Exploring the use of Activity Monitors with young people who have CFS/ME: a pilot study

Simons, Joan; Dalton, Glenda and Savory, Clive (2018). Exploring the use of Activity Monitors with young people who have CFS/ME: a pilot study. In: Digital Health and Wellbeing Conference, 1-3 May 2018, The Open University.

Abstract

Around 1 in 100 children and young people in the UK are suffering with CFS/ME. It is a long-term condition, which can have a major impact on quality of life if not managed effectively, due mainly to overwhelming fatigue. One of the recognised forms of treatment for CFS/ME is a Graded Exercise Plan under the supervision of a physiotherapist.
Maintaining compliance to a graded exercise plan is vital for young people. However, due to the nature of CFS/ME, young people need support in following their exercise plan. It is not uncommon for young people to under or over exercise in relation to an exercise plan. In addition, for various reasons, reporting of actual exercise done is not always precise. This can make it difficult for the physiotherapist to assess whether an exercise plan has been completed and to what effect. Building a young person’s own awareness of their condition and how physical activity can be an important strategy to selfmanage their condition is an important part of successfully managing CFS/ME.
This pilot study involved 5 young people and their parents. The five young people wore an activity monitor for up to one year. Face to face interviews were conducted pre and post wearing the activity monitor. Parents of the young people were also interviewed and data was also collected over a period to twelve months by the physiotherapist working with the young people.
Findings suggest that the use of the activity monitor allowed the young people to regulate their graded exercise. They also provided young people with the ability to learn to judge the amount of exercise they had taken over the period of a day. For the parents of the young people with CFS/ME it provided reassurance that there was a record of their son or daughters exercise on a given day. Some parents found this helpful in relation to their responsibility to monitor the amount of exercise taken. The physiotherapist found the data from the activity monitors helped frame her discussion of the young person’s engagement with their exercise plan.
Conclusion: Using an activity monitor for young people with CFS/ ME had a defined benefit in relation to their graded exercise plan.

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