The Training and Support Programme for parents of children with ataxia: parents’ perspectives

Abstract

The aim of the study was to assess the Training and Support Programme (TSP) among parents of children with ataxia. Twenty‐seven parents and their children completed the TSP. Data were collected by home record sheets and observation sheets completed by parents and therapists, respectively, and telephone interviews with 10 parents. Benefits reported included improvements in children’s stiffness, ‘jumping legs’, agitation, energy and activity levels, circulation, balance, eating, non‐verbal communication, relaxation and happiness. One parent had become ‘more accepting’ of their child’s ataxia. Several families attended the TSP in one location. This facilitated the development of a ‘social network’ of similar families caring for children with ataxia. A randomised controlled trial would be necessary to determine whether the changes reported here are in fact due to attending the TSP. Such a study would benefit from the inclusion of children as active participants in the research process.

Keywords:

• Children
• Ataxia
• Parents
• Massage

Acknowledgements

The Research Team at Coventry University would like to extend their thanks to staff based at Ataxia‐UK for assistance with recruitment, to all the therapists who worked on the TSP and, last but not least, to all the families who agreed to give their time in attending the TSP and completing the associated research.