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Chronic Illness, Identity, and Recurring Disclosures: An Exploratory Sequential Mixed-Methods Research Study

Heather L Voorhees, University of Nebraska - Lincoln


It is estimated that one-half of all U.S. adults currently deal with chronic illness (Ward, Schiller, & Goodman, 2014), defined as conditions that “last a year or more and require ongoing medical attention or that limit activities of daily living” (CDC, 2018). These patients work to incorporate their illness into their overall sense of self—i.e., accept an “illness identity.” Due to the ongoing nature of chronic illness, people with such conditions often find themselves disclosing illness-related information regularly. Extant research explores how people decide to initially disclose illness-related information, such as a disease diagnosis or treatment plan (e.g. (Barned, Stinzi, Mack, & O’Doherty, 2016; Ngwenya, Farquhar & Ewing, 2016), but there is much we don’t know about the relationship, if any, between recurring disclosures and illness identity. This exploratory sequential mixed-methods study explores how and why chronically ill people decide what illness-related information to share throughout a long-term illness experience. Phase 1 is a qualitative study employing semi-structured interviews (N = 19) and constructivist grounded theory analysis. Data from this phase support the creation of a four-quadrant typology of communicative behaviors that chronically ill patients demonstrate when: (a) both their personal and relational illness identities are accepted (e.g. Accepted quadrant); (b) neither their personal nor their relational illness identities are accepted (e.g. Unaccepted quadrant); (c) personal illness identity is accepted, but relational illness identity is not (e.g. Protected quadrant); and (d) personal illness identity is not accepted but relational illness identity is (e.g. Ascribed quadrant). Phase 2 is a quantitative study (N = 252) using an online survey to test the typology and to determine if there is a structure to a person’s illness-related disclosure behavior when seeking social support for a chronic illness. Data from this phase partially support the typology and validate the newly created Relational Illness Identity Scale. The last portion of this dissertation includes: (a) a brief history of “illness identity,” (b) an argument in favor of connecting illness identity to the Communication Theory of Identity (Hecht, 1993), (c) descriptions of this study’s theoretical and pragmatic contributions, and (d) directions for future research.

Subject Area

Communication|Social psychology|Behavioral psychology

Recommended Citation

Voorhees, Heather L, "Chronic Illness, Identity, and Recurring Disclosures: An Exploratory Sequential Mixed-Methods Research Study" (2019). ETD collection for University of Nebraska-Lincoln. AAI22621381.