What makes health services usable? Insights from a qualitative study of caregivers of children with disabilities

Background The concept of usability from the field of user-centered design addresses the extent to which a system is easy to use, including under extreme conditions. Apart from applications to technologies, however, little attention has been given to understanding what shapes usability of health services more generally. Health service usability may impact the extent to which patients avail themselves of and benefit from those services. Purpose The aim of the study was to develop the concept of usability as it applies to health services, particularly for a high-need, complex patient population. Approach We conducted interviews and focus groups with 66 caregivers of children with disabilities and analyzed data through inductive coding and constant comparison. Results We find that before health services can be rendered usable for patients with complex health conditions, work is often required to develop trusting relationships with individual providers and to manage time demands and attendant challenges of physical access. In addition, our findings show that actions crucial to receiving benefits from one service often entail difficult tradeoffs either with other services or with other important features in the patient's life-world. Finally, we propose the concept of configuration to capture the complex interdependent arrangement of connections to multiple health services, often for multiple household members, and other life-world factors (e.g., employment, transportation, living conditions). These configurations are dynamic, fragile, and vulnerable to shocks-events that destabilize them, often negatively impacting the relative usability of services and of the entire configuration. Collectively, these findings illustrate health service usability as a relational, situated, emergent property rather than an inherent feature of the service itself. Practice Implications System-centered design perspectives produce services that are usable for the mythical "ideal"user. To be truly "patient centered,"designs must "decenter"the health service and recognize it as one component of the patient's life-world configuration.