Atlas of Caregiving embraces human-centered curiosity to explore the everyday practice of family caregiving. Our Core Research applies new methods to collecting, analyzing, and presenting detailed contextual data about the lived experience of providing care. We believe that improving outcomes for caregivers depends just as much on understanding their relationships and networks as it does on understanding their behaviors.
Atlas of Caregiving sprang from the findings of a 2014 expert roundtable on family caregiving. The roundtable’s report Catalyzing Technology to Support Family Caregiving highlighted key opportunities and challenges. A major outcome of the roundtable was the group’s acknowledgement of the relative dearth of data about family caregiving. It seemed unlikely that major innovations could occur without a better understanding of families’ situations and challenges. But, how could richer data be gathered?
Funded by the Robert Wood Johnson Foundation, we embarked on a year-long Pilot Study meant to explore how a new approach to research could enable a truly comprehensive look at family caregivers’ lives. Completed in late 2015, the study received a positive cross-sector response, presenting valuable new data and insights while offering actionable information to caregivers and their communities.
Studying family caregiving this richly is a new field of science, and we consider the exploration of how to undertake this study an important part of our work. We regularly work on developing new methods, metrics, and models for our research, and we learn as our scientific ‘toolbox’ continues to evolve. Examining what the data implies, and sharing our insights widely, is a critical component of our research.
To us, this work is not just about observing a group of research participants. We are committed to learning with the families who participate in our research, not just about them. We collaborate closely with caregivers’ communities and the organizations that serve them, aligning our efforts for relevant impact. While we have deep expertise in research and caregiving, we recognize that the truest experts are the caregivers and their families themselves.
Research at Atlas extends beyond industry experts and puts the tools for data-driven improvement in the hands of everyday people. Other initiatives in our Core Research (Mapping Yourself, Atlas CareMap Research) empower caregivers and encourage self-awareness by providing frameworks for them to collect and interpret their own data.