Psychosocial well-being of parents of children with ataxia who attended the Training and Support Programme: A 12-month follow-up

SummaryThe aim of this study was to investigate the impact of a Training and Support Programme (TSP) for parents of children with ataxia, 12 months after commencing the programme. The TSP provides instruction in basic massage to parents of children with disability and life limiting conditions. Questionnaires were mailed at 12-month follow-up to 27 parents who had completed a questionnaire at 4-month follow-up. Of the 14 parents who responded, the median age was 46 years (range 37–57 years), 11 were female and 6 were still massaging their children at 12-month follow-up. Eight children were male, median age 14 years (range 8.3–22.0 years). Results revealed trends towards improvements in parental satisfaction with life and improvements in children's sleeping and bowel movements for those who were still massaging their children at 12-month follow-up. Results suggest that it may be useful to offer parents support and encouragement in the year after attending the TSP, if they wish to continue to massage their children.