1 Overview
Working with Dr. Hee Rin Lee, I am using a systematic, codebook-based review to examine how caregivers appear in health-related HCI research—not just as an extra user group, but as actors embedded in relationships of care, dependence, and authority. Starting from a broad corpus of CHI and related venues, I developed an initial coding scheme that tracks who is recruited (caregivers, patients, both), how their roles are described, what kinds of contextual knowledge each is treated as bringing, and whether the relationship between them is treated as background or as something to be designed with. In dual-coder sessions, every ambiguous label—“family member,” “carer,” “informal supporter,” “primary user”—became a prompt to refine the codebook, so that we could systematically capture when studies treat care as a one-directional burden and when they acknowledge reciprocity, negotiation, and everyday family life.
As the coding progressed, I began to map patterns of involvement and power: design methods where caregivers are consulted only as informants about patient needs versus those where caregivers and care recipients co-shape technologies; studies that quietly reproduce clinical hierarchies by privileging professional perspectives; and rare cases that surface conflict, tension, or mutual dependence between caregivers and patients rather than assuming aligned goals. I am synthesizing these findings into themes and tables that contrast representation, design roles, and power relations across studies, using them to articulate what is currently missing when HCI health work frames “the user” too narrowly. The goal is to provide concrete guidance for future caregiver-centered HCI—how to recruit and report on caregivers and patients as entangled actors, how to design methods that keep power visible, and how to avoid technologies that unintentionally reinforce simplified or one-directional views of care.