INFORMATION WORLD MAPPING: TRACING THE SOCIAL ORGANIZATION OF INFORMATION WORK AND DEMENTIA CARE

abstract

Abstract The information work that informs and guides care is one invisible form of work done by family caregivers. The ability to navigate and use information enables family caregivers to be involved in the care and wellbeing of aging family members. Information world mapping, based on Sonnenwald’s information horizons, is a helpful data elicitation technique to make visible the hidden work of finding, using, and making sense of information. This methods-based paper explores the utility of this arts-based mapping exercise, both within an institutional ethnography method of inquiry and in eliciting family caregivers’ understandings and descriptions of their care-related information work. Thirteen family caregivers of community-dwelling older adults living with dementia were interviewed and were asked to draw maps of their information worlds. Maps illustrate caregivers’ unique and intricate interpretations of their work, depicting the information resources (family members, health care professionals, organizations, texts, technologies, and media) accessed and navigated. Caregivers also drew relationships, quotes, and self-care activities, revealing how information more broadly intersects with and simultaneously supports and complicates care work. The use of institutional ethnography to approach the maps’ creation privileged the everyday work of family caregivers. Good care is often positioned as a natural by-product of the widespread availability of good information. As the information world maps reveal, however, information work is not separate or outside of care, but is instead inextricably linked to care work and involves mobilizing and negotiating different types of information depending on the situation, resources available, timing, contexts or different individuals involved.