The research community within rheumatology and musculoskeletal diseases at Diakonhjemmet Hospital has its own YouTube channel. There you can watch various webinars on topics related to this field. Here is a more detailed description of fatigue in children and adolescents.
Although children and adolescents with these diseases are not treated at our center, we invited Inger Helen Bolstad (occupational therapist) and Ulrika Nilsson (physiotherapist) from OUS/Rikshospitalet to talk about the work to develop a procedure for fatigue in children and adolescents. You can watch the webinar here!
They have also shared a text with us about this work:
Everyone can feel tired and fatigued, but for some, that feeling doesn't go away despite getting enough sleep and rest. They feel exhausted all the time and may have difficulty functioning in everyday life. Despite increasingly improved treatment of rheumatic disease in children and adolescents, fatigue is a common symptom. As physiotherapists and occupational therapists at OUS, we regularly met with these patients and we missed good tools in our work.
By: Ulrika Nilsson (physiotherapist) and Inger Helen Bolstad (occupational therapist), OUS. Photo: Hellevik studio
Where should we start? How should we map and investigate this as best as possible? And could we actually do something about it? These were questions we often asked ourselves and that we thought other physiotherapists and occupational therapists had also asked themselves. So we decided to create a knowledge-based professional procedure. The purpose was to create a kind of recipe for how we should proceed when we met these patients. To achieve this, we gathered knowledge from research, colleagues and users.
Why do some people get fatigue?
We don't know exactly why someone gets fatigue, but we do know something about the factors that influence it. To understand this better, we use a model. It is divided into biological factors (the body and the disease), psychological factors (emotions and thoughts) and social factors (how the environment affects). For example, pain, stress, too little sleep and worries can cause more fatigue.
Mapping and survey
Questions about fatigue should be included in the survey. It is important to find out whether the child has fatigue and how it affects everyday life. Is it difficult to participate in leisure activities? What about school? To get an overview of this, a survey of the child's activities throughout the week is made. Here we try to find out if there are any days or activities that require a lot of energy and whether we recognize any patterns that should be changed. It should also be investigated which factors affect the child's fatigue, for example a lot of pain, little sleep, and little physical activity. There are also some standardized measuring instruments that can be used.
Measures and treatment
There is limited research showing which treatment is effective in reducing fatigue, but some findings suggest that exercise may have a positive effect. Measures recommended in the procedure are mainly based on experiences from therapists and patients. Patient education is important to increase understanding and awareness of one's own activity level and how different factors affect fatigue. An activity plan can be developed in collaboration with the child to achieve an appropriate and consistent level of activity. This gives the child a more predictable everyday life with a balance between rest and activity. The plan is adjusted as needed. There are also many other factors that can affect fatigue in the individual and measures should be directed at these. Pain is a factor that is strongly linked to fatigue. It is therefore important that measures are directed at treating pain. Some children are not very physically active and should be motivated to move. Facilitating participation in school and leisure interests is important for the patient to experience coping. We have prepared an information film that can create understanding of how everyday life with fatigue can be experienced. Talking to friends and others about your own fatigue can be challenging, and this film can also be helpful. Children with severe fatigue often need services from multiple sources, and collaboration between these, such as schools and healthcare providers, is necessary.
Collaboration for a better offer
The knowledge-based professional procedure has been developed in collaboration with colleagues from all over Norway, both in hospitals and in municipal health services. We are currently using the procedure here at OUS. We look forward to gaining experience with how this works in practice and not least how patients experience it. We hope that our work has provided increased focus on fatigue in children and adolescents with rheumatic disease and contributes to better physiotherapy and occupational therapy services for this patient group.
Links and references
The procedure with associated patient information:
https://ehandboken.ous-hf.no/document/146724
Informational film: https://www.youtube.com/watch?v=7hlZddpi0Mk
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