Andy
Retired committee member
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
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
