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As a result of modern treatments, the life of women who test positive for BRCA mutations may be plotted along the arc of preventive medicine rather than the slope of diagnostics. Despite evidence supporting the benefits of risk reduction, protocols for early detection and prevention among women from families affected by hereditary breast and ovarian cancer (HBOC) are not yet proven, and clinical trials have not been undertaken for patients aged 18 to 25. The absence of psychosocial data may leave genetic counselors without uniform guidance on how to manage the care of these patients. This project sought to investigate perspectives on counseling 18-25 year-old patients from families with hereditary cancer syndromes, with specific emphasis on HBOC, given their unique developmental, familial, and medical challenges. Certified genetic counselors were recruited through the NSGC's Cancer Genetics Special Interest Group listserv. Researchers constructed an online survey which included 41 items and elicited information about: counselor demographics, training, and practice settings; approaches to cancer risk assessment; and common challenges in work with 18- to 25-year-old patients. The survey was also informed by previous work by researchers with 18 to 25-year-olds with BRCA gene mutations. Eighty-six surveys were completed. Researchers used a combination of grounded theory and content analysis for open-ended responses, supported and triangulated with statistical analysis to maximize the interpretation of data. Genetic counselors who responded to this survey experience 18-25 year old patients presenting for cancer risk assessment differently than older patients, and some reported adapting their counseling style to address these differences. Respondents differed in the extent to which they felt well-versed in the developmental needs of patients in this age group. Respondents aged 39 and under reported feeling familiar with this stage in life, having more recently completed it; respondents aged 40 and over reported they were less familiar with, and more interested in learning about, this age group. A primary challenge in cancer risk assessment of these patients, reported primarily by counselors aged 39 and under, is navigating family dynamics in counseling sessions and addressing the developmentally labile young adult. With respect to BRCA-related cancer risk, where penetrance is incomplete, onset in early adulthood is rare. Evidence-based treatment/prevention options exist, but providers may not have clarity regarding how or when to provide directive counsel. A rich understanding of the themes inherent in how people grow and change over time might enhance the counselor's capacity to assess patients and their family members. The integration of a developmental approach to genetic counseling has the potential to reduce the imperative for non-directive counseling. [ABSTRACT FROM AUTHOR]

Despite research on BRCA1/2 mutation carriers attitudes towards preimplantation genetic diagnosis (PGD), considerably less is known about individuals' experience with its use. Through case reports of BRCA1/2 mutation carriers' thoughts on, and use of, PGD, this paper highlights how the option of PGD is experienced and negotiated in the context of reproductive and life-course goals. Drawing on qualitative interviews with 38 BRCA1/2 mutation carriers, this article focuses on a subsample of 10 interviewees who sought consultation for, and/or attempted, PGD, with in-depth reports of 3 cases and summary decisions of the remaining 7. Three couples decided against PGD, and one was deciding at the time of the interview. Interviewees discuss key aspects of their experience prior to, and going through, PGD for BRCA1/2, including potential challenges of becoming pregnant through PGD and of heightened pressure to achieve their reproductive goals more quickly. Despite considerable focus on ethical issues in screening embryos for mutations associated with adult-onset cancer risk, less attention has been paid to the technical, logistical, and related psychosocial issues. Narrative case reports may help individuals develop appropriate expectations of PGD for BRCA prepare for possibly challenging decisions and outcomes, and ultimately determine whether it is compatible with their reproductive goals. [ABSTRACT FROM AUTHOR]

Purpose: Young women who have been identified as carrying a deleterious mutation in BRCA1 or BRCA2 face a unique set of challenges related to managing cancer risk during a demographically-dense stage of life. They may struggle with decision-making in the absence of clear age-specific guidelines for medical management and because they have not yet fully developed the capacity to make life-altering decisions confidently. This study sought a patient-centered perspective on the dilemmas faced by 18–24 year olds who completed BRCA1/2 gene mutation testing prior to their 25th birthdays. Patients and Method: This study integrated qualitative data from three independent investigations of BRCA1/2-positive women recruited through cancer risk clinics, hospital-based research centers, and online organizations. All 32 participants were women aged 21–25 who tested positive for a BRCA1/2 gene mutation between 2 and 60 months prior to data collection. Investigators used techniques of grounded theory and interpretive description to conduct both within and cross-study analysis. Results: Participants expressed needs for (1) greater clarity in recommendations for screening and prevention before age 25, especially with consideration of early and regular exposure to radiation associated with mammography or to hormones used in birth control, and (2) ongoing contact with providers to discuss risk management protocols as they become available. Conclusions: Health care needs during the young adult years evolve with the cognitive capacity to address abrupt and pressing change. Specific needs of women in this population include a desire to balance autonomous decision-making with supportive guidance, a need for clear, accurate and consistent medical recommendations. Optimally, these women are best cared for by a team of genetically-oriented providers as part of a sustained program of ongoing support, rather than seen in an episodic, crisis-driven fashion. A discussion of insurance issues and provider-patient cultural differences is presented. [ABSTRACT FROM AUTHOR]

