A new study suggests that in addition to the often emotionally and physically challenging care they provide, caregivers should be seen as navigators of complex systems ostensibly designed to provide them resources and support. While the formal supports these systems can provide may offer caregivers relief and assistance, interviews reveal that the systems in which such supports are embedded can “exacerbate the stress and structural burden experienced by carers.”
In addition to the work they perform for their care recipients, family caregivers often function as care managers, which can require finding and evaluating formal care options, advocating with providers, or coordinating informal support. This becomes even more challenging when services are fragmented, overly bureaucratic, or uncoordinated. This study documents caregivers’ experiences navigating such systems and the resulting consequences.
Overall, participants described the system as “opaque, mysterious and lacking transparency.” The researchers also identified three main types of navigation challenges experienced by caregivers. The first they labeled “digging and hunting,” which involves learning what options exist and how to access them. This work was often complicated by vague or conflicting information. The authors note that being resourceful was imperative for gathering information, which privileged those who were persistent, asked questions, and could utilize social networks. Another challenge was identifying key providers.
The next navigation challenge was “pushing through and working around,” where caregivers encountered inflexible, overly complex policies, restrictive eligibility, or long waits. This could apply to something as simple as acquiring compression stockings. To get what they needed, caregivers had to actively and persistently advocate for their needs or find alternative solutions.
The last navigation challenge was “navigating fragmentation,” which involved coordinating services and ensuring a smooth flow of care. Here, caregivers must link various services systems and often serve as the primary source of knowledge of the care recipient across organizations. This requires them to be organized and diligent in coordinating and monitoring care.
The authors note that two big questions emerge from this research: 1) How can this navigation be made easier? and 2) Are there ways that the need for some of this navigation can be eliminated?