The role of HCI in informal caregivers’ lives has been a focus of research for some time. Yet to gain significance in HCI, are the implications of healthcare systems’ transformation into a personalised care paradigm, where citizens gain choice and control over the delivery of their care. We provide a first HCI paper to examine self-directed care budgets for disabled citizens, where care funding is controlled by the individual. We explore how digital technology can assist citizens, promoting peer support to create meaningful, personalised healthcare infrastructures. This qualitative study contributes insights from interviews and focus groups with 24 disabled citizens, informal caregivers and healthcare officers, to provide understanding of their experiences and practices. These insights highlight relational care, invisible labour, power struggles with authorities and how citizens seek socio-technical capability. We contribute design implications for self-directed care budgets and HCI research concerned with developing technologies that support this population.
https://dl.acm.org/doi/abs/10.1145/3491102.3517697
The ACM CHI Conference on Human Factors in Computing Systems (https://chi2022.acm.org/)