Information behavior and social control: Toward an understanding of conflictual information behavior in families managing chronic illness

Abstract

The relationship between information and control interests social scientists; however, much prior work has focused on organizations rather than families. Work on interactive information behaviors has also focused on organizations and on collaboration rather than conflict. Therefore, in families managing chronic illness, we investigated information behaviors in the context of health‐related social control and the impact of control on patient health behavior. We conducted a qualitative analysis of interviews with 38 family groups and 97 individuals over 2 years. Findings revealed conflictual information behavior, which led to competitions for control and influence between family members and patients. In response to perceived patient health behavior‐related problems, family members sought, shared, and used information for social control of patients by enforcing norms, leveraging expertise, performing surveillance, and structuring the environment. These behaviors clashed with patients' interests and perspectives drawn from their own information acquisition. Patients responded by assessing family‐presented information and using information to resist or appease norm enforcement, refute or agree with expertise, and permit or block surveillance. Over time, some patient behaviors changed; alternatively, patients blocked family access to information about themselves, or family members retreated. The results challenge presumptions of benefit and harmony that have characterized much prior information behavior research.

Contexts and Outcomes of Proxy Online Health Information Seeking: Mixed Studies Review With Framework Synthesis

“…Proxy seekers used OHI to better understand someone else’s illness or to help themselves feel more empowered in their role as caregivers [ 49 , 64 , 65 , 67 ]. Several studies reported the sharing of information between caregiver and patient either directly by sending them a link or printout or indirectly by discussing the information found [ 49 , 50 , 57 , 60 , 64 , 68 ]. One study describes sharing and resharing the information among a social network so that it reaches a larger number of people [ 55 ] or so that a larger number of people are involved in making sense of the information [ 57 ].…”

“…They used the information to change that person’s lifestyle; for example, mothers in 1 study cooked healthier food and encourage their families to walk together as a form of exercise [ 55 ]. In another study, the authors report that family members used the information to exert control on the patient, using techniques such as pushing or guilting [ 68 ].…”

“…There were 2 studies that reported that the proxy seekers themselves experienced more anxiety, sometimes because of information overload [ 65 , 66 ]. The proxy seeker and the person did not always have the same approach to OHI: in situations where the person did not want to “know” or ignored the information, this led to tensions and conflict [ 54 , 68 ].…”

A novel information sharing framework for people living with type-2 diabetes in the context of a group education program

“…Frequently, the management of chronic disease involves a fundamental change in everyday behaviours with most of the burden falling outside of supervised healthcare environments [ 1 ]. A type-2 diabetes diagnosis, for example, requires significant lifestyle changes including ongoing self-management and self-awareness [ 2 ].…”

Predicting Surrogates' Health Information Seeking Behavior via Information Source and Information Evaluation

“…Nevertheless, surrogate information seeking does not always lead to positive outcomes. Some people may use surrogate information seeking and information sharing to socially control their family members, which can negatively affect the relationship between the two parties (Brown & Veinot, 2020). Regardless outcomes, surrogate information seeking poses a challenge to surrogate seekers as they need to understand others' information needs and then seek information from various online sources, evaluate, and deliver relevant information.…”