Developmental neurorehabilitation · 2026
Priorities, facilitators and barriers regarding physical therapy for individuals with rett syndrome: perspectives of parents, caregivers and physical therapists.
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Borst Hanneke, Sieben Judith, van den Berg Mariëlle, Vermeulen R Jeroen, de Bie Rob
Аннотация
PURPOSE: The aim of this study is to describe priorities, facilitators and barriers concerning physical therapy for individuals with Rett syndrome, as perceived by parents, physical therapists and professional caregivers.
MATERIALS AND METHODS: Parents, physical therapists and professional caregivers completed a questionnaire investigating important topics and priorities regarding physical therapy for individuals with Rett syndrome. Subsequently, semi-structured interviews were conducted among parents and physical therapists to explore priorities, facilitators and barriers. Coding resulted in several themes and subthemes, which were structured within the framework of the International Classification of Functioning, Disability and Health (ICF model).
RESULTS: Forty-two questionnaires were completed: 12 by parents, 15 by physical therapists, and 15 by professional caregivers. Semi-structured interviews were performed with 7 parents and 5 physical therapists. Themes that emerged were (1) General treatment goals; (2) Focus of physical therapy; (3) Therapeutic alliance and (4) Knowledge and expectations. Within these, main themes, priorities, facilitators and barriers were described.
CONCLUSIONS: Priorities within physical therapy are training gross motor skills and addressing musculoskeletal impairments. Important facilitators for physical therapy in Rett syndrome are a therapeutic environment within a knowledgeable multi-disciplinary team with a leading role for parents. Principal barriers are uncertainty, scarcity of knowledge, variability of skills and the delicate balance between goals and energy levels.
MATERIALS AND METHODS: Parents, physical therapists and professional caregivers completed a questionnaire investigating important topics and priorities regarding physical therapy for individuals with Rett syndrome. Subsequently, semi-structured interviews were conducted among parents and physical therapists to explore priorities, facilitators and barriers. Coding resulted in several themes and subthemes, which were structured within the framework of the International Classification of Functioning, Disability and Health (ICF model).
RESULTS: Forty-two questionnaires were completed: 12 by parents, 15 by physical therapists, and 15 by professional caregivers. Semi-structured interviews were performed with 7 parents and 5 physical therapists. Themes that emerged were (1) General treatment goals; (2) Focus of physical therapy; (3) Therapeutic alliance and (4) Knowledge and expectations. Within these, main themes, priorities, facilitators and barriers were described.
CONCLUSIONS: Priorities within physical therapy are training gross motor skills and addressing musculoskeletal impairments. Important facilitators for physical therapy in Rett syndrome are a therapeutic environment within a knowledgeable multi-disciplinary team with a leading role for parents. Principal barriers are uncertainty, scarcity of knowledge, variability of skills and the delicate balance between goals and energy levels.