A qualitative assessment of body image in adolescents and young adults (AYAs) with cancer

Abstract

Context Among adolescents and young adults (AYAs), cancer and its treatment can disturb body image in distinct ways compared to younger or older individuals. Objective Since AYA body image is not well understood, this study was designed to develop a conceptual framework for body image in AYAs with cancer. Methods Concept elicitation interviews were conducted with 36 AYA patients [10 adolescents (15–17 years), 12 emerging adults (18–25 years), 14 young adults (26–39 years)] and health care providers (n = 36). The constant comparative method was used to analyze for themes and properties, with themes considered saturated if they were present and salient across participant sets. Results Twenty themes emerged from participant data. Three themes illustrate a shared understanding of patients' experience of body image: (1) physical changes produce shifts in identity and experience of self; (2) precancer body image shapes how the AYA experiences cancer‐related physical changes, and (3) changes to the body are upsetting. Nine themes were unique to patients while eight themes were unique to providers. Patient body image experiences were found to evolve over time, largely affected by concerns about how others view them. Providers appeared attuned to AYA patient body image but recognized that it is not systematically addressed with patients. Conclusion More striking than differences between patient groups is the consistency of themes that emerged. The conceptual framework of body image developed from these data offers an important step toward addressing body image concerns for AYA patients.

A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study

“…Different studies have supported the need of understanding the complexity of body image within the AYA population [ 4 , 11 , 13 , 21 ]. A recent scoping review by Vani et al [ 13 ] showed that existing quantitative studies are mainly addressing body image from the perspective of tumor histology, focusing on specific cancer groups, rather than from an AYA-specific perspective [ 13 , 14 ].…”

“…A recent scoping review by Vani et al [ 13 ] showed that existing quantitative studies are mainly addressing body image from the perspective of tumor histology, focusing on specific cancer groups, rather than from an AYA-specific perspective [ 13 , 14 ]. The available studies with an age-specific focus have a qualitative design, indicating that currently little is known about the prevalence and what factors are associated with a negative body image [ 21 , 22 , 23 , 24 ]. Moreover, despite the possible long-term effects of cancer on body image, within the AYA literature limited attention has been given to long-term AYA cancer survivors (>five years after diagnosis) [ 4 , 13 ].…”

The relationship between unmet cancer care needs and self-rated health among adolescents and young adults with cancer

“…Multinomial logistic regression revealed that the unmet daily life needs, e.g., the ability to cope with physical and appearance changes and the ability to manage medication and side effects, were significantly associated with lower odds of reporting good or very good/excellent health versus fair or poor health, suggesting these needs negatively impact AYA cancer survivors’ general health. [ 32 ] Many AYAs, for example, report cancer-related post-treatment fatigue as one of the most prevalent and severe symptoms they experience, and cancer-related fatigues are persistently disruptive to their sleep quality and motivation. [ 33 ] Similarly, Brock and colleagues (2022) found that achieving maximum work ability is a major challenge for AYAs, and many reported compromised cognitive capacity (e.g., poor concentration or low attention span) for work.…”

Emotional Distress and Financial Toxicity in Younger Adult Patients Undergoing Oncologic Surgery

“…In addition, because infertility ties into YA body image as well as their sense of self-worth, another study highlighted the psychological impact of fertility on body image by demonstrating that up to 25% of YA pursued fertility preservation before their cancer treatment 21. Moreover, previous studies have shown that changes in physical appearance can increase emotional distress, reduce quality of life, and contribute to social isolation and feeling different from their peers without cancer 22–24. These changes include new stomas, prosthetics, hair loss, and surgical scars.…”