‘They embrace you virtually’: The internet as a tool for social support for people with ALS
- DOI:
- 10.1093/med/9780198757726.003.0011
People with ALS may feel lonely, isolated, and bereft of information. Although professionals provide support, their time is in short supply and patients only see them periodically. For many decades there has been a tradition of face-to-face support groups to offer help to patients and caregivers in their local communities, but these have limitations. In recent years a new form of community has arisen, the online community. A relatively small evidence base suggests they may help patients and caregivers to be better informed, receive psychosocial support, and regain a peer network even as their ability to communicate and be physically active in the world diminishes. There are risks, however, such as misinformation, vulnerability to scams, and harms that might arise from becoming too involved in the disease at the exclusion of other facets of their lives. As mainstream social networks such as Facebook become dominant, the landscape will evolve rapidly.
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