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.
Keywords: adolescent, body image, cancer, health personnel, neoplasms, oncology, PROMIS, psychooncology, young adult
1 |. BACKGROUND
There are more than 900,000 new cancer diagnoses annually in adolescents and young adults (AYAs; ages 15–39) worldwide,1 and nearly two million people in the United States of America are living with or have been diagnosed with cancer as an AYA.2 Cancer is the leading cause of disease-related death in AYAs and six times more likely to affect AYAs than pediatric patients (ages <15).3 In addition, AYAs face unique challenges given the physical, cognitive, and psychosocial developmental milestones that may be disrupted by a cancer diagnosis.4 This leads to a greater risk of significant psychological distress compared to adults (ages ≥40) with cancer.5 Assessing and understanding the unique needs and health-related quality of life (HRQOL) concerns of AYAs as they manage their cancer experience is essential to optimize and tailor supportive care.3,6
This study is a component of a larger project with aims toward expanding the use of PROMIS® (Patient-Reported Outcomes Measurement Information System) to provide reliable and valid assessment of HRQOL concerns for AYA cancer survivors including body image, fertility, and financial burden.6 Body image is recognized as a critical psychosocial issue in the oncology setting with growing research addressing body image challenges for adult cancer survivors.7 However, the impact of changes in body image on HRQOL has been given limited attention in the AYA literature.8 Body image has been defined as the multidimensional psychological embodiment of one’s physical appearance9 and a multifaceted concept involving perceptions, thoughts, and feelings about the entire body and its functioning.10 Body image emerges during the formative years of adolescence and young adulthood.11 An AYA’s body may undergo significant alterations in appearance and functioning as a result of cancer progression and/or treatment during these crucial developmental years,12,13,14 and the short term (e.g., hair loss) or long term (e.g., scarring) psychological impact may be quite disruptive. Any measure of body image for AYA cancer survivors would need to be developmentally appropriate, account for population specific experiences of body image,12 and have potential clinical relevance. As such, it is vital to understand body image from AYA survivor and provider perspectives if future measures of body image for AYAs are to be developed. The purpose of the present study is to provide an examination of body image following cancer diagnosis within AYAs and AYA oncology service providers. Themes arising from this examination will inform future conceptualization and are the first step to intervention and measurement development in this population.
2 |. METHODS
2.1 |. Patient interviews
Patients were eligible if they were initially diagnosed with cancer as an AYA and were currently aged 15 to 39 years, able to read and understand English, and receiving curative treatment or currently up to 5 years of posttreatment. AYA patients were excluded if they were diagnosed with basal cell skin cancer; experienced a cancer recurrence; were currently receiving palliative or hospice care; had an infertility diagnosis prior to their cancer diagnosis, or reported a significant psychiatric history (i.e., “ever been hospitalized for a psychiatric illness”). Potentially eligible patients were identified through review of their electronic medical record at the participating cancer centers and provider referrals.
Interested patients were screened to confirm eligibility and then provided informed consent. Semistructured interviews were conducted with 36 AYA patients seen at either Wake Forest Baptist Comprehensive Cancer Center (WFBCCC) or the Robert H. Lurie Comprehensive Cancer Center of Northwestern University (RHLCCC) located in the United States of America. Consistent with the prior literature,15 sampling was stratified by developmental group [10 adolescents (15–17 years), 12 emerging adults (18–25 years), 14 young adults (26–39 years)]. Interviews with WFBCCC patients were conducted in-person (n = 29), while interviews with RHLCCC patients were conducted by HIPPA compliant video call (n = 4) or phone (n = 3). Interviews were conducted by master’s level research associates with training in qualitative methods from the Qualitative and Patient-Reported Outcomes Shared Resource (Q-PRO) of the WFBCCC. Interviews lasted an average of 60 min and were conducted between 13 February 2018 and 5 September 2019. All procedures were approved by Institutional Review Boards at participating institutions (WFBCCC: IRB00044525; RHLCCC: STU00208207).
2.2 |. Provider interviews
Multidisciplinary healthcare providers were identified to participate, including oncology providers, psychosocial providers, reproductive endocrinologists, and other healthcare professionals with relevant expertise. A detailed listing of provider type is provided in Table 1. Providers were eligible if they provided care to AYAs, had been practicing ≥2 years, and were English-speaking.
TABLE 1.
