Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.

Development of a Mindfulness-Based Intervention for Narcolepsy: A Feasibility Study.

STUDY OBJECTIVES: Mindfulness-based interventions (MBI) have been shown to improve psychosocial functioning in medical populations but have not been studied in narcolepsy. This study examined the feasibility and acceptability of an MBI that was adapted for narcolepsy, including three variations in program length. METHODS: Adults with narcolepsy (N = 60) were randomized to MBI groups of varying durations: brief (4 weeks), standard (8 weeks), or extended (12 weeks). Participants completed assessments at baseline, 4 weeks, 8 weeks, and 12 weeks. To assess feasibility and acceptability, primary outcomes included attendance, meditation practice, and data completeness. Additionally, participants completed measures of mindfulness, self-compassion, mood, sleep, psychosocial functioning, and cognition. An effect size of Cohen's d ≥ 0.5 was used as the pre-specified benchmark for a minimal clinically important difference (MCID). RESULTS: The attendance, meditation, and data completeness benchmarks were met by 71.7%, 61.7%, and 78.3% of participants, respectively. Higher proportions of the brief and extended groups met these benchmarks compared to the standard group. All groups met the MCID for mindfulness, self-compassion, self-efficacy for managing emotions, positive psychosocial impact, global mental health, and fatigue. Standard and extended groups met the MCID for anxiety and depression, and extended group met the MCID for additional measures including social and cognitive functioning, daytime sleepiness, hypersomnia symptoms, and hypersomnia-related functioning. CONCLUSION: Results suggest that the remote delivery and data collection methods are feasible to employ in future clinical trials, and it appears that the extended MBI provides the most favorable clinical impact while maintaining attendance and engagement in meditation practice.

Protocol of a randomised controlled multicentre trial investigating the effectiveness and safety of a wilderness programme on the mental and physical well-being of adolescents and young adults affected by cancer: the WAYA-2 study.

INTRODUCTION: Adolescents and young adults (AYAs) affected by cancer are an understudied group. Effective interventions are needed to support coping with the late effects of cancer, its treatment and to promote quality of life. Nature-based interventions may be promising in support of the self-management and health of AYAs affected by cancer. However, randomised controlled studies (RCTs) on the effectiveness of such interventions are lacking. We performed a first pilot RCT (n=42) that showed that it is feasible and safe to conduct such a study. Here, we propose a full-scale RCT to investigate the effectiveness and safety of a wilderness programme on the mental and physical health of AYAs affected by cancer. METHODS AND ANALYSIS: Participants are 150 AYAs affected by cancer, aged 16-39 years, who will be randomised to a wilderness (n=75) or a hotel stay (n=75). The wilderness programme is an 8-day intervention including a 6-day wilderness expedition. This is followed 3 months later by a 4-day intervention including a 2-day basecamp. Activities include hiking, backpacking, kayaking, rock climbing, mindfulness and bush-crafting. The comparison group is an 8-day hotel stay followed by a 4-day hotel stay (interventions include two travel days) at the same hotel after 3 months. Primary outcomes are psychological well-being and nature connectedness up to 1 year after the study start. Secondary outcomes are quality of life, physical activity and safety parameters. ETHICS AND DISSEMINATION: The Swedish Ethical Review Authority approved the study protocol on 27 September 2023 (reference: 2023-05247-01). The recruitment started on 19 February 2024 and the first part is planned to end on 31 December 2027. Study results will be disseminated by means of scientific publications, presentations at conferences, popular articles, interviews, chronicles and books. News items will be spread via social media, websites and newsletters. TRIAL REGISTRATION NUMBER: ISRCTN93856392.

Need for Behavioral Interventions for Young Adults Living with Advanced Cancer in the U.S.

