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Background: Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population., Objective: We aimed to prospectively describe the content and trajectory of benefit- and burden-finding among AYAs to develop potential targets for future intervention., Patients and Methods: One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-to-burden by patient and by time point., Setting/subjects: Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3) completed 44 interviews with >100 hours of transcript-data., Results: Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose., Conclusions: AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes.

Background: Although cystic fibrosis (CF) is a progressive, life-limiting, genetic disease, recent advances have extended survival, allowing persons with CF the time and physical and mental health to form romantic relationships. Previous studies have shown the importance of dyadic coping to positive psychosocial functioning and relationship satisfaction for people with serious chronic illness and their romantic partners, but little work has been done with persons with CF and their partners. The present study examines dyadic coping processes in persons with CF and their romantic partners. Methods: 16 adults with moderate to severe CF (Mage = 42.3, 43.8% identified as cisgender male, 56.2% identified as cisgender female) and their romantic partners (Mage = 43.8, 56.3% identified as cisgender male, 43.7% identified as cisgender female) participated in individual semi-structured interviews focused on topics related to quality of life, communication, and palliative care. We conducted a directed content analysis utilizing Berg and Upchurch's (2007) developmental-contextual theoretical model to examine dyadic coping processes in persons with CF and their romantic partners. Results: Consistent with the developmental-contextual model of dyadic coping, couples described adapting to health and functional declines that occurred over time. Dyads were aligned in their appraisals of illness representation, illness ownership, and perspectives of illness as a shared stressor; they used shared coping mechanisms that included supportive and collaborative actions rather than uninvolved or controlling strategies. Conclusions: We recommend family-based approaches to medical decision-making and goals of care conversations with persons with CF and their partners, aligning those approaches with supportive and collaborative coping configurations. This may improve psychosocial outcomes for patients and their partners. [ABSTRACT FROM AUTHOR]

Social determinants of health (SDOH) affect quality of life. We investigated SDOH impacts on self-perceived resilience among people with adult congenital heart disease (ACHD). Secondary analysis of data from two complementary studies: a survey study conducted May 2021-June 2022 and a qualitative study conducted June 2020-August 2021. Resilience was assessed through CD-RISC10 score (range 0-40, higher scores reflect greater self-perceived resilience) and interview responses. Sociodemographic and SDOH (education, employment, living situation, monetary stability, financial dependency, area deprivation index) data were collected by healthcare record review and self-report. We used linear regression with robust standard errors to analyze survey data and performed a thematic analysis of interview data. Survey participants (N = 127) mean age was 42 ± 14 years; 51% were female, 87% white. ACHD was moderate (75%) or complex (25%); 41% functional class C or D. Resilience (mean 30 ± 7) varied by monetary stability: compared to people with difficulty paying bills, resilience was 15.0 points higher (95% CI: 6.9-23.1, p < 0.001) for people reporting having enough money and 14.2 points higher (95% CI: 5.9-22.4, p = 0.001) for those reporting just enough money. Interview participants' (N = 25) mean age was 32 years (range 22-44); 52% were female, 72% white. ACHD was moderate (56%) or complex (44%); 76% functional class C or D. Participants discussed factors affecting resilience aligned with each of the major SDOH, prominently, economic stability and healthcare access and quality. Financial stability may be important for supporting self-perceived resilience in ACHD. This knowledge can inform the development of resilience interventions for this population. [ABSTRACT FROM AUTHOR]

Purpose: A diagnosis of cancer often derails an individual's goals. The purpose of this mixed-methods analysis was to describe the evolution of adolescent and young adult (AYA)-reported goals in the year after a diagnosis of new or advanced cancer. Methods: As part of the Promoting Resilience in Stress Management (PRISM) phase 2 randomized controlled trial, AYAs with cancer (ages 12–25 years) were asked at baseline, 6 months, and 12 months: "Please give an example of a goal you hope to accomplish over the next month/year." We used content analysis to categorize goals as follows: life milestones, physical health, mental/emotional health, cancer specific, and hobbies/interests. We summarized goal categories at each time point: for the entire cohort, by baseline diagnosis status (new vs. advanced cancer), treatment status (on-therapy vs. off-therapy), and baseline health-related quality of life (high vs. low). Results: Eighty-six participants completed the study and were included in the analysis (control: n = 41, PRISM: n = 45); 69 reported their goals at 6 months, and 54 at 12 months. Participants submitted a total of 169 goals at baseline, 148 at 6 months, and 126 at 12 months. At baseline, cancer-specific goals were most common for the short-term (35%), whereas milestone goals were most common for the long-term (46%). At 6 months, milestone goals were most common in both short- (38%) and long-term (51%) categories. A similar pattern was seen at 12 months. Conclusion: AYAs' goals change over the first year of their cancer experience, with a shift in short-term goals from cancer-specific goals at baseline to milestone goals at later time points. ClinicalTrials.gov (NCT02340884). [ABSTRACT FROM AUTHOR]

Context: Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs.Objectives: To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities.Methods: In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions.Results: Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives.Conclusion: AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative. [ABSTRACT FROM AUTHOR]