Service Delivery

Parents' Experiences and Expectations From Physiotherapy for Children With Down Syndrome: A Scoping Review.

Akhila et al. (2026) · Journal of intellectual disability research : JIDR 2026
★ The Verdict

Parents see physiotherapy as the key to mobility for Down syndrome, but access pain and emotional load threaten follow-through.

✓ Read this if BCBAs who write therapy goals or care plans for children with Down syndrome.
✗ Skip if Practitioners serving only adults or clients without motor delays.

01Research in Context

01

What this study did

Akhila et al. (2026) gathered every paper that asked parents of kids with Down syndrome about physiotherapy. They did not run new interviews. They simply mapped what parents have already said worldwide.

The team looked at why parents seek physiotherapy, what they hope for, and what goes wrong.

02

What they found

Parents value physiotherapy. They see it as the main road to stronger sitting, walking, and later independence.

Yet they also say the road is bumpy. Spots are scarce, drives are long, costs hurt, and staff rarely check on parent stress.

03

How this fits with other research

de Leeuw et al. (2024) asked adults with any neurodevelopmental diagnosis and their families about future-care plans. Both reviews use the same scoping method and find the same wall: families want services, but systems offer scraps.

Pye et al. (2024) counted therapy use after Australia’s new funding scheme. Kids in richer suburbs lined up two services; kids in poor or remote areas got less. Fathimath’s parents tell the same money-and-mile story for Down syndrome physiotherapy.

Mandak et al. (2018) showed that speech-language pathologists think they are family-centered, but parents of autistic children disagree. Fathimath’s parents voice the same mismatch: they feel unheard while therapists think all is fine.

04

Why it matters

Check parent stress at every plan meeting. Ask two quick questions: “How is the drive?” and “How are you feeling?” If the answer is “tired” or “far,” fold travel training or tele-exercise into the behavior plan. Small fixes keep parents on board and kids moving.

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Add a parent stress and travel barrier item to your intake form, then problem-solve those barriers before the first physio visit.

02At a glance

Intervention
not applicable
Design
scoping review
Population
down syndrome
Finding
not reported

03Original abstract

BACKGROUND: Physiotherapy plays a vital role in the care and development of children with Down syndrome (CDS), especially in addressing related health issues. Understanding caregivers' perspectives on physiotherapy for CDS is essential for enhancing service delivery. This scoping review aims to synthesize research on parental experiences and expectations concerning physiotherapy for CDS. METHOD: Scoping review methodology follows the recommendations of Arksey and O'Malley and the steps described by the Joanna Briggs Institute. A comprehensive search strategy was employed across four electronic databases: PubMed, Scopus, Web of Science and CINAHL, as well as relevant grey literature sources. RESULTS: Out of the 97 studies screened, five met the inclusion criteria and were included in the review. Parents widely viewed physiotherapy as essential for their child's development, reporting benefits in motor skills, confidence and independence. However, they also faced challenges such as limited access, emotional strain and service dissatisfaction. CONCLUSIONS: This review enhances our understanding of the experiences and expectations of parents concerning physiotherapy for children with Down syndrome. It identifies important areas where future research and clinical practice can improve developmental outcomes and the quality of life for CDS.

Journal of intellectual disability research : JIDR, 2026 · doi:10.1111/jir.70088