The population of young adults (YAs) aged 18-39 living with advanced cancer is growing and faces a compounded set of challenges at the intersection of age and disease. Despite these substantial challenges, behavioral interventions tailored to YAs living with advanced cancer remain scarce. This commentary aims to (1) discuss the unmet psychological, social, and behavioral needs of YAs living with advanced cancer; (2) highlight the paucity of behavioral interventions tailored to this growing population; (3) offer recommendations for the development of behavioral interventions targeting the unique needs of YAs living with advanced cancer; and (4) describe potential far-reaching public health benefits of these targeted behavioral interventions.

Implementation Readiness and Initial Effects of a Brief Mindfulness Audio Intervention Compared With a Brief Music Control During Daily Radiation Therapy for Prostate Cancer: A Randomized Pilot Study.

Background: The most common and debilitating side effects of radiation therapy (RT) for prostate cancer (PC) are fatigue, sleep disturbance, anxiety, and depression. Previous research has reported palliative benefits from certain self-management approaches, such as mindfulness meditation. Objective: To develop, pre-test, and evaluate the feasibility, acceptability and initial benefit of brief, audio-based mindfulness delivered during daily RT for PC compared to a relaxing music control. Methods: Following intervention development, participants were randomized to either brief guided mindfulness audio recordings or a relaxing music control during daily RT. A pre-testing phase was first conducted to determine optimal program start time, length, and content most associated with retention. A final program (n = 26) was delivered daily, starting on day one of week 2 of RT and lasting 4 consecutive weeks. Feasibility was defined as ≥70% on enrollment rate, retention, and audio program adherence. Acceptability was measured with a 12-item post-study survey. A secondary focus compared between group changes on patient reported outcomes of fatigue, anxiety, depression, sleep disturbance, and related outcomes at baseline and follow up assessments. Descriptive statistics and general linear models were used. Results: Overall, 76% (n = 38) of approached men enrolled. Pre-testing retention rates were <70% while the final program's retention rate was 89%. The majority of acceptability criteria were met in both conditions, with relatively higher ratings in the mindfulness arm. Compared to music controls, mindfulness participants demonstrated significantly less uncertainty intolerance at 4-weeks (P = .046, d = .95); and significantly lower fatigue scores (P = .049, d = 1.3) and lower sleep disturbance scores (P = .035, d = 1.1) at the 3 months follow up. Conclusion: The final intervention met feasibility and acceptability criteria. Pre-testing refinements played a key role for optimal program delivery and retention. Audio-based mindfulness delivered during RT for PC hold potential to help decrease RT-related physical and emotional side effects.

Development and Implementation of a Culturally Informed Spanish Language Yoga Program for Latiné Women With Overweight or Obesity Diagnosed With Cancer: A Single Arm Pilot Study.

Background: Given limited yoga research in health disparities populations, we developed and evaluated a 12-week Spanish language yoga program for Latiné women with overweight or obesity affected by cancer. The program aimed to empower participants through culturally tailored yoga practice and opportunities for social connection and support. Methods: Partnering with a community-based organization, the program was co-created by bilingual (English and Spanish-speaking) yoga instructors, Latiné cancer survivor support professionals, and integrative medicine researchers. The single arm intervention consisted of 12 separate, 60-minute Hatha yoga classes, including physical postures, breathing exercises, culturally relevant poetry, and post-practice socialization opportunities. Measures were administered at baseline, 12-week, and 24-week. Results: Thirty-five eligible participants enrolled in the program, demonstrating high feasibility and relevance as well as high levels of engagement in home practice. Some participants faced barriers to regular home practice, including family responsibilities and concerns about proper pose execution. Preliminary outcome analyses indicated improvements in sleep disturbance, pain interference, depression, and blood pressure post-intervention, with sustained improvements in depression, anxiety, and blood pressure at 24-week. No significant changes were observed in fatigue, physical function, positive affect, satisfaction with social roles and activities, and weight. Structured post-practice social snack time with yoga instructors (compared with unstructured time with peers) was associated with self-reported improvements in satisfaction with social roles and activities and weight loss. Conclusion: This yoga program successfully engaged female Latiné cancer survivors with overweight and obesity and serves as a foundational step in empowering this population to improve their health and well-being through culturally tailored yoga practice. Future research should utilize controlled study designs and engage participants from different geographical regions to study the efficacy and sustainability of findings.

