PHD Project: Multi-stakeholder activity management for children with Chronic Fatigue, 2020 - 2024

Abstract

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a complex condition characterised by severe mental and physical fatigue, accompanied by a range of other symptoms including muscle pain, sleep disturbance and headaches (Baker & Shaw, 2007). It is thought that CFS/ME affects approximately 0.1-2% of adolescents, but the prevalence in primary school aged children (5-11 years) is unknown (Brigden, Shaw & Crawley, 2021). However, disability in primary school aged children due to the condition is quite high, with low school attendance and high levels of pain, anxiety, and fatigue (Davies, & Crawley, 2008). Most primary school aged children (5-11 years) are not able to manage their treatment plan independently and thus rely on adults for support (Erickson, Gerstle & Feldstein, 2005). As children usually spend a significant amount of time at school, a large proportion of this support is required from teachers. Despite this, teachers are often ill-equipped to support children living with a chronic condition (St Leger, 2014).

This project aims to improve the fatigue management in children with ME/CFS and communication between key stakeholders involved in their care (parents/teachers). This project will develop and assess the feasibility of a interactive wearable/digital system that can facilitate self-monitoring of physical activity (e.g. step count, HR) and subjective activity and symptom ratings. It is anticipated that this will connect to a dashboard which will allow stakeholders to monitor the child's activity and facilitate teachers and parents having greater involvement in day-to-day management of care whilst at school.

The beginning phase of this project will use qualitative, co-design methods with teachers, parents, and children to understand the design requirements of the wearable and digital system. The second phase of the project will involve development of the system; this will be a largely iterative process as part of co-designing alongside the stakeholders until a final design is reached. The final phase of this project will involve evaluating the feasibility and effectiveness of the multi-stakeholder tool in improving activity management. This is important moving forward to understand whether this technological approach is feasible to implement into schools and has a positive impact on the management of CFS/ME in primary school children.

https://gtr.ukri.org/projects?ref=studentship-2452326

 

The child could be sitting perfectly still (or even laying down) at school and be over their activity limit especially if they were trying to learn new material.

 

True, it is a start. IF the parents and teachers make the connection between activity one day and PEM - especially if delayed.

 

This supposes that illness is mild. There is precious little uk paediatric research on anything other than mild.
The focus on being in school demonstrates the lack of knowledge of the illness

School attendance, even supported school attendance , can quickly push into moderate and severe. Kids are usually set up to fail.

Pressure to attend, to keep up etc is huge - it's only when you are on the outside that the full extent of this is appreciated.
For those other than mild it is horrendous.

COVID should have taught us that a child does not require to be in school to learn. Indeed being able to access online modules when able is far more conducive to better physical and mental health.

 

The PhD candidate: http://www.bris.ac.uk/cdt/digital-health/people/current-students/lauren-thompson/