The Viewpoint of Informal Carers of People with Multiple Sclerosis in Digital Health Research: A Scoping Review

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.