Cultivating Reciprocity Between People and Planet: Habit-Stacking Planetary Health Prescriptions Into Existing Nature RX Encounters During Integrative Health Visits.

The reported benefits of nature contact on human health and well-being have prompted the rise of nature prescriptions with health professionals recommending nature exposure. Due to the success of nature prescriptions and calls for greater reciprocity between people and the planet, this essay proposes to leverage health behavior promotion strategies to integrate planetary health prescriptions (Earth RX) into existing nature prescription frameworks with a vision to counsel patients on both the health and well-being benefits of nature contact as well as earth-sustaining behaviors, all of which fosters a compassionate interdependence between personal and planetary well-being. The essay emphasizes the importance of co-designed stakeholder collaboration for program success, addressing factors such as trust, perceived benefits, and accessibility. Finally, this essay concludes that integrating Earth RX in nature prescription programs strategically aligns with the principles of integrative health, acknowledging the reciprocal relationship between human health and well-being and planetary well-being.

Evaluating the Usability of an mHealth App for Empowering Cancer Survivors With Disabilities: Heuristic Evaluation and Usability Testing.

BACKGROUND: More than 18 million cancer survivors are living in the United States. The effects of cancer and its treatments can have cognitive, psychological, physical, and social consequences that many survivors find incredibly disabling. Posttreatment support is often unavailable or underused, especially for survivors living with disabilities. This leaves them to deal with new obstacles and struggles on their own, oftentimes feeling lost during this transition. Mobile health (mHealth) interventions have been shown to effectively aid cancer survivors in dealing with many of the aftereffects of cancer and its treatments; these interventions hold immense potential for survivors living with disabilities. We developed a prototype for WeCanManage, an mHealth-delivered self-management intervention to empower cancer survivors living with disabilities through problem-solving, mindfulness, and self-advocacy training. OBJECTIVE: Our study conducted a heuristic evaluation of the WeCanManage high-fidelity prototype and assessed its usability among cancer survivors with known disabilities. METHODS: We evaluated the prototype using Nielsen's 10 principles of heuristic evaluation with 22 human-computer interaction university students. On the basis of the heuristic evaluation findings, we modified the prototype and conducted usability testing on 10 cancer survivors with a variety of known disabilities, examining effectiveness, efficiency, usability, and satisfaction, including a completion of the modified System Usability Scale (SUS). RESULTS: The findings from the heuristic evaluation were mostly favorable, highlighting the need for a help guide, addressing accessibility concerns, and enhancing the navigation experience. After usability testing, the average SUS score was 81, indicating a good-excellent design. The participants in the usability testing sample expressed positive reactions toward the app's design, educational content and videos, and the available means of connecting with others. They identified areas for improvement, such as improving accessibility, simplifying navigation within the community forums, and providing a more convenient method to access the help guide. CONCLUSIONS: Overall, usability testing showed positive results for the design of WeCanManage. The course content and features helped participants feel heard, understood, and less alone.

Heteronormative biases and distinctive experiences with prostate cancer among men who have sex with men: a qualitative focus group study.

