Online peer support groups on text-based platforms, such as Facebook groups or discussion forums, can have a much larger membership than in-person groups or groups using videoconferencing platforms. Moderators should provide a clear description of the purpose of the group and who it is for, and what the ground rules are.
Explanation and Examples
Findings from an extensive systematic literature research on online peer support for people with different chronic, neurodegenerative conditions, identified several elements of best practice. Online health communities, for example on social media or discussion forums can have a large membership and tend to be more anonymous in nature. To prevent access by people for whom the group is not really intended, the group should be closed. This means that the moderators need to approve before new members can join. This goes hand in hand with the purpose of the group and who it is for. For example, if the group is only for people living with a Onset of dementia symptoms before the age of 65. More diagnosis, moderators may want to avoid that family members, healthcare professionals, or researchers access the group. This is to allow the members to speak freely and to respect their privacy. It is also important to clearly indicate, preferably on the home page, who the group is for. Is it only for people with a diagnosis, only for carers, or for both? Finally, it is the responsibility of the moderator to intervene when someone shares harmful, misleading, or disrespectful content in the group. The moderator should delete such messages and, if possible, contact the author. In this way the moderator ensures the group remains a safe space for everyone.
The findings of the systematic literature review were echoed by people with Onset of dementia symptoms before the age of 65. More who took part in individual interviews and had experiences with peer support on text-based platforms.
ThemesOnline intervention Peer support People with dementia Text-based platforms Young Onset Dementia
Target groupsHealth care providers & patient organizations Social care providers
Type of evidence
Systematic literature review on online peer support for people with Parkinson’s Disease, MS, and ALS.
Gerritzen, E.V., Lee, A.R., McDermott, O., Coulson, N., & Orrell, M. (2022). Online peer support for people with Parkinson’s Disease: Narrative synthesis systematic review. JMIR Aging, 5(3). doi.org/10.2196/35425 https://aging.jmir.org/2022/3/e35425
Gerritzen, E.V., Lee, A.R., McDermott, O., Coulson, N., & Orrell, M. (2022). Online peer support for people with Multiple Sclerosis: Narrative synthesis systematic review. International Journal of MS Care 1 November 2022; 24 (6): 252–259. doi: doi.org/10.7224/1537-2073.2022-040
Gerritzen, E.V., Lee, A.R., McDermott, O., Coulson, N., & Orrell, M. (2022). Online peer support for people with Amyotrophic Lateral Sclerosis: Narrative synthesis systematic review. Under review