Informing care: Mapping the social organization of families’ information work in an aging in place climate
Within an institutional ethnography method of inquiry, this dissertation makes visible the information work that permeates the care work of families of people living with dementia who are also aging at home. An institutional ethnography privileges people’s everyday work and acknowledges that local contexts are influenced by translocal, ruling relations. To map out the social organization of family caregivers’ information work, this dissertation details four separate, yet interrelated studies. The first study comprises two sets of interviews: one with 13 family caregivers of older adults to understand their experiences of the information work they do and a second with five paid dementia care staff to identify the decisions and work processes that impact families’ information work. In the second study, I use Arksey and O’Malley’s six stage scoping review framework to understand how academic research frames family caregivers’ information work. I then structure the third study as a methodological critique as I deconstruct the scoping review framework and consider the implications of conducting a scoping review within an institutional ethnography conceptual framework. In the fourth chapter, I use Bacchi’s “What’s the Problem Represented to Be?” analytical tool to structure the reading of aging in place policies to examine the degree to which these policies acknowledge the work families do in the home to support an older adult to age at home. Results from the studies reveal a disjuncture between the ways that families experience information in their everyday lives and the ways that information is understood in the remaining articles. Information is mobilized by academic researchers and aging in place policies as an intervention or tool to enable caregivers to support older adults to age in place for as long as possible. Aging in place is ultimately conceived of as an ideological code that socially organizes and structures a particular way of understanding information, one that centers on informing to care. Whereas families view information as inextricably linked to their care work, policies and articles frame information as separate and outside of care.