A child's adjustment to the death of a parent is greatly influenced by the surviving parent's ability to attend to his or her own grief-related needs, to create and sustain a consistent and nurturing environment, and to encourage the child to express distressing or conflicting thoughts, feelings, and fantasies about the loss. Yet, the surviving parent's grief often compromises their ability to parent consistently and empathically. This article will illustrate how, by providing a holding environment for whole families, clinicians can help parents to facilitate children's grief reactions and, thus, mitigate long-term adverse mental health outcomes. Family Matters programs, designed and implemented in a community agency, use a holistic approach to family support and treatment in a milieu setting. Combining therapeutic work with surviving spouses and bereaved children supports children's grief while facilitating newly single parents as they adapt the structure of family life. When clinical work with families begins before the ill parent dies, the clinicians may build a relationship with the dying parent, prepare the child and surviving spouse for life after loss, and support continuity in family culture. We introduce a curriculum for simultaneously supporting bereaved children and parents, present a series of common challenges faced by surviving parents, and suggest avenues for intervention research. [ABSTRACT FROM AUTHOR]

Periodograms are widely employed for identifying periodicity in time series data, yet they often struggle to accurately quantify the statistical significance of detected periodic signals when the data complexity precludes reliable simulations. We develop a data-driven approach to address this challenge by introducing a null-signal template (NST). The NST is created by carefully randomizing the period of each cycle in the periodogram template, rendering it non-periodic. It has the same frequentist properties as a periodic signal template, and we show with simulations that the distribution of false positives is the same as with the original periodic template, regardless of the underlying data. Thus, performing a periodicity search with the NST acts as an effective simulation of the null (no-signal) hypothesis, without having to simulate the noise properties of the data. We apply the NST method to the supermassive black hole binaries (SMBHB) search in the Palomar Transient Factory (PTF), where Charisi et al. had previously proposed 33 high signal-to-noise candidates utilizing simulations to quantify their significance. Our approach reveals that these simulations do not capture the complexity of the real data. There are no statistically significant periodic signal detections above the non-periodic background. To improve the search sensitivity, we introduce a Gaussian quadrature based algorithm for the Bayes Factor with correlated noise as a test statistic. We show with simulations that this improves sensitivity to true signals by more than an order of magnitude. However, the Bayes Factor approach also results in no statistically significant detections in the PTF data. [ABSTRACT FROM AUTHOR]

Understanding and remembering the complex experiences of everyday life relies critically on prior schematic knowledge about how events in our world unfold over time. How does the brain construct event representations from a library of schematic scripts, and how does activating a specific script impact the way that events are segmented in time? We developed a novel set of 16 audio narratives, each of which combines one of four location-relevant event scripts (restaurant, airport, grocery store, and lecture hall) with one of four socially relevant event scripts (breakup, proposal, business deal, and meet cute), and presented them to participants in an fMRI study and a separate online study. Responses in the angular gyrus, parahippocampal gyrus, and subregions of the medial prefrontal cortex (mPFC) were driven by scripts related to both location and social information, showing that these regions can track schematic sequences from multiple domains. For some stories, participants were primed to attend to one of the two scripts by training them to listen for and remember specific script-relevant episodic details. Activating a location-related event script shifted the timing of subjective event boundaries to align with script-relevant changes in the narratives, and this behavioral shift was mirrored in the timing of neural responses, with mPFC event boundaries (identified using a hidden Markov model) aligning to location-relevant rather than socially relevant boundaries when participants were location primed. Our findings demonstrate that neural event dynamics are actively modulated by top-down goals and provide new insight into how narrative event representations are constructed through the activation of temporally structured prior knowledge. [Display omitted] • Default mode regions represent schematic event scripts during narrative perception • Attending to an event script impacts behavioral event segmentation and memory • Neural dynamics in the mPFC reflect the event structure of an attended script De Soares et al. find that priming participants to attend to a schematic event script can change the way that a narrative stimulus is behaviorally and neurally segmented into perceptual events. [ABSTRACT FROM AUTHOR]