Respondent characteristicsa by group (N = 72)
| Adolescents (n = 10) | Emerging adults (n = 12) | Young adults (n = 14) | Providers (n = 36) | |
|---|---|---|---|---|
| Gender | ||||
| Male | 5 (50%) | 8 (67%) | 3 (21%) | 9 (25%) |
| Female | 5 (50%) | 4 (33%) | 11 (79%) | 27 (75%) |
| Age in years | ||||
| Mean (SD) range | 16.5 (0.53) 16–17 | 21.17 (1.59) 18–23 | 33.07 (4.10) 27–39 | 45.70 (9.70) 26–68 |
| Race | ||||
| White or European American | 6 (60%) | 9 (75%) | 10 (71%) | - |
| Black or African American | 1 (10%) | 2 (17%) | 2 (14%) | - |
| Asian | 0 (0%) | 0 (0%) | 1 (7%) | - |
| American Indian or Alaska Native | 0 (0%) | 0 (0%) | 1 (7%) | - |
| More than one race | 2 (20%) | 0 (0%) | 0 (0%) | |
| Other | 1 (10%) | 1 (8%) | 0 (0%) | - |
| Ethnicity | ||||
| Hispanic/Latinx | 2 (20%) | 3 (25%) | 4 (29%) | - |
| Cancer diagnosis (n) | Leukemia (3) | Leukemia (5) | Lymphoma (4) | |
| Lymphoma (2) | Lymphoma (1) | Breast (3) | ||
| Osteosarcoma (2) | Sarcoma (1) | Leukemia (2) | ||
| Sarcoma (2) | Adenocarcinoma (1) | Brain (1) | ||
| Germ cell (1) | Breast (1) | Cervical (1) | ||
| Melanoma (1) | Colorectal (1) | |||
| Testicular (1) | Testicular (1) | |||
| Thyroid (1) | Thyroid (1) | |||
| Treatment status | ||||
| On | 7 (70%) | 6 (50%) | 7 (50%) | - |
| Off | 3 (30%) | 6 (50%) | 7 (50%) | - |
| Months since diagnosis | ||||
| Mean (SD) range | 7.90 (5.17) 1–16 | 27.58 (20.28) 4–64 | 17.07 (21.00) 1–74 | - |
| Provider type (n, %) | ||||
| Physician | - | - | - | 16 (44%) |
| Psychologist or counselor | - | - | - | 7 (19%) |
| Social worker | - | - | - | 6 (17%) |
| Nurse | - | - | - | 5 (14%) |
| Navigator or coordinator | - | - | - | 2 (6%) |
Number and (%) unless otherwise specified.
AYA providers were identified through national AYA initiatives or working groups (NCCN guidelines, National Clinical Trials Network, NCI Community Oncology Research Program, Teen Cancer America) and/or leadership of an AYA program at their institution. Semistructured interviews were conducted by phone with 36 AYA providers. Interviews lasted 36 min on average and were conducted between 25 April 2018 and 28 June 2019.
2.3 |. Interview guide
An interview guide was developed based upon prior literature and clinical expertise of the team. Patient and provider interview guides included questions on three domains: fertility, body image, and financial burden. All interviews were audio recorded. See Appendix for the body image interview guide.
2.4 |. Data analysis
All interviews were transcribed, de-identified, and reviewed against the audio to ensure accuracy. Atlas.ti (Version 7.5) was used to store and manage the data. A codebook was developed in collaboration with an investigator from the study team (MRC). Each transcript was reviewed by at least two Q-PRO research associates and coded using the standardized codebook. A total of 55% of interviews were cross-coded by two Q-PRO researchers. The codebook was revised iteratively based on emergent themes. Constant comparative methods16 were used to assess similarities and differences of each interview with the previously identified themes. Q-PRO researchers met regularly with the investigator from the study team to discuss emerging concepts and themes.
Final analyses were stratified into four groups, by patient age group and provider. Data saturation was evaluated at the theme level within each strata. Interviews within each strata were divided into sets of four based on chronological order. Themes were considered saturated if they were present and salient in at least one interview within each set.17 A conceptual framework was then developed based upon prior literature, the data from this study, and expert opinion.
3 |. RESULTS
Participants were majority female (56%) and non-Hispanic white (56%), representing a wide array of cancer diagnoses. Providers were predominantly women (75%), and 44% were physicians. Table 1 reports the participant characteristics in detail, while the Supplemental Table in the Appendix provides an overview of the themes that emerged by group to allow for comparison between groups. Twenty themes emerged from the data provided by participants, with eight of these emerging exclusively from provider data. Other themes varied by group. The resulting conceptual framework that emerged from the data for understanding body image changes, consequences, and impact on quality of life in adolescent and young adult cancer survivors can be seen in Figure 1.
