When the Purpose is the Process: Designing for Caregiving Relationships

Unpaid caregivers make up an emerging market that spans most industries. The number of people who assist, accompany, provide for, love, share with, or otherwise support their (mostly) elderly relatives or friends who live with acute or chronic health conditions has been rising steadily throughout the world, inspiring a wide range of products and services that cater to the needs of those who have responsibilities of care. And yet the notion of care is barely understood; on the one hand, care is treated as a set of purely mechanical tasks that must be completed and checked off a list, while on the other hand, it is seen as a psychologically fraught emotional experience that is too intangible and too personal to adequately understand.

The same faulty assumptions prevail on both sides of this spectrum. First, the caregiver is seen as burdened with the task of providing care; in this conception, they must fulfill this responsibility at great cost to their own wellbeing. Second, it is assumed that all caregivers are focused on a singular purpose: keeping the person for whom they care alive, independent, and even “productive” for as long as they can. Products and services for caregivers respond to these imagined needs. They aim to ease the burden of caregiving tasks by providing tips, tricks, and devices that will keep caregivers and their loved ones as independent of one another as possible, and as happy, self-realized, and purpose-driven as can be managed
 under the circumstances.

But caregiving can be understood in fuller, more nuanced ways. More importantly, it must be better understood if organizations are to respond appropriately to the growing need for caregiver support. There is a large and ever-growing body of research in the overlapping fields of anthropology, sociology, and gerontology that explores and elaborates on what we know and imagine about unpaid (sometimes called “family”) care. Specifically, social scientists have challenged the notion that the main goal of caregivers is to uphold rational, equal, and mutual exchanges with the person for whom they care.
 Such research questions whether a caregiver is really happiest when he or (most often) she can relate to her loved one in the same
way that she relates to other people in her life. Researchers are even unsettling the notion that happiness, as we most commonly understand it, is a goal of care at all.

The Ask

Recently, my anthropology team was tasked by a large US-based organization with reframing and refining a set of service offerings intended for caregivers, who make up a growing base of potential customers for other products and services that the organization provides. The organization was hopeful that improving their caregiving-specific services could help provide much-needed relief to caregivers while also attracting more people to their online and in-person sales events. With this goal in mind, we set out to understand the emotional journey of caregiving and the role that this organization could play in such a journey.

Our fieldwork quickly taught us that the lenses of emotion and journey were both missing the mark. Not only did we find that caregiving is expressed as a social relationship that only partially takes place in the realm of emotion and the psyche, but we also heard repeatedly in each of the five cities that we visited about how caregiving is never a linear journey with clearly defined phases or a fixed and consistent purpose. By letting go of the idea of an emotional journey and recasting our exploration as one that sought out the social and relational elements of care, we were able to really hear what was coming out of our discussions with caregivers across the US.

The Insight

While the rhetoric around caregiving sometimes
 sets up an ideal of “giving of oneself,” our research uncovered that caregivers’ stories are less about “giving” than they are about becoming. Whether they see the responsibility of care as a result of destiny, duty, or divine providence, the caregivers’ sense of self becomes bound up in their acts of caregiving. In other words, care is not just what they do, but who they are.

Furthermore, we saw caregivers’ persistent need to stay closely linked to the person for whom they care as part of a process of fusing one’s sense of self with
 the person who needs care. Although caregivers have considerable stress (over nuances, the healthcare system, the pressure of decision making, and the grief of losing a loved one), most of them indicated that 
they were not eager to leave these responsibilities behind and were very reluctant to pay another person to do 
the work of care. This means that even as some caregivers said that they value the opportunity to engage 
in “self-care” (e.g. by going to an exercise class or having time alone), the fact that their wellbeing is intertwined with that of another person indicates that tools for caregiving support must be designed specifically for
 those relationships.

So What?

So often, strategic design principles are based around an individual, either as the point of departure or as a target market. But people – and the social situations they inhabit – do not have clear boundaries, around themselves or around the processes in which they are engaged. For all of their promises to use empathy in order to get to the heart of what is needed, innovators can be surprisingly blind to the empathy of the people for whom they design. This blindness is particularly unhelpful in service design for caregivers, as it is a world in which social interaction, empathic relationships, and the process of blurring the boundaries of the self are especially prevalent. By leaving aside familiar notions of rationality, independence, and the individual, those who design for care can provide solutions that operate better on the ground and – perhaps even more importantly – feel right to the people who are doing the difficult, complex, and important work of care.

the author

Maya Shapiro

Dr. Maya Shapiro is a resident anthropologist at Idea Couture.