Parent-caregivers, Adults with Intellectual and/or Developmental Disabilities, and Virtual Geographies: The Challenges of Finding Support

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Hutton, Lorraine M.
caregiving , intellectual disability , resilience , virtual geography , mental health
Providing care to an adult who is intellectually disabled (ID) or intellectually and developmentally disabled (IDD) is often a lifetime commitment that parents never signed up for. There is no one size fits all approach to care, and the not knowing how is a significant part of the challenge. Not finding understanding or support from friends, family, neighbors, and society at large adds to the sense of isolation and loneliness, and political prioritizations that actively push adults with ID/IDD aside, consequently leaves caregiving parents to shoulder the responsibility alone. The broad questions this dissertation seeks to answer are: what do caregiving parents “do” or where do they “go” when they are not finding the support they need locally; and how and why parents providing care to adults with ID/IDD use social media? Social media and the virtual world have become the go to place for many people looking for connection, and yet it is not experienced equally by different age groups, incomes and geographically situated caregivers. A feminist methodological approach that used five complementary innovative methods of data elicitation were used to tease out and expose the issues and challenges that compel caregivers to enter virtual spaces. These methods included 1) in-person interviews (most completed virtually), 2) an anonymous (n=210) online survey (using Qualtrics), 3) netnography - a form of ethnography experienced via a Facebook closed group (Kozinets, 2015), 4) Facebook data mining (collecting group membership numbers from the public page of the groups), and 5) autoethnography. These methods sought to overcome the time, space, and geographic challenges of caregivers to tell their stories and to triangulate qualitative and quantitative data. Findings suggest that caregivers visit social media because it is easily accessed, and it is “free.” Caregivers have expressed that they expect to find understanding and information (legal and medical) from other caregivers. Most found their expectations were met; however, most were disappointed with the quality of the information they received. During the pandemic closed Facebook caregiver support groups numbers increased more rapidly, and it is suggested that Facebook became an alternative support source at a time when pertinent information and understanding from traditional sources were shuttered or not current.
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