Supporting Collaboratively Constructed Independence

Abstract

Independence is a central concern for people in the care of many chronic conditions. It is often viewed as a goal that can be facilitated with the use of patient data. It is also viewed, especially from the medical side, as something an individual achieves. However, in the lived experience, independence is often a set of collaborative practices. In this paper, we unpack findings from an interview-based study of Spinal Cord Injury (SCI) self-care. We found that independence - both functional and in the form of effecting agency - must be co-constructed by the choices and activities of the care network, including the person with disability, caregivers, and clinicians. This collaboratively shaped independence also affects potential collection and use of data in support of self-care. We describe how collaboratively shaped independence informs requirements and constraints for the design of sensor-based networks for self-care in long-term chronic disability.

Data Checkers: A Grid-Based UI for Managing Patient-Generated Data Sharing to Support Collaborative Self-Care

“…These teams of family members, hired caregivers, and medical professionals collaborate in a loosely-coupled manner (Birnholtz and Jones-Rounds, 2010) to address health changes and develop care routines (Büyüktür et al, 2017;Ackerman et al, 2018). It is through collaboration among care team members that an individual can slowly develop her own independence (Birnholtz and Jones-Rounds, 2010;Caldeira et al, 2017;Büyüktür et al, 2018). Our work explores designs that can support individuals with chronic conditions to work with care teams while maintaining control over their care through data.…”

“…In addition to impression management and privacy concerns, prior research also suggests that maintaining fine-grained control over data is important for PCTs to negotiate the desired level of independence, namely the ability to fine-tune the details for sharing and how data are shared. This is particularly important, since they often want to acquire decisional independence and a sense of control over their lives (Büyüktür et al, 2018). Without such support, PCTs might be in a vulnerable position and lose control of their data to others or large institutions, such as healthcare systems.…”

“…While some researchers use "care networks" (e.g., Consolvo et al, 2004) to denote a broader collectivity of involved others, Gronvall and Verdezoto (2013) use "intimate care network" to include only family and the closest friends who participate in health management. In this paper, we use "care team" to denote an at-home care team that includes only the person with a health condition, caregivers (primary, secondary, hired/paid, and volunteers), and clinicians-those most immediately bound up in day-to-day care or in the necessary clinical care (Meade, 2009;Büyüktür et al, 2017Büyüktür et al, , 2018, and PCT to refer to a person with a health condition requiring a care team.…”

“…On the social side, the co-existence of different relationships (e.g., parent-child and caregiver-receiver) (Toscos et al, 2012;Büyüktür et al, 2018) and health conditions that are constantly evolving may require nuanced considerations by PCTs (Ackerman et al, 2018), including the sharing of data. Sharing data could support collaborative monitoring, but could also create challenging tensions, as people need to be allowed to make developmentally appropriate decisions about their lives and health management even as they rely on others' assistance with ADLs (Hong et al, 2016).…”

“…For instance, while a primary caregiver (e.g., a mother) may take on the responsibility to oversee care, her parent-child relationship with the PCT (the child) might affect the types of information the person is willing to share with her. The person might feel the need to maintain independence by controlling the data being shared with the parent, since having control over data is potentially a way for PCTs to obtain a sense of control over their lives (Unruh and Pratt, 2007;Nafus and Sherman, 2014;Büyüktür et al, 2018). At the same time, deterioration in the person's health might require sharing more data for the sake of safety.…”