FIGURE 1.
Conceptual model for understanding body image changes, consequences, and impact on quality of life in adolescent and young adult cancer survivors
4 |. THEMES EMERGENT FROM PATIENTS AND PROVIDERS
4.1 |. Physical changes produce shifts in identity and experience of self
Changes in appearance and function affected AYAs’ sense of identity across all age groups. For some, their gender identity or age influences how they experience these changes. Providers explained that perception of self/identity appears to change in response to cancer diagnosis and treatment.
Emerging Adult ~ “It’s just I think still knowing that that’s always going to be a part of you, and I don’t think it will ever … Your scars will never go away so it’s kind of always like when you go to take a shower or something, you’ll always see it. But I think it also made me stronger as a person.”
4.2 |. Precancer body image shapes how AYAs experience cancer-related physical changes
All groups reported a range of positive and negative body images before their cancer diagnoses. Some participants had existing stress related to body image while others took pride in their physical appearance. These pre-existing perceptions of their bodies influenced how adolescents reacted to cancer-related changes. Providers indicated that a positive body image before cancer is likely to mitigate the effects of cancer/its treatment on body image, whereas a negative body image prior to diagnosis is likely to be amplified during cancer/its treatment.
Young Adult ~ “My body image has struggled throughout the years, especially in college and with extra stress and things like that. So, I think that in general I’ve had a negative kind of view toward it, and the cancer kind of enhanced some of it.”
4.3 |. Changes to the body are upsetting
Adolescent participants reported a variety of emotional reactions to cancer-related changes to their bodies including shock, sadness, and fear that changes will be permanent. In contrast, two participants also noted feeling positive about losing weight as a side effect of cancer treatment. Young adult participants reported a variety of emotional reactions to cancer-related changes to their bodies including sadness, shock, loss of self-esteem, frustration, and anxiety. Some participants expressed that not knowing what changes to expect with their cancer treatment amplified their emotional experiences. Providers felt that AYA patients often react to changes in bodily appearance and function with a wide range of emotional responses. Patients and/or their bodily changes are described by providers as: distressed, uncomfortable, traumatic, powerful impactful, disruptive.
Adolescent ~ “It really hit me when I woke up one day, and then looked at my pillow, and there’s little balls of hair coming out. I didn’t know that it was going to do that, because they said it was a possibility that it could come out, and there was a chance that it might not. I was hoping that it might not, but it started to come out.”
5 |. THEMES EMERGENT FROM MORE THAN ONE PATIENT GROUP
5.1 |. AYAs employ psychological coping mechanisms to manage body image issues
Adolescent participants reported coping with changes to their bodies by practicing positivity and self-love, not caring what others think, and avoiding thinking about the changes. Emerging adults reported utilizing coping behaviors such as being intentional about practicing self-love or positivity and honoring their scars as “proof” of their cancer journey. Young adult participants reported coping with changes to their bodies by practicing positivity and self-love, not caring what others think, using humor, and avoiding thinking about the changes.
Young Adult ~ “I think that the positive is that I definitely found a way to be appreciative of my body during the healing process. It was definitely no easy feat recovering from surgery. I still experience pain. I think in part, it was more of a love and care for what my body was able to do and the healing process.”
5.2 |. AYAs experience physical changes and loss of function to their bodies during cancer treatment
All three AYA groups reported physical changes in body appearance and function including: hair loss; weight loss; weight gain; changes in skin complexion (acne clearing up, looking pale, dry skin), limb function; having to wear feeding tubes, PICC lines, medication balls; scars; bags under eyes; difficulty walking (need to use walker, temporary paralysis, need to wear braces), and loss of energy.
Emerging Adult ~ “It (chemo) would make your taste buds go away…Probably the taste buds (were the most impactful), because it would make you only be able to eat specific stuff. You’d crave something really bad. Then, when you would go to eat it, you just couldn’t because it tasted terrible…I couldn’t eat what I wanted because of my taste buds making it taste crappy…I think I lost 10 pounds in a week…”
5.3 |. Concerns about how others’ view them can mitigate or amplify body image-related distress for AYAs
Adolescents reported that other peoples’ negative reactions to their bodies influence participants’ cognitions about the cancer-related physical changes to their bodies. A few participants described negative reactions that reinforced self-consciousness about their bodies, which resulted in feelings of isolation. For some, the level of concern varies, depending on the relationship. Similarly, emerging adults reported it was important that others not feel sorry for them, so they try not to look sick. For young adults, concerns about how the public versus friends and family viewed them were distinct.