BACKGROUND: Men who have sex with men (MSM) face many challenges and biases in healthcare. Within urology there is a need to better understand how prostate cancer impacts MSM given the unique ways in which side effects that accompany treatment may affect this population. The goal of this study is to explore the experience of MSM with prostate cancer to advance the existing literature in this area and inform implementation and delivery of clinical practice and policy guidelines. METHODS: Four focus groups were conducted with a semi-structured interview guide. Using a phenomenological qualitative approach consistent with grounded theory [1] and naturalistic inquiry principles we sought to better understand the direct experiences of MSM with prostate cancer. Audio transcriptions were thematically analyzed to identify themes that impact MSM throughout their prostate cancer journey. An iterative, team-wide classification process was used to identify, organize, and group common codes into higher-order categories and themes. RESULTS: Patient's choice of provider and their interactions with the healthcare system were strongly impacted by their sexual identities. Participants commented on navigating the heteronormative healthcare environment and the impact of assumptions they encountered. MSM experienced the sexual side effects of prostate cancer treatment in unique ways. Issues with erectile dysfunction and ejaculatory dysfunction had significant impacts on patient's sexual experience, with some describing being forced to explore new modes of sexual expression. Anejaculation was a theme that was distressing for many participants. The emotional impact of a prostate cancer diagnosis was significant in the men interviewed. Common themes included loss of identity and fear for future relationships. CONCLUSIONS: MSM have unique concerns after prostate cancer treatment that differ from men who don't identify as MSM. It is critical that providers familiarize themselves with the concerns of this patient population regarding prostate cancer treatment. An important step toward reducing heteronormative bias in prostate cancer care is to better understand the goals, identity, and sexual practices of MSM and to provide informed anticipatory guidance.

Does the Canadian Occupational Performance Measure (COPM) Capture the Complex Experiences of Cancer Survivors? A Mixed Methods Approach.

Occupational therapy practitioners are uniquely positioned to address the needs of cancer survivors. This study aimed to understand the complex needs of survivors using The Canadian Occupational Performance Measure and in-depth interviewing. A convergent, mixed methods approach was utilized with a purposive sample of 30 cancer survivors. The results indicate that while the COPM can be a practical tool to address basic occupational performance problems, the in-depth interviews exposed these challenges are intricately connected to identity, relationships, and roles. Implications for occupational therapy practitioners include a critical approach to evaluation and interventions to capture the complex needs of survivors.

Patient values in breast cancer surgical decision-making - The WhySurg study.

BACKGROUND: The objective of this study was to describe patient values and personality traits associated with breast surgery choice for patients with breast cancer. METHODS: A survey based on qualitative patient interviews and the Big-Five personality trait profile was distributed to Love Research Army volunteers aged 18-70 years old who underwent breast cancer surgery from 2009 to 2020. Multivariable logistic regression analysis was used to determine independent patient values and personality traits for the choice of breast-conserving surgery (BCS), unilateral mastectomy (UM) and bilateral mastectomy (BM). RESULTS: 1497 participants completed the survey. Open-mindedness was associated with UM and sociability was associated with BM. A majority of patients prioritized cancer outcomes. Compared to BM patients, BCS and UM patients were significantly more likely to choose values associated with maintaining their self-image, optimizing surgical recovery, and following their doctor's recommendation. CONCLUSIONS: Other values besides cancer outcomes differentiate patient surgical choice for BCS or mastectomy.

Effects of mindful physical activity on perceived exercise exertion and other physiological and psychological responses: results from a within-subjects, counter-balanced study.

Background: Most adults are insufficiently active. Mindfulness training may increase moderate to vigorous physical activity (MVPA) adoption and adherence. However, physiological and psychological factors underlying these effects are not well understood. This study examined the effects of an acute bout of MVPA, mindfulness training, and combined MVPA and mindfulness training on physiological and psychological outcomes. Methods: Healthy adults (N = 29, Mage = 28.6) completed 20-min counterbalanced conditions: (a) mindfulness training (MIND); (b) moderate intensity walking (PA), and (c) moderate intensity walking while listening to MVPA-specific guided mindfulness training (PAMIND). Heart rate (HR), Rating of Perceived Exertion (RPE), Feeling Scale (FS) and Blood Pressure (BP) were measured at rest, at regular intervals during each condition, and post-condition. Mindfulness, state anxiety, and self-efficacy were assessed pre- and post-condition. Results: Average and peak HR, systolic BP (SBP), and RPE were significantly higher, and average and peak FS were significantly lower during the PA and PAMIND conditions compared to MIND (p < 0.001). Average RPE was significantly higher for PA compared to PAMIND (p < 0.001). Heart rate, feeling scale, body and mental events mindfulness, and self-efficacy for walking increased from pre to post (all p's < 0.001) for all conditions. Time by condition interactions were significant for change in heart rate, mental events mindfulness, and state anxiety from pre- to post-condition. Conclusion: The physiological response to MVPA and PAMIND were similar. However, RPE was rated lower in the PAMIND condition, which could have implications for MVPA adoption and maintenance. Future work should further explore RPE combining MVPA and mindfulness training.