Individuals with inherited cancer syndromes, such as Li-Fraumeni syndrome (LFS), may be motivated to adopt health-protective behaviors, such as eating more fruits and vegetables and increasing physical activity. Examining these health behaviors among young people with high lifetime genetic cancer risk may provide important insights to guide future behavioral interventions that aim to improve health-related quality of life (HRQOL). We used a self-regulatory framework to investigate relationships among diet and physical activity behaviors and psychosocial constructs (e.g., illness perceptions, coping, HRQOL) in adolescents and young adults (AYAs; aged 15–39 years) with LFS. This longitudinal mixed-methods study included 57 AYAs aged 16–39 years at enrollment), 32 (56%) of whom had a history of one or more cancers. Participants completed one or two telephone interviews and/or an online survey. We thematically analyzed interview data and conducted regression analyses to evaluate relationships among variables. AYAs described adopting healthy diet and physical activity behaviors to assert some control over health and to protect HRQOL. More frequent use of active coping strategies was associated with greater reported daily fruit and vegetable intake. Greater reported physical activity was associated with better quality of psychological health. Healthy diet and physical activity behaviors may function as LFS coping strategies that confer mental health benefits. Clinicians might emphasize these potential benefits and support AYAs in adopting health behaviors that protect multiple domains of health. Future research could use these findings to develop behavioral interventions tailored to AYAs with high genetic cancer risk. [ABSTRACT FROM AUTHOR]

Objectives: This qualitative-descriptive study explored adolescent and young adult (AYA) perspectives, experiences, and challenges with openness and closedness in family communication about Li-Fraumeni syndrome (LFS).Methods: We conducted interviews with AYAs (aged 15-39 years) with LFS enrolled in the National Cancer Institute's LFS study (NCT01443468). An interprofessional clinician-researcher team analyzed transcribed data using the constant comparative method and interpretive description.Results: AYAs (N = 38; 26 females, 12 males, mean age=29 years) reported navigating openness and closedness about LFS in their families, which varied by LFS topic, relationship, disease trajectory, and developmental phase. AYAs described communication challenges, including broaching difficult topics (e.g., reproductive decision-making, end-of-life), balancing information-sharing with emotionally protecting family and self, and struggling with interactions that cause relational tensions.Conclusions: AYAs reported experiencing LFS family communication challenges that disrupted their psychosocial well-being. LFS-related stressors and life transitions complicated and were complicated by these challenging family interactions.Practice Implications: Clinicians may support AYAs with LFS by inquiring about family communication, responding empathically to communication concerns, providing resources to support difficult conversations, and engaging mental health providers as needed. Researchers could partner with AYAs to develop tailored communication skills training and social support tools. [ABSTRACT FROM AUTHOR]

Purpose: Adolescents and young adults (AYAs) with cancer predisposition syndromes often experience significant physical and psychosocial burdens. These burdens include cancer worry and potentially distressing bodily changes due to risk-reducing procedures (e.g., mastectomy) or cancer treatments. This qualitative-descriptive study explored how AYAs with Li-Fraumeni syndrome (LFS) relate and adjust to their bodies under the chronic threat of cancer. Methods: Participants were enrolled in the National Cancer Institute's LFS study. This analysis included 42 AYAs with LFS aged 15-39 years at enrollment who completed one or two telephone interviews that explored LFS-related bodily experiences and challenges. Transcripts were thematically analyzed. Results: The majority of participants ( n = 26/42, 62%) had ≥1 primary cancer. The mean age at first cancer diagnosis was 21 years (range = 0.5-35 years). Participants described challenges relating to the body due to frequent self-monitoring, whole-body magnetic resonance imaging scans, risk-reducing surgeries, and/or cancer treatments. Heightened body awareness and vigilance not only prompted self-protective behaviors but also triggered worry and distress. AYAs coped with bodily changes and concerns by seeking doctors' reassurance, engaging in health-protective behaviors, and reframing perceptions of their altered bodies. Conclusion: Findings suggest AYAs with cancer predisposition syndromes such as LFS experience difficulties relating and adjusting to the body that may compromise psychosocial health. Our results demonstrate that these difficulties may arise across the time course of genetic disease, including before a cancer diagnosis. Clinicians might support AYAs by conducting routine psychosocial risk assessments, providing anticipatory guidance regarding body-related challenges, sharing peer support resources, and referring to mental health providers, as needed.

