”I feel like I need to split myself in half”: using role theory to design for parents as caregiving teams in the children’s hospital

Abstract

When their child is hospitalized, parents take on new caregiving roles, in addition to their existing home and work-related responsibilities. Previous CSCW research has shown how technologies can support caregiving, but more research is needed to systematically understand how technology could support parents and other family caregivers as they adopt new coordination roles in their collaborations with each other. This paper reports findings from an interview study with parents of children hospitalized for cancer treatment. We used the Role Theory framework from the social sciences to show how parents adopt and enact caregiving roles during hospitalization and the challenges they experience as they adapt to this stressful situation. We show how parents experience ‘role strain’ as they attempt to divide caregiving work and introduce the concept of ‘inter-caregiver information disparity.’ We propose design opportunities for caregiving coordination technologies to better support caregiving roles in multi-caregiver teams.

Publication
Companion Publication of the 2022 Conference on Computer Supported Cooperative Work and Social Computing