Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

PURPOSE: For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs. METHODS: Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs. RESULTS: Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority. CONCLUSION: Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

Financial burden for caregivers of adolescents and young adults with cancer.

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.

Coping with breast cancer together: Challenging topics for mothers and their adolescent-young adult (AYA) daughters.

Background. The mother-daughter relationship can be central to women who are coping with breast cancer and provide a key source of support. However, the adolescent and young adult (AYA) daughters of diagnosed mothers have been known to exhibit notable distress during this time, withdrawing and avoiding communication, further challenging their ability to cope together. Objective. We sought to identify challenging topics that contribute to this avoidant mother-daughter communication pattern, as a first step in helping mothers and AYA daughters facilitate health-promoting communication. Methods. We examined thematically analyzed transcripts of one-on-one, in-depth, semi-structured interviews with 27 women (12 mother-daughter dyads). Results. We to identified 3 broad topics that were challenging to discuss: daughters' future breast cancer risk; emotionally related concerns; and clinical and physical aspects of disease. Thematic properties illustrate the challenging nature of each topic that informed their ability to communally cope together. Implications. Findings provide an initial roadmap for developing communication skills interventions that help mothers and AYA daughters navigate challenging conversations and facilitate communal coping.

Helping Diagnosed Mothers and Their Adolescent-Young Adult Daughters Navigate Challenging Breast Cancer Conversations.

Background: Mothers diagnosed with breast cancer describe daughters as a critical source of support. Talking about breast cancer is especially distressing and challenging for mothers and their adolescent-young adult (AYA) daughters. Objective: The over-arching study aim was to generate findings to integrate into an intervention to enhance diagnosed mothers' and AYA daughters' communication skills by identifying approaches they find helpful when talking about cancer. Methods: We recruited 27 women (12 dyads). Diagnosed mothers and their AYA daughters (aged 18-29) participated in individual, in-depth, semi-structured interviews. Transcripts were thematically analyzed. Mothers'/daughters' perspectives were compared/ triangulated. Results: Both mothers and daughters identified 3 approaches that helped them navigate cancer communication: (mothers) initiate conversations, keep communication positive, and limit cancer conversations. Only mothers reported it was helpful to downplay the seriousness of cancer. Only daughters identified it was important for them to reframe their perspective of mothers' disclosures. Conclusions: Findings provide clinicians like nurses and families with a "psychosocial map" of communication approaches and associated strategies mothers and AYA daughters can use to talk about breast cancer in ways that promote daughters' comfort and/or alleviate distress. Implications for Practice: Findings capture communication skills to focus on when tailoring developmentally focused interventions targeting diagnosed mothers and AYA daughters. Nurses can translate findings into practice to help patients talk to AYA daughters about cancer, thereby promoting a family-centered cancer care approach. What Is Foundational: AYA daughters are especially distressed talking about cancer with their diagnosed mothers. They can both use communication strategies to enhance their communal coping.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

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

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.

Physicians' Religious Topic Avoidance during Clinical Interactions.

Religious and spiritual (R/S) conversations at the end-of-life function to help patients and their families find comfort in difficult circumstances. Physicians who feel uncertain about how to discuss topics related to religious beliefs may seek to avoid R/S conversations with their patients. This study utilized a two-group objective structured clinical examination with a standardized patient to explore differences in physicians' use of R/S topic avoidance tactics during a clinical interaction. Results indicated that physicians used more topic avoidance tactics in response to patients' R/S inquiries than patients' R/S disclosures; however, the use of topic avoidance tactics did not eliminate the need to engage in patient-initiated R/S interactions.

Impact of provider-patient communication on cancer screening adherence: A systematic review.

Cancer screening is critical for early detection and a lack of screening is associated with late-stage diagnosis and lower survival rates. The goal of this review was to analyze studies that focused on the role of provider-patient communication in screening behavior for cervical, breast, and colorectal cancer. A comprehensive search was conducted in four online databases between 1992 and 2016. Studies were included when the provider being studied was a primary care provider and the communication was face-to-face. The search resulted in 3252 records for review and 35 articles were included in the review. Studies were divided into three categories: studies comparing recommendation status to screening compliance; studies examining the relationship between communication quality and screening behavior; and intervention studies that used provider communication to improve screening behavior. There is overwhelming evidence that provider recommendation significantly improves screening rates. Studies examining quality of communication are heterogeneous in method, operationalization and results, but suggest giving information and shared decision making had a significant relationship with screening behavior. Intervention studies were similarly heterogeneous and showed positive results of communication interventions on screening behavior. Overall, results suggest that provider recommendation is necessary but not sufficient for optimal adherence to cancer screening guidelines. Quality studies suggest that provider-patient communication is more nuanced than just a simple recommendation. Discussions surrounding the recommendation may have an important bearing on a person's decision to get screened. Research needs to move beyond studies examining recommendations and adherence and focus more on the relationship between communication quality and screening adherence.

Differences in physician communication when patients ask versus tell about religion/spirituality: a pilot study.

BACKGROUND AND OBJECTIVES: Research suggests that physicians should pursue spiritual issues and that patients desire to discuss religion/spirituality (R/S) in medical encounters. This study explored the differences in physician communication in response to patient inquiry or disclosure of R/S and hypothesizes that physician communication will differ when patients disclose R/S as contrasted to inquire about R/S. METHODS: Family physicians and family medicine resident physicians were recruited from a family medicine department at a community hospital (n=27). An objective structured clinical examination, with a standardized patient encounter, was used to expose the participants to a conversation regarding R/S. Participants were assigned, by alternating clustered assignment, to two conditions: patient disclosure of R/S or patient inquiry about physician R/S. The primary outcome measure was physician response, specifically physician-control, partnership-building, and supportive-talk messages. RESULTS: When the patient asks questions about R/S, physicians communicate more control messages and less supportive talk messages than when the patient discloses information about R/S. CONCLUSIONS: Training physicians to anticipate and respond to patient disclosure and inquiry will increase the likelihood they can enact patient-centered strategies. These methods should focus on teaching residents how to be sensitive to the R/S context of their patients and to recognize their own intuitive reactions to patient communication in that context.