Adolescent ~ “At this point now, if they even call you skinny, or if they call you slim or anything, they’re kind of meaning it in a derogatory way, just because, ‘Oh no, you look really skinny. You need to eat something.’ I’ve never really had to deal with that before, because I’ve always been bigger. It’s just different. I don’t know if there could even be a good term at this point, because even if I’m eating right and eating like I’m supposed to be doing, but I’m skinnier than I used to be, people still look at that as it’s because you’re sick.”
5.4 |. AYAs employ behavioral coping mechanisms to manage body image issues
Adolescent and young adult participants reported coping with changes to their bodies by making efforts to take back control over their bodies, camouflaging problems, practicing avoidance, engaging in health promotion behaviors, and commemorating their cancer experiences. Young adult participants also reported coping with changes to their bodies by adjusting their treatment plans. Emerging adults reported utilizing many coping behaviors to be able to restore their sense of control over their bodies and regain a sense of normalcy.
Emerging Adult ~ “I completely changed my whole entire diet, health wise. So, I’ve been eating cleaner, no GMO, all organic stuff. It makes you feel better. And then just started working out because I was so self-conscious of what I looked like because I had short hair and I was like, “I have no muscle on me. I’m skin and bones, I look gross.” But kind of getting out of that and now I exercise almost every day and I’m the healthiest I’ve ever been…”
5.5 |. Body image shifts over time
Adolescent participants reported that some physical changes related to cancer were viewed as temporary and that their level of concern about physical changes shifted over time. Many young adult participants’ experiences with body image were reported to change throughout cancer treatment and during survivorship. Some participants reported feelings of empowerment related to their body image postcancer treatment.
Adolescent ~ “I got diagnosed in January and so throughout that year, it was getting warmer and I just didn’t want to wear my hats anymore, so I stopped caring.”
5.6 |. Positive social interactions can mitigate body image-related distress
Positive interactions and social support were reported as a protective factor for body image-related distress. Likewise, young adults reported that other peoples’ reactions to their bodies shape participants’ body images. As with adolescents, positive interactions and social support were protective against body image-related distress. Some young adults expressed a desire for additional social support, specifically from fellow cancer patients/survivors and providers.
Adolescent ~ “[My boyfriend] doesn’t make me feel like anything is wrong with me. He just boosts my head, calls me pretty all the time.”
6 |. UNIQUE THEMES EMERGING FROM PROVIDERS
6.1 |. Interpersonal relationships are affected by body image
Providers recognized the adverse impact that patient body image can have on AYAs relationship with others; body changes can make patients uncomfortable in public because they are concerned with how others are viewing them. This can result in social isolation and the potential reduction in quality of life as a result. Body image and side effects from cancer treatment affect existing or potential interpersonal relationships with family, friends, and intimate partners.
… especially if they’re cervical or ovarian or colorectal cancer patient, the treatment itself over time is very invasive, and so their relationship with their own body and their own sexuality changes and therefore can impact the relationship with their partner… I think body image is tied in integrally to how they relate to themselves and how they relate to their partners and to their sense of identity. For a lot of people, it can change relationships. End relationships.
6.2 |. Body image concerns may affect AYAs choice of/adherence to treatment plans
Providers shared that some patients do not adhere to treatment plans, or select alternative treatment plans or limb prosthesis, if the treatment/prosthesis negatively affects their appearance.
And then our kids who get a lot of steroids, it’s the chipmunk cheeks and the abdominal belly fat that the kids… that some of the teenagers really struggle with. And so, you have to discuss it, and you have to discuss that it’ll get better, and that they shouldn’t stop taking their chemotherapy because of this.
6.3 |. Body image not systematically addressed by providers
Providers shared many reasons as to why body image is not systematically addressed with patients. For example, they reported that there is no clinical standard as to how/when to discuss body image, and high variability among patients’ need to discuss it.
We deal with the first few issues. Once you solve for those things, you move to the next few issues. So, we’re constantly assessing what the top issues are and then addressing those and then moving to the next set of issues and addressing those, and so it really is personal. For some patients, body image might come up on day one. For some patients, it might not come up until the eighth visit.
