Diliara’s Research Story

Reading Time: 3 minutes

As a doctoral health communication student, I have always been interested in conducting applied research to translate my findings to develop interventions to help individuals in need in healthcare settings. When the time came to decide on my dissertation research topic, I knew I had to consider this intrinsic driver and combine it with the personal passion that emerged as a result of numerous research projects I have been involved in and research experiences I have had. 

My research training and experiences have primarily focused on translating research to interventions to enhance care and decision-making while reducing health inequities in oncology care. More specifically, I am interested in improving interpersonal health communication (between patients, caregivers, and families and between patients and clinicians) in the contexts of mental health, disease coping, and medical decision-making needs. I typically focus on three relational contexts (e.g., family caregiving, parent-child communication, and clinician-patient communication) in different cancer types (e.g., blood cancers, thyroid cancer). During my graduate training at the University of Florida, I had the privilege of working with The Leukemia and Lymphoma Society (LLS), in addition to working with oncology clinicians. We focused on individuals and their disease coping and decision-making needs and examined family coping and adjustment across the cancer continuum (e.g., prevention, diagnosis and treatment, survivorship or end-of-life). 

Seeing the needs of individuals, which were so unique depending on their developmental phases, I grew an interest in human development. That led me to take courses on the subject and research the literature on the population I am most interested in and resonate with the most as a young adult myself – adolescent and young adult (AYAs) cancer patients and survivors. Scouring the literature on AYAs demonstrated how AYA cancer patients’ and survivors’ needs are developmentally situated. Identity development/formation is core to AYAs’ healthy human development in adolescence and young adulthood. During this period of the lifespan, AYAs experience significant growth—cognitively, physically, socially, and emotionally—that is not without challenges socially and emotionally. In turn, a cancer diagnosis intensifies those developmental challenges and can impede individual progression toward vital age-related milestones (e.g., going to prom, learning to drive, going to college, forming intimate relationships, making decisions on their own) that coincide with AYAs becoming more independent from their parents. Because of the diagnosis and subsequent treatments, AYAs are stripped of opportunities to engage in activities like those which inform their identity development. Literature shows that this disruption of identity development results in AYA patients’/survivors’ identity distress which has become a major psychosocial concern and priority when attending to mental health distress in AYA oncology care. Considering that we learn about who we are (i.e., develop our identities) through interactions with our parents, clinicians, friends, teachers, and others in our close network, our identity formation is informed by social experiences. Yet, despite its significance in AYA oncology, I was shocked that such a vital developmental task remains unaddressed. We still lack interventions, especially communication interventions, that would place identity development and identity distress at the core of AYA patient-centered care.

That is why I wanted to address such an important, distinct aspect of AYA patients’ and survivors’ developmental needs in my dissertation research. I am a young adult. I am a scholar drawn to narrative research, who believes in the power of authentic, lived cancer narratives to change the AYA oncology care and address this utmost critical developmental need. This is my opportunity and desire to help prioritize the needs of AYAs’ marginalized voices in healthcare to reduce the disparity caused by the lack of developmental consideration in AYA oncology. It is vital to know how communication with parents and clinicians can be identity promoting or identity distressing for AYAs. I want to bring identity formation to the forefront of psycho-oncology care.

By : Diliara Bagautdinova