Connections: Social media and parents raising children with profound multiple disabilities

Parenting plays an important role in many adult lives. Parenting a child with profound multiple disabilities results in a distinct parenting experience. This qualitative phenomenological study examined the role of social media in the lives of parents raising children with profound multiple disabilities. Five parents raising children with profound multiple disabilities were interviewed, and resulting themes were identified. Consistent with previous research, parents described the initial adaptation to their child’s disability-related needs as the most challenging period of their parenting to date. Adaptation was followed by an acclimation to a new normal of their parenting experience. Parents described moving from medical crises, feelings of isolation, and unfamiliarity with resource systems to becoming empowered through interactions with other parents raising children with profound multiple disabilities, both in-person and through social media. Parents focused on three areas with their social media efforts: their own social needs, their child’s social needs, and their child’s disability-related needs. To address disability-related needs, parents used a social media bricolage approach to create a composite of social media group memberships that reflected their child’s complex medical, disability and intervention profiles. Parents described social media use as daily and essential to their functioning both personally and within their parenting. However, parents prioritized in-person social connections and utilized social media to make and maintain relationships both online and in-person. Parents expressed awareness and deliberate use of privacy settings in using social media. Parents described common pitfalls to social media use and described engaging in disability awareness through social media. Parents described social media as providing a sense of community through which they became empowered in their parenting. They also networked through in-person and virtual social interactions. Social media provided these parents with a networked community empowerment experience as they parented their child with profound multiple disabilities