Perceived Effectiveness and Barriers to Physical Therapy Services for Families and Children With Friedreich Ataxia

Abstract

Purpose To describe the frequency, type, and perceived effectiveness of physical therapy (PT) 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 semi-structured interviews. Qualitative and quantitative methods were used to analyze the data. Results Sixty-seven percent of children received direct PT. Stretching and strengthening 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.

Factors Associated with Parents’ Adherence to Different Types of Exercises in Home Programs for Children with Disabilities

“…This can lead to an inadequate performance of the exercise, different from what the therapist recommended [6,11], or to a reduction in their adherence to this kind of exercises, as our study shows. Thus, it is reasonable to think that when therapists focus on improving parents’ knowledge and abilities, by providing information [23], justifying the usefulness of exercises [2,3] and using the child as a model [3,14], this has a positive effect on adherence. It would be interesting for therapists to consider their influence on adherence to these types of exercises when they plan their interventions with families.…”

“…To summarise, the results suggest that adherence is a multidimensional construct, which could be different for each component of the HEP. In fact, parents appreciate that there are different levels of difficulty to be learned between the exercise types [7,14,18]. Therefore, therapists should not categorize parents as being adherent or non-adherent, but should find out their performance for each part of the HEP and their difficulties and barriers for their implementation [33].…”

“…After reviewing the relevant literature [5,11,14,15], we considered three areas of potential factors: (1) individual; (2) social support and resources; and (3) illness/treatment.…”

Rehabilitation for Individuals With Genetic Degenerative Ataxia: A Systematic Review

“…14 The PEDro scale was developed by Delphi consensus, 14 with 2 additional items reporting follow-up adequacy and between-group statistical comparison. The maximum score for the PEDro scale is 10, with studies rated as excellent (score 9-10); good (6)(7)(8); fair (4-5), and poor (<4). 15 Because of the large variability in inclusion criteria, and the heterogeneity of outcome measures, a meta-analysis was not performed.…”

Motor Function Improvement in Children with Ataxia Receiving Interval Rehabilitation, Including Vibration-Assisted Hometraining: A Retrospective Study

“…Regarding children with ataxia there is a vivid appeal for specialised, evidence-based treatment [7,14]. We know that parental inclusion through home-based therapy can be effective for motor improvement, as well as for the life quality of children and their families, as reported by the parents themselves [1].…”