About the resource
In recent years, the number of children and adolescents being diagnosed with MS has increasingly been recognised. A diagnosis of MS at such a young age can place extra demands on caregivers, who may be required to take on many diverse roles and caring responsibilities. Developing a better understanding and treatment of paediatric MS, as well as supporting and empowering MS carers, have been identified as key priority actions within the European Multiple Sclerosis Platform’s (EMSP) Code of Good Practice. There has, however, been little focused analysis on the unmet needs of these caregivers, or the supports that may be available to them in a European context.
We aimed to investigate these issues by conducting (1) a rapid systematic review of the literature into the unmet needs of caregivers of those with paediatric MS, and (2) a survey aimed at gathering information on the available supports and resources for caregivers completed by national MS societies and experts in the area of paediatric MS. The results of the literature review, which amalgamates findings from several studies in the area, suggests that caregivers of children and adolescents with MS (typically their parents) can experience various interlinked needs.
These include needs for: psychological support, better information, practical support, educational support, social support.
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