Exploring Experiences of Self-Directed Care Budgets

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.

Self-directed care budgets

Self-directed care budgets, also known as Personal Health Budgets (PHBs), have been developed to empower people needing high levels of long-term healthcare support, by granting them control over how they spend their care funding.

Yet, while PHBs bestow on citizens a wide range of control of their funds, they also offload responsibility to deliver the care they need onto the recipient when implemented without proper support.

The complexity of this end-to-end process demands support from both the Local Healthcare

Authorities (LHCA) officers and the PHB recipients to understand policy, law and operational processes, with the PHB recipient taking on various civic authorities that can take part in the PHB process.

Insights and recommendations for HCI design

We found PHBs can provide the relational, skilled and intensive care needed, however, the autonomy promised by PHBs is constrained by additional work, skills and knowledge that managing these budgets places on the recipient, as well as lack of support and the uneven power dynamics and mistrust at play between healthcare officers and budget recipients.

While our case was contextualised in England, our insights and recommendation for HCI design are relevant to other contexts in the global north, where personalised care policies in the form of PHBs are applied. In particular we recommend that future work explores the distresses and burdens that arise from citizens managing their budgets, by extending peer-to-peer support from social media messaging, onwards to practical support through sharing of peer-produced care-related documents.

This sharing of practices should be inclusive of both citizen and healthcare authorities, thereby exposing the invisible care work. We acknowledge the difficulties in crafting the safe design spaces necessary amidst the conflict and tensions between citizen and civic, this being a challenge as HCI commits to Participatory Design’s democratic considerations, though in part mitigated by our methodological suggestions.

The digital transformation of healthcare presents considerable risk in this domain. Attempting to automate decisioning that is already embedded in ambiguity, personal relationships, and the negative aspects of discretion, is liable to maintain or deepen the existing distance, inequity, unfairness and injustices.

Participation from both sides is essential, where HCI can continue to deploy its recent history on delivering social justice within the citizen-civic space.