyze the data.

Results: Sixty-seven percent of children received direct physical therapy service. Stretching and strengthening exercises were used most frequently, and their perceived usefulness increased as the children aged. Seventy-three percent received home exercise programs; 9% implemented these consistently. External barriers included a lack of expert providers and limited reimbursement. Internal barriers included limited time and energy, lack of awareness of services, and children's preferences not to be treated differently. Parents advised therapists to become experts, advocates, and use approaches based on family and child preferences.

Conclusions: Outcomes provide a starting point for developing further research, education, and effective interventions for children with FA.

MeSH terms

  • Adolescent
  • Child
  • Disabled Children / rehabilitation
  • Exercise Therapy / methods*
  • Exercise Therapy / psychology*
  • Female
  • Friedreich Ataxia / rehabilitation*
  • Health Services Accessibility
  • Humans
  • Interviews as Topic
  • Male
  • Motivation
  • Patient Preference
  • Physical Therapy Specialty / methods*
  • Professional-Family Relations
  • Time Factors