Abstract: Illness Identity and Ongoing Communication: Testing a New Typology

◆ Heather L. Voorhees, University of Texas at Austin
◆ Angela L. Palmer-Wackerly, University of Nebraska-Lincoln

One-half of U.S. adults cope with chronic illness (Ward, Schiller, & Goodman, 2014). Consequently, researchers have studied illness identity (how a patient incorporates illness into their overall sense of self) and how illness identity impacts communicative behavior. Due to the ongoing nature of chronic illness, these patients often find themselves continually communicating illness-related information over several years (or decades). Extant research mostly explores how people initially decide to disclose illness-related information (e.g. Barned, Stinzi, Mack, & O’Doherty, 2016; Ngwenya, Farquhar & Ewing, 2016). The current study examines how people with chronic conditions continuously communicate about their illness to better understand how they create and maintain illness identities.

Using the Communication Theory of Identity (CTI; Hecht, 1993), this study—the second phase of an exploratory sequential mixed-methods study—employed an online survey to test the Typology of Illness Identity Management Communication (Author, under review), created in the first, qualitative phase. The four-quadrant Typology features two axes, personal illness identity (non)acceptance and relational illness identity (non)acceptance, which create four types: Accepted, Unaccepted, Protected and Ascribed. For example, the Protected type represents the combination of personal illness identity acceptance and relational illness identity non-acceptance. Each type implies unique communication behaviors; therefore, we created a new, 16-item Illness Identity Communication Questionnaire, with each item representing a behavior and four items corresponding with each type. Our research questions were:

RQ1: How does a person’s personal illness identity (non)acceptance relate to the behaviors on the Illness Identity Communication Questionnaire?
RQ2: How does a person’s relational illness identity (non)acceptance relate to the behaviors on the Illness Identity Communication Questionnaire?
RQ3: Based on the combination of personal and relational illness identity (non)acceptance, how will each behavior on the Illness Identity Communication

Questionnaire relate to the Accepted, Unaccepted, Protected and Ascribed types of the Typology of Illness Identity Management Communication?

Participants (N = 252) included adults with any diagnosed chronic illness, recruited in person and via reddit and respondent-driven sampling. We measured personal illness identity (non)acceptance (adapted from Oris et al., 2016) and created a new Relational Illness Identity (Non)Acceptance Scale. We also measured several control variables, such as time since symptoms began, general self-disclosure and illness centrality.

Using Pearson’s correlations, results showed that personal illness identity (non)acceptance significantly correlated with 11 of the 16 Illness Identity Communication Questionnaire behaviors (RQ1), and relational identity (non)acceptance significantly correlated with 10 of the 16 behaviors (RQ2). Results of a partial correlation showed that four of the 16 behaviors significantly related to a Typology type—three items with Accepted and one item with Unaccepted—based on their combination of personal and relational illness identity (non)acceptance (RQ3).

Thus, this novel study: (1) fills a gap in existing knowledge by exploring the relationship between two of CTI’s identity frames and ongoing illness-related communicative behavior; and (2) introduces and statistically validates a new Relational Illness Identity Scale with six items and two latent constructs. Our Typology, with future examination and testing, could empower patients to better understand illness identity, leading to more fruitful illness-related communication.