An adapted walking intervention for a child with Pitt Hopkins syndrome^*

Abstract

Purpose: To investigate the effects of a community-based adapted walking intervention on a child with Pitt Hopkins syndrome (PTHS).

Methods: A four-year old boy with PTHS participated in a 12-week intervention comprising five one-hour long walking sessions per week at a local daycare. Walking sessions used the Upsee mobility device (Firefly by Leckey Ltd., Ireland). Outcome measures included Goal Attainment Scaling and the Mobility Ability Participation Assessment.

Results: Parental and caregiver goals for social interaction, physical activity and physical health surpassed expectations by post-testing. Gains were not sustained at three months follow-up. The participant’s ability and mobility may have increased following the intervention.

Conclusions: Participants with PTHS may benefit from regular physical activity and early intervention. The Upsee mobility device is a feasible and fun way to promote inclusive community-based physical activity and social engagement in a young child with PTHS. Further research into the health benefits of physical activity and the Upsee for children with PTHS may be warranted.

Implications for Rehabilitation

• Physical activity may be beneficial for a child with Pitt Hopkins syndrome, a rare genetic disorder.

• New design, implementation of mobility intervention for a child with neurodevelopmental disabilities.

• The Upsee mobility device may offer physical benefits for a child with a neurodevelopmental disability.

• The Upsee mobility device may offer social benefits for a child with a neurodevelopmental disability.

Keywords:

• TCF4
• case study
• paediatrics
• movement skill interventions
• functional rehabilitation

Acknowledgements

The authors would like to thank the participant and his family for their support during this study. We would also like to pass on our gratitude to daycare staff and all Human Kinetics students from St. Francis Xavier University for their support during the intervention.

Disclosure statement

The authors declare no conflict of interest.

Additional information

Funding

This project was not funded.