Explicating the Social Organization of Family Caregivers’ Information Work

Objectives

Seeking, interpreting, managing and sharing information (examples of activities considered as information work) are key components of care provision. Information work saturates every facet of caregiving, providing tools for coping, problem solving and dealing with uncertainty through knowledge and support. Family caregivers’ information work is increasing in quantity and intensity given the prevailing assumption that information provision is sufficient to produce improved care outcomes and the trend towards the informatization of care, that is, the provision of information used as a means to gradually marginalize care.

To begin to map the social organization (and invisibility) of family caregivers' information work, interviews with family caregivers and paid senior service providers made visible the ways in which aging in place policies and administration invisibly coordinate caregivers’ access to and use of information needed to provide care.

Method

Guided by Dorothy Smith’s institutional ethnography method of inquiry, thirteen family caregivers of community-dwelling older adults living with dementia were interviewed. Embedded in the interviewing process, building on Sonnenwald’s information horizons (1999), caregivers drew maps of their information worlds while speaking to their everyday information work, including those they interact with and are influenced by to get their information work done. Another set of interviews with senior service providers were used to question how senior service organizations determine how, when and in what format to deliver information to family care providers.

Results & Conclusions

Interviews and maps of caregivers’ information work combined with interviews with paid senior service providers made visible the complex ways the institutional complex surrounding aging in place policies and administration enter into and coordinate caregivers’ information work. This study signifies an innovative shift in the ways the complexities of searching for and using information on behalf of another are understood as a means to more responsively support the information needs of family caregivers.