Coping strategies and psychosocial resources among women living with metastatic breast cancer: A qualitative study.

Objective: Despite more women living with metastatic breast cancer (MBC), this population is underrepresented in cancer survivorship research. Few studies have assessed how women with MBC cope with their cancer experience. This qualitative study describes the coping strategies and psychosocial resources utilized by women living with MBC.Methods: Twenty-two women with MBC participated in four focus groups. Transcripts were analyzed using a general inductive approach. Codes derived from participants' responses were subsequently condensed into themes.Results: We identified 12 coping strategies and psychosocial resources and grouped them into five themes: Behavioral Coping Strategies (i.e. stress management, active coping and planning); Cognitive Coping Strategies and Psychological Resources (i.e. cognitive reappraisal, optimism, mindfulness, positive thinking, and religious coping); Existential Approach-Oriented Coping (i.e. acceptance, values-based living, and identity integration); Avoidance (i.e. avoidant coping); and Interpersonal Resources and Seeking Social Support (i.e. social support).Conclusions: Women living with MBC utilize several engagement and disengagement coping strategies, as well as intrapersonal and interpersonal resources. This study provides useful perspectives of women living with MBC that may inform the development of psychosocial interventions. Further research is needed to assess coping strategies and psychosocial resources across different subgroups of MBC patients and determine their impact on cancer outcomes.

Exploring Breast Surgeons' Attitudes on Universal Genetic Testing: A Qualitative Study.

BACKGROUND: The American Society of Breast Surgeons released a consensus statement that genetic testing should be made available to all patients with a personal history of breast cancer. However, it is not clear whether physicians feel comfortable with universal genetic testing (UGT) or if they have sufficient knowledge to interpret results and manage them appropriately. OBJECTIVE: The purpose of this study was to explore breast surgeons' attitudes toward UGT. METHODS: Breast surgeons were consented and scheduled for a semi-structured virtual interview. Transcripts were uploaded into qualitative analysis software where they were exhaustively and iteratively coded. Codes were then organized into higher-order categories and themes and data saturation were assessed. RESULTS: Thirty-one surgeons completed the qualitative interview. Most surgeons practiced in the academic or community setting and most practiced in the Midwest (71.0%). The majority (90.3%) reported having a structured genetics program. The majority (96.8%) referred their patients to genetics for counseling and most preferred ordering testing through a genetic services provider. Some surgeons had concerns about access to genetic services. A minority of surgeons order UGT for all newly diagnosed breast cancer patients. The majority of respondents thought that more training in genetics was needed for surgeons. Many surgeons expressed concern about the psychosocial effects of UGT on patients. CONCLUSIONS: Many surgeons expressed concerns about UGT, mainly related to discomfort with their training, access to genetic services, and the psychosocial impact on their patients. Future work is needed to determine how to improve surgeon's comfort level in implementing UGT.

Social isolation and social connectedness among young adult cancer survivors: A systematic review.

BACKGROUND: Social isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years. METHODS: Peer-reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors. RESULTS: In total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full-text review. Forty-four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well-being, whereas social connectedness was often, but not always, related to better psychological well-being. CONCLUSIONS: This growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.

Characterizing unique supportive care needs among women living with metastatic breast cancer: A qualitative study.