Objective: Donation after circulatory death heart transplantation potentially increases donor allografts, especially for patients with lower listing status. We assessed the outcomes of donation after circulatory death heart transplantation in patients bridged with durable left ventricular assist devices., Methods: The United Network for Organ Sharing database was queried for adult heart transplants using donation after circulatory death donors from 2019 to 2022. Patients were stratified between those with durable left ventricular assist devices and those with intra-aortic balloon pump, inotropic, or no bridging support (control group). Primary outcome was 1-year mortality. Secondary end points were hospital length of stay, stroke, pacemaker implantation, dialysis, and acute rejection before discharge., Results: A total of 160 left ventricular assist device recipients and 311 control recipients met study inclusion criteria. Recipients bridged with left ventricular assist devices were younger (55 vs 58 years, P < .001) with lower body mass index (28.3 vs 30.3, P < .001), longer waitlist times (112 vs 34 days, P < .001), longer out of body times (5.7 vs 4.6 hours, P < .001), and less frequent normothermic regional perfusion (31% vs 40%, P = .049). Patients with left ventricular assist devices commonly underwent transplantation at United Network for Organ Sharing status 3 and 4 (92%), whereas control patients underwent transplantation at status 2 (27%), status 3 (10%), status 4 (30%), or status 6 (30%). Kaplan-Meier analysis showed no difference in 1-year mortality between groups (P = .34). However, acute rejection was higher in the unadjusted left ventricular assist device cohort (26% vs 13%, P < .001). On multivariable logistic regression, left ventricular assist device was an independent predictor of acute rejection (odds ratio, 2.21, 95% CI, 1.32-3.69, P = .002)., Conclusions: Durable left ventricular assist devices may be associated with a higher risk of developing an early inflammatory response in donation after circulatory death heart transplantation; however, 1-year survival was similar between groups., Competing Interests: Conflict of Interest Statement G.T.S. receives consulting fees from Abbott and Medtronic. N.U. receives grant support from and serves as a consultant for Abbott and Medtronic. All other authors reported no conflicts of interest. The Journal policy requires editors and reviewers to disclose conflicts of interest and to decline handling or reviewing manuscripts for which they may have a conflict of interest. The editors and reviewers of this article have no conflicts of interest., (Copyright © 2024 The American Association for Thoracic Surgery. Published by Elsevier Inc. All rights reserved.)

Introduction: Providers and patients have expressed concern that care provided through telehealth results in poorer outcomes than traditional in-person care. On the contrary, we hypothesized that patients with cirrhosis engaging in video/phone-based outpatient gastroenterology/hepatology tele-visits do not differ in mortality from those receiving in-person outpatient clinic visits., Methods: This was a retrospective, case-control study using Veterans Health Administration administrative data of veterans with a cirrhosis diagnosis. Cases were patients who died between April 2021 and July 2022 and had a cirrhosis diagnosis for ≥1 year before death. For each case, a control was randomly selected from the pool of patients alive on the date of death of the case (index date) and matched on age, average Model for End-Stage Liver Disease, and number of gastroenterology/hepatology clinic visits in the prior year. Primary exposure variable was % tele-visits (video/phone) out of total visits in the year before the index date, scaled in 10% increments. Conditional logistic regression was used to assess the association between mortality and % tele-visits. A secondary analysis matched on electronic Child-Turcotte-Pugh score rather than Model for End-Stage Liver Disease., Results: Two thousand nine hundred thirty-three cases were identified and matched with 2,933 controls. After adjusting for covariates, tele-visit-based outpatient care was associated with a small reduction in mortality (odds ratio TH = 0.95, 95% confidence interval = 0.94-0.97). Matching on electronic Child-Turcotte-Pugh score did not change the results., Discussion: Our findings suggest that outpatient cirrhosis care by tele-visit is associated with outcomes no worse than traditional in-person visits. This should reassure providers who hesitate to provide virtual care to patients with cirrhosis due to concerns for poorer outcomes., (Copyright © 2024 by The American College of Gastroenterology.)