7 |. DISCUSSION
AYAs are a heterogeneous group, but the consistency of themes that emerged across groups in the present study is striking. Themes that were present across all AYA groups include psychological coping, physical changes/loss of function, concerns about others’ perceptions, shifts in identity/sense of self, and precancer body image shapes postdiagnosis/treatment. Overall, these themes are congruent with the larger impact of body image on patients with cancer.18 The only theme that appeared to be greater in AYAs is the “concerns about how others’ view them,” which is consistent with literature examining the importance of external feedback on body image in younger age groups.19 The resulting conceptual model (Figure 1) is consistent with previous work in body image. For example, body image perceptions, cognitions, behaviors, and emotions, which are highlighted in Fingeret’s model of patient satisfaction, body image, and quality of life for women undergoing breast reconstruction,20 are represented in the current data. Similarly, the emerging conceptual framework shares similarities with Dropkin’s model of body image reintegration with head and neck surgery, such as a focus on cognitive, affective, and behavioral response to body image disturbance over time.21 However, the current study extends the conceptualization of body image by delineating a developmental component, highlighting the influence of social and clinical interactions in AYAs.
Only three of the emerging themes were not shared by two or more patient groups. The first theme (changes to appearance and function shift over time) was identified from only the emerging adult interviews, which were conducted further from their initial diagnoses than the other two groups. Emerging adults also reported a desire for additional support groups or therapy.22 Consistent with prior work examining unmet needs in AYA cancer survivors,23 they reported feeling that their overall wellbeing was neglected, and wishing that more mental health support had been offered to them throughout and following treatment. Prior literature suggests that social support tends to be provided close to cancer diagnosis, and gradually decreases in subsequent weeks and months.24 It’s possible that emerging adults in this study were experiencing distressing body changes, but their social support had limited capacity or willingness to provide support. Emerging adults are the most “in transition” of the three subgroups of AYAs. At a time when they are expected to be separating from their families, starting/finishing college, and launching careers, cancer significantly disrupts this progression.25
7.1 |. Clinical implications
Two unique provider themes are worth highlighting. The first is that body image is not systematically addressed by AYA providers26 or included in clinical standards despite relevance to AYA’s choice of and/or adherence to treatment plans. Second, AYAs who are experiencing significant body image-related distress should be referred appropriately to mental health providers. The present results suggested areas of further exploration. For example, two participants from different age groups specifically mention how they feel differently in the clinic compared to the outside world. They describe feeling comfortable with their appearances in the hospital since their peers shared some of the same physical side effects. One participant reflected that he may have responded differently to mental health screening questions if they were posed to him in a social setting (i.e., at a bar) instead of in the cancer clinic where he was surrounded by others with similar appearances. As there are both state and trait aspects of body image, it could be argued that setting specific responses are both equally valid and worth further exploration.
7.2 |. Study limitations
The heterogeneity of the patient sample, while purposefully recruited to capture the range of AYAs with respect to disease type and age subgroups, made comparing patient experiences difficult. In general, adolescent patients were interviewed closer to their initial diagnoses, and emerging adults were interviewed further from their initial diagnoses, which made it unclear if differences in response were due to age or proximity to diagnosis. Therefore, differences seen across age groups may be due in part to differences in time since diagnosis or normative developmental differences. The need for social/emotional peer support may also change for survivors over time. In addition, the young adult sample was nearly all female while the emerging adult sample was mostly male, but this is somewhat representative of the prevalence across sex and age. Since body image can vary based on biological sex and gender identity in this population,27,28 results may not represent the full spectrum of body image experiences (e.g., as experienced by non-cisgender patients). Finally, while the sample was racially and ethnically diverse, the sample size precluded examining cultural differences in the experience of body image.
8 |. CONCLUSION
Adolescent and young adult cancer survivors report a range of responses to treatment induced body image changes. The resulting conceptual framework of AYA body image offers an important contribution to the literature as psychosocial needs and HRQOL concerns of this patient group have been neglected. These data have important implications for treatment, future conceptualization, and measurement development in this vulnerable population.
Supplementary Material
ACKNOWLEDGMENTS
The authors would like to thank the adolescents and young adult survivors and healthcare providers who generously devoted their time to teach us about body image considerations. And to acknowledge the research team from the Qualitative and Patient Reported Outcomes Shared Resource of the Wake Forest Baptist Comprehensive Cancer Center for their dedicated work on this project. Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number R01CA218398. This research was also supported in part by the Qualitative and Patient-Reported Outcomes Shared Resource of the Wake Forest Baptist Comprehensive Cancer Center’s NCI Cancer Center Support Grant P30CA012197 and the Wake Forest Clinical and Translational Science Institute’s NCATS Grant UL1TR001420.” The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
CONFLICT OF INTEREST
The authors have no conflicts of interest, financial or otherwise, related to the content of this manuscript.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
SUPPORTING INFORMATION
Additional supporting information may be found online in the Supporting Information section at the end of this article.
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