Distributed Cognition in Cancer Treatment Decision Making: An Application of the DECIDE Decision-Making Styles Typology

Abstract

Distributed cognition occurs when cognitive and affective schemas are shared between two or more people during interpersonal discussion. Although extant research focuses on distributed cognition in decision making between health care providers and patients, studies show that caregivers are also highly influential in the treatment decisions of patients. However, there are little empirical data describing how and when families exert influence. The current article addresses this gap by examining decisional support in the context of cancer randomized clinical trial (RCT) decision making. Data are drawn from in-depth interviews with rural, Appalachian cancer patients ( N = 46). Analysis of transcript data yielded empirical support for four distinct models of health decision making. The implications of these findings for developing interventions to improve the quality of treatment decision making and overall well-being are discussed.

Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany

“…Since health-related information is highly sensitive, it is understandable that someone might not wish to share parts of it – even with persons very close. This finding supports previous research in the field of informal caregiving in the context of severe diseases or palliative treatment [ 33 , 34 ]. Mazurek et al (2017) figured out that nearly every interviewee they spoke to was fond of having the opportunity to administrate access to personal data stored in their devices.…”

How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

“…Patients commonly have cognitive limitations due to chemotherapy or the cancer itself that interfere with their ability to seek out, process, and remember complex information necessary to understand their cancer diagnosis and the available treatment choices [42–44]. Family members in our study appeared to compensate for this limitation by becoming a source of informational social support, which may, as some evidence suggests, alleviate some of the patient’s burden and distress [4, 45]. However, the nature and degree to which this assistance affects patients’ choices is largely unknown and warrants further investigation.…”

“…Three other decision partnering roles identified in this analysis related in part to the information seeking role were being a facilitator of shared understanding of the decision-making situation, being a values and illness framer discussant, and posing “what if” hypothetical scenarios. Participants described various efforts to facilitate communication and information exchange between themselves and the patient and other pertinent parties (i.e., healthcare clinicians, other family and friends) in order to promote a shared and informed understanding of events, which has been referred to by others as distributed cognition or “shared mind” [4, 47]. This type of communication, especially when targeted at values and illness framing, appeared intended in part to influence the process of decision-making or the selection of particular choices; hence future research might explore the social influence strategies employed by caregivers to impact healthcare decision-making (e.g., framing effects).…”

“…Our finding where several patients expressed that all of their healthcare and other decisions are delegated to their family caregivers likely represents one end of a spectrum of the type and extent of involvement patients desire from their family caregivers in assistance with healthcare decision-making. Patients may vary in the extent to which they wish to be autonomous in their healthcare decisions such that if a patient has a preference for high autonomy, then receiving unsolicited support from family members may be perceived negatively as controlling and condescending [4, 50]. On the other hand, if patients have a high preference for family and more distributed decision-making (e.g., Asian and African-American culture), then lack of shared decision-making from family may be negatively perceived [51].…”

“…Evidence suggests that these family members are performing critical functions in particular settings and contexts where patient decision-making is taking place, such as in provider encounters about treatment choices, [6] chronic illness treatment decisions, [8] and discussions about cancer clinical trial enrollment [4]. However, little has been reported on the roles families play across settings and contexts in cancer.…”