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.)

Objectives: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit., Research Design: Qualitative description with content analysis., Setting: Interviews with eight parents of eight children who died in the paediatric intensive care unit 7-11 years prior., Main Outcome Measures: Descriptive categories of parents' perceptions of end-of-life needs., Findings: Parents identified four shifting and intersecting categories of needs: To be together, To make sense of the child's evolving clinical care, To manage institutional, situational, and structural factors, and To navigate an array of emotions in a sterile context. Being closely connected with the child was highly important, but often intersected with other domains, requiring nurses' support. Parents' memories demonstrated persistent uncertainty about their child's end-of-life care that influenced their long-term grief., Conclusions: Intersections between parent-identified care needs suggest potential mechanisms to strengthen nurses' care for dying children. Equipped with the knowledge that the parent-child bond often shapes parents' priorities; nurses should aim to facilitate connections amidst paediatric intensive care unit processes. Ongoing uncertainty in parents' adaptation to loss suggests that attention to instances when needs intersect can have a lasting impact on parents' grief., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Introduction: Experiences of illness change the physical body and embodiments, or the ways in which the world and the self are known through the body. When illness is anticipated, such as with inherited cancer predisposition syndromes, risk becomes embodied and shared in family groups. Embodied risk is experienced whether or not symptoms have manifested. To examine how individuals and families with genetic risk experience the world and understand their disease through their bodies, we employ Li-Fraumeni syndrome (LFS) as an exemplar. LFS is a rare, genetic, cancer predisposition syndrome with nearly 100% lifetime cancer risk starting from birth, limited opportunities for prevention, rigorous screening protocols, and early mortality., Methods: Forty-five families, including 117 individuals aged 13-81 years, enrolled in the National Cancer Insitute's LFS study (NCT01443468) completed 66 open-ended interviews regarding LFS experiences. An interdisciplinary team used modified grounded theory to explore physical aspects of living with LFS in psychosocial contexts., Findings: The physicality of living with LFS included constant monitoring of LFS bodies across the family to identify physical change that might indicate carcinogenesis. Cancer screening, risk reduction, and treatment acted as dually protective and invasive, and as an unavoidable features of LFS. Connections between family members with similar embodiments normalized aesthetic changes and supported coping with visible markers of difference. In some circumstances, participants objectified the body to preserve the self and important relationships. In others, intense pain or loss created thresholds beyond which the self could no longer be separated from the body to support coping., Discussion: This paper focuses on Li-Fraumeni syndrome, a familial condition with a well-established genetic identity in which the body-self is experienced in relation to important others, to medical imaging, and to historical experiences with cancer. We expand on theories of embodied risk and inter-embodiment to describe experiences across disease trajectories, with attention to division and union between body, self, and other., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

In the era of managed care, evidence-based practice, and short term, solution focused interventions, clinicians in agency based settings generally do not have the luxury of long-term contact with bereaved children. Although a substantial, yet controversial, literature argues that children cannot fully resolve early loss until adulthood, limited attention is given to how children's understandings of early loss shift as their cognitive capacities mature. This article argues the emotional experience of grief shifts: 1) as children grapple with both normative life changes and the tasks of mourning, and 2) as their cognitive and emotional development allow them to understand and question aspects of their deceased parent's life and death in new ways. This article will present an overview of longitudinal and cross-sectional research on the long-term impact of childhood grief. We then suggest the ways bereaved children and adolescents revisit and reintegrate the loss of a parent as their emotional, moral, and cognitive capacities mature and as normative ego-centrism and magical thinking decline. To demonstrate these ideas, we draw on the case of a parentally bereaved boy and his family presenting across agency-based and private-practice work over the course of 14 years. This case suggests the need for coordinated care for children who are moving beyond the initial trauma of parental loss into various stages of grief and reintegration. While the loss of a parent is permanent and unchanging, the process is not: it is part of the child's ongoing experience. (Worden, 1996, p. 16).