Background: Women with metastatic breast cancer face unique challenges as they cope with life-limiting prognoses and arduous treatments. However, the vast majority of research has focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer and little is known about supportive care needs among women living with metastatic cancer. As part of a larger project that sought to inform the development of a psychosocial intervention, the aim of this study was to characterize supportive care needs among women with metastatic breast cancer and elucidate challenges unique to living with a life-limiting prognosis. Methods: Four, two-hour focus groups with 22 women were audio-recorded, transcribed verbatim, and analyzed in Dedoose using a general inductive approach to code categories and extract themes. Results: A total of 16 codes emerged from 201 participant comments regarding supportive care needs. Codes were collapsed into four supportive care need domains: 1. psychosocial, 2. physical and functional, 3. health system and information, and 4. sexuality and fertility needs. The most prevalent needs were breast cancer-related symptom burden (17.4%), lack of social support (14.9%), uncertainty (10.0%), stress management (9.0%), patient-centered care (7.5%), and sexual functioning (7.5%). More than half of needs (56.2%) were in the psychosocial domain and more than two-thirds of needs (76.8%) were in the psychosocial and physical and functional domains. Supportive care needs unique to living with metastatic breast cancer included the cumulative effects of continuously undergoing cancer treatment on symptom burden, worry from scan-to-scan regarding response to cancer treatments, diagnosis-related stigma and social isolation, end-of-life concerns, and misconceptions regarding metastatic breast cancer. Conclusions: Findings suggest that women with metastatic breast cancer have unique supportive care needs compared to women with early-stage breast cancer that are specific to living with a life-limiting prognosis and are not typically captured in existing self-report measures of supportive care needs. Results also highlight the importance of addressing psychosocial concerns and breast cancer-related symptoms. Women with metastatic breast cancer may benefit from early access to evidence-based interventions and resources that specifically address their supportive care needs and optimize quality of life and wellbeing.

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.

Identifying Health-Related Quality of Life Domains After Upper Extremity Transplantation.

OBJECTIVE: To identify the most important health-related quality of life (HRQOL) domains and patient-reported outcomes after upper extremity transplantation (UET) in individuals with upper extremity amputation. DESIGN: Verbatim audio-recordings of individual interviews and focus groups were analyzed using qualitative, grounded theory-based methods to identify important domains of HRQOL and provide guidance for outcomes measurement after UET. SETTING: Individual interviews were conducted by phone. Focus groups were conducted at 5 upper extremity vascularized composite allotransplantation (VCA) centers in the US and at an international conference of VCA experts. PARTICIPANTS: Individual phone interviews were conducted with 5 individuals with lived experience of UET. Thirteen focus groups were conducted with a total of 59 clinical professionals involved in UET. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Twenty-eight key HRQOL domains were identified, including physical functioning and medical complications, positive and negative emotional functioning, and social participation, relations, and independence. We identified key constructs for use in evaluation of the potentially substantial physical, medical, social, and emotional effects of UET. CONCLUSIONS: This study provides an overview of the most important issues affecting HRQOL after UET, including several topics that are unique to individuals with UET. This information will be used to establish systematic, comprehensive, and longitudinal measurement of post-UET HRQOL outcomes.

Parental socialization of mental health in Chinese American families: What parents say and do, and how youth make meaning.

Parental mental health socialization is a process by which parents shape how youth develop and maintain beliefs, attitudes, and behaviors regarding mental health and help-seeking behaviors. Although culture shapes parental mental health socialization, few studies have examined specific parental socialization practices regarding mental health and help-seeking, especially as a culturally anchored process. Using a qualitative approach, this study explores youth-reported parental socialization of mental health within Chinese American families by examining focus group data from 69 Chinese American high school and college students. Findings revealed that youth received parental messages that conveyed culturally anchored conceptualizations of mental health that included stigmatized views of mental illness and perceptions of mental distress as not a legitimate problem. Parents responded to youth distress in culturally consonant ways: by encouraging culturally specific coping methods, dismissing or minimizing distress, or responding with silence. Youth engaged in the active interpretation of parental messages through cultural brokering, bridging the gap between their parents' messages and mainstream notions of mental health and help-seeking. Overall, our findings point to the significant role of culture in parental mental health socialization in Chinese American families and the need to integrate culturally specific understandings of mental health into future interventions for Asian American youth.