The Information Practices of Canadian Family Caregivers of People with Down Syndrome

Abstract

This literature review was conducted as part of a research study, the purpose of which was to understand how Canadian family (unpaid) caregivers of people with Down syndrome (DS) find, understand, use, share, and manage information to meet their needs and the complex needs of those in their care. Unpaid caregivers are vital to society but are undervalued. The need for caregiving is growing as people with Down syndrome are living longer and are likely to experience dementia as they age; the responsibility for caregiving is being increasingly transferred to families. Information is crucial for empowering and enabling caregivers. In conducting this review, I found that caregiving information work is stressful, mostly done by women, requires robust networks, and links to troubling social and economic trends.