DOI
https://doi.org/10.25772/JE6N-9Y93
Author ORCID Identifier
https://orcid.org/0000-0003-1985-7461
Defense Date
2025
Document Type
Dissertation
Degree Name
Doctor of Philosophy
Department
Psychology
First Advisor
Robin Everhart, Ph.D.
Second Advisor
Jennifer Rohan, Ph.D.
Third Advisor
Rosalie Corona, Ph.D.
Fourth Advisor
Marcia Winter, Ph.D.
Fifth Advisor
Patricia Kinser, Ph.D., WHNP-BC, RN, FAAN
Abstract
Introduction: Adolescence is a pivotal developmental stage characterized by the development of independence, autonomy, and identity. A diagnosis of cancer can be disruptive to this process (Grinyer, 2009; Hazen et al., 2008; Neylon et al., 2023). How one incorporates cancer into their identity, or illness identity, has been associated with clinical outcomes, including adherence, life satisfaction, psychosocial functioning, and health-related quality of life and could be a target for supportive interventions aimed at adolescents with cancer (Commissariat et al., 2020; Luyckx et al., 2008, 2018; Meyer & Lamash, 2020; Oris et al., 2016; Raymaekers et al., 2020). Prior literature has utilized narrative and digital art techniques to explore difficult topics with children and adolescents (e.g.,Akard, Dietrich, Friedman, Gerhardt, et al., 2021; Akard, Dietrich, Friedman, Wray, et al., 2021; Akard et al., 2015). Thus, the present study explored illness identity development in adolescents diagnosed with cancer guided by the creation of digital avatars with two aims. 1) We aimed to qualitatively explore illness identity development over the course of cancer treatment. 2) We sought to understand how health-related quality of life (HRQoL) and psychological functioning would differ based on illness identity hypothesizing that participants who expressed a more adaptive illness identity would have higher scores on measurements of HRQoL and psychosocial functioning.
Methods: We analyzed data from a subset of 16 participants from a larger study who were diagnosed with cancer at age 12 or older (mean±SD age = 15.55±1.83, 50% Black, 62.5% male). Participants created digital avatars to represent themselves at 10 phases/contexts across treatment and completed accompanying interviews. Participants also completed the Pediatric Quality of Life Inventory (PedsQL): Generic Core Scale and DSM-5 Cross Cutting Symptom Measure at baseline and 6-months to measure HRQoL and psychosocial functioning respectively. Interview data was analyzed using a longitudinal framework approach to assess development-related themes, and interviews were coded as one of four illness identity dimensions previously described by Oris et al. (2016) to compare health-related quality of life and psychosocial functioning across groups.
Results: For Aim I, three development-related themes emerged from the data: Moving Forward and Circling Back, Fluctuating Autonomy and Control, and Different Context, Different Self. For Aim II, we found that 37.2% of the avatars were coded as adaptive and 27% were coded as maladaptive; 29.1% of the interviews could not be coded into either category. The majority of the “Present Me” interviews could not be coded into one of the four illness identity dimensions, and as such, we were unable to compare differences in psychological functioning and HRQoL between adaptive vs. maladaptive groups.
Conclusions: Adolescents in the present study described a process of illness identity development that focused on renegotiating old identities in the context of a cancer diagnosis, experiencing loss and gain of autonomy and control, and adjustment of identity in different contexts. We also found differences in patterns of the four previously described illness identity dimensions compared to other populations. Thus, illness identity may manifest differently in adolescents with cancer than other chronic illness groups. As such, clinicians working with adolescents with cancer should normalize exploration and change in adolescents’ understanding of how cancer fits into their identity. How to best support adolescents navigating illness identity development during cancer treatment should be explored through future research. One such strategy could be through the use of narrative techniques, which may be useful tools.
Rights
© The Author
Is Part Of
VCU University Archives
Is Part Of
VCU Theses and Dissertations
Date of Submission
7-31-2025