The Viewpoint of Informal Carers of People with Multiple Sclerosis in Digital Health Research: A Scoping Review
Yrttiaho, Tiia; Mylonopoulou, Vasiliki; Giunti, Guido; Isomursu, Minna (2024-05-05)
Springer
05.05.2024
Yrttiaho, T., Mylonopoulou, V., Giunti, G., Isomursu, M. (2024). The Viewpoint of Informal Carers of People with Multiple Sclerosis in Digital Health Research: A Scoping Review. In: Särestöniemi, M., et al. Digital Health and Wireless Solutions. NCDHWS 2024. Communications in Computer and Information Science, vol 2083. Springer, Cham. https://doi.org/10.1007/978-3-031-59080-1_23
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© 2024 The Author(s). This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made. The images or other third party material in this chapter are included in the chapter’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.
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© 2024 The Author(s). This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made. The images or other third party material in this chapter are included in the chapter’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.
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Julkaisun pysyvä osoite on
https://urn.fi/URN:NBN:fi:oulu-202405133337
https://urn.fi/URN:NBN:fi:oulu-202405133337
Tiivistelmä
Abstract
Multiple sclerosis (MS) is a common neurological disease that can impact not only individuals diagnosed with the condition but also their informal carers, i.e. family members and friends. This scoping review aimed to map the role that family members and friends of people with multiple sclerosis have had in digital health research. The scoping review was reported according to PRISMA-ScR. The search was done in Scopus, CINAHL, Pubmed, and Web of Science. A total of 14 studies met the inclusion criteria. These studies were about telemedicine, rehabilitative video games, online education, user research, and development. Usually, family members and friends had a side part in the research. One study focused exclusively on them, and in total, in eight studies family and friends were participants in the study. Otherwise, they were accompanying the person with multiple sclerosis, were seen as possible users of the digital solution or they appeared in results by someone else. In this scoping review, it was seen that informal carers can get support and information from digital sources, they are able to act as informal carers in digital environments, healthcare professionals can receive information from them and family and friends can help in remote assessments, and digital solutions can help informal carers and people with MS to connect in a new or better way. Our results highlight that digital health can bring benefits to family members, people with multiple sclerosis, and healthcare.
Multiple sclerosis (MS) is a common neurological disease that can impact not only individuals diagnosed with the condition but also their informal carers, i.e. family members and friends. This scoping review aimed to map the role that family members and friends of people with multiple sclerosis have had in digital health research. The scoping review was reported according to PRISMA-ScR. The search was done in Scopus, CINAHL, Pubmed, and Web of Science. A total of 14 studies met the inclusion criteria. These studies were about telemedicine, rehabilitative video games, online education, user research, and development. Usually, family members and friends had a side part in the research. One study focused exclusively on them, and in total, in eight studies family and friends were participants in the study. Otherwise, they were accompanying the person with multiple sclerosis, were seen as possible users of the digital solution or they appeared in results by someone else. In this scoping review, it was seen that informal carers can get support and information from digital sources, they are able to act as informal carers in digital environments, healthcare professionals can receive information from them and family and friends can help in remote assessments, and digital solutions can help informal carers and people with MS to connect in a new or better way. Our results highlight that digital health can bring benefits to family members, people with multiple sclerosis, and healthcare.
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