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Ricardo João Teixeira,1–4 Allison J Applebaum,5 Sangeeta Bhatia,6 Tânia Brandão7 1Department of Education and Psychology, University of Aveiro, Aveiro, Portugal; 2Clínica daOrdem, Porto, Portugal; 3CESPU, Institute of Research and Advanced Training in Health Sciences and Technologies, Gandra, Portugal; 4MamaHelp, Breast Cancer Support Center, Porto, Portugal; 5Memorial Sloan Kettering Cancer Center, New York, NY, USA; 6Department of Psychology, Gargi College, University of Delhi, New Delhi, India; 7Departamento de Psicologia, Centro de Investigação em Psicologia (CIP-UAL), Universidade Autónoma de Lisboa Luís de Camões, Lisboa, Portugal Purpose: A growing number of studies have explored the psychosocial burden experienced by cancer caregivers, but less attention has been given to the psychophysiological impact of caregiving and the impact of caregivers’ coping strategies on this association. This paper reviews existing research on the processes underlying distress experienced by cancer caregivers, with a specific focus on the role of coping strategies on psychophysiological correlates of burden.Methods: A broad literature search was conducted in health-related databases namely ­MEDLINE, Science Citations Index Expanded, Scopus, and PsycINFO, using relevant search terms. All types of studies published in English were considered for inclusion.Results: We found that cancer caregiving was related to increased blood pressure, dysregulation of autonomic nervous system, hypothalamic–pituitary–axis dysregulation, immune changes, and poor health-related behaviors. We also found that problem-focused coping was associated with decreased caregiver burden, decreased depression, and better adjustment, while emotion-focused coping was related to higher levels of posttraumatic growth and psychological distress. The way coping impacts psychophysiological correlates of burden, however, remains unexplored.Conclusion: A better understanding of the psychophysiological elements of caregiver burden is needed. We propose a model that attends specifically to factors that may impact psychophysiological correlates of burden among cancer caregivers. Based on the proposed model, psychosocial interventions that specifically target caregivers’ coping and emotion regulation skills, family functioning, and self-care are endemic to the preservation of the health and well-being of this vulnerable population. Keywords: cancer, caregiver, burden, coping, psychophysiology

Meaning-Centered Psychotherapy (MCP) is a manualized, evidence-based intervention designed to help cancer patients to find meaning and alleviate distress. Meaning-Centered Psychotherapy Training (MCPT) is a multicomponent program for cancer care clinicians that consists of didactics, group experiential learning, and role-plays with simulated patients to learn MCP and acquire skills to deliver it in real-world oncology settings. The efficacy and impact of MