Abstract: What Happens when Illness becomes a Reality? Individuals’ Evolving Uncertainty Management about Family Members’ Health

◆ Charee Thompson, University of Illinois at Urbana-Champaign
◆ Lynsey Romo, North Carolina State University
◆ Manuel Pulido, University of Illinois at Urbana-Champaign
◆ Danni Liao, University of Illinois at Urbana-Champaign
◆ Sara Babu, University of Illinois at Urbana-Champaign

When illness becomes a reality in families, some questions about whether and to what extent a family member is truly ill are resolved. Yet, some uncertainties may remain, change form, or “chain-out” to other forms of uncertainty (Babrow, 2001; Brashers, 2001). Current research lacks the temporal orientation necessary to better understand the ways in which illness uncertainty is (not) managed in families. To elucidate this process, we interviewed individuals who did not initially believe a family member’s illness(es), but began to believe to some extent. Our guiding research questions were: RQ1: How do meanings and sources of uncertainty evolve? RQ2: How do individuals’ strategies for managing their uncertainty shift?
We recruited 33 US adults (M age = 39.85, SD = 11.33; 51.5% male) across the US through Amazon’s Mechanical Turk and paid them $15US for an interview conducted through Google Voice. We asked participants to reflect upon the process by which they started believing their family members’ health issues existed or were more severe, focusing on the evolution of their uncertainty and uncertainty management.
For RQ1, we found that once participants accepted or began to accept the reality of their family member’s illness, they continued to experience uncertainty in medical, social, and personal domains. Concerning medical uncertainty, some still questioned the diagnosis and severity of the illness; some were unsure about how to manage or treat the illness and its course; some did not know what to expect the illness to “look like” in their family member’s behaviors; and some wondered if they were also susceptible to the illness.
Participants also reflected on feelings of social uncertainty, describing how they did not know how to communicate or support their family members as persons living with mental illness, for example. Some expressed uncertainty about the kind of relationship they could have with their family member moving forward.
Finally, participants described having personal uncertainty, experiencing role and identity ambiguity in the relationship; for instance, how to balance emergent caregiving with their other roles, e.g., spouse, child.
For RQ2, we found that participants managed their ongoing uncertainty both intra- and interpersonally. Intrapersonally, participants described managing regret, sadness, and guilt for not believing family members and attending to their health issues sooner. They also described trusting the process and being patient with their family member.
Interpersonally, participants shared how they adapted to what became chronic uncertainty by providing support and coping with their family member. This negotiation included coordinating with other family members to provide support and to seek and exchange information. It also included re-envisioning relationships with ill family members, for instance, finding creative ways to spend time together given family members’ health limitations.
Our emphasis on the evolving nature of uncertainty paints a more complex and realistic picture of how uncertainty is experienced and managed in families as the reality of illness comes into focus. This study has implications for theorizing by illustrating how uncertainty management is an ongoing, layered, and often non-linear process that people negotiate intrapersonally and interpersonally with their family members.