CHARGE on: Digital parenting of a child with rare genetic syndrome with the help of Facebook group

This article relies on auto-ethnography to make sense of the role a closed Facebook group can play in the life of a parent with a child who has rare genetic syndrome, CHARGE. The article will use the concept of affordances as a general framework to make sense of the activities in the Facebook group. For Norman “affordances refer to the potential actions that are possible, but these are easily discoverable only if they are perceivable: Perceived affordances”, thus the Facebook group becomes a sum of imagined possibilities. Previous research has identified the following affordances of social media: identity, flexibility, structure, narration and adaptation. These five affordances will be used to structure the discussion around the parenting experiences.

"Previous research has identified the following affordances of social media: identity, flexibility, structure, narration and adaptation. These five affordances are used to structure the discussion around the parenting experiences." (Pruulmann-Vengerfeldt, 2018, p. 189). "I see this Facebook group as building an identity as the parents through the narratives, but also an enclave of normalisation of our different children, which is visible through sharing pictures and videos of their children." (Pruulmann-Vengerfeldt, 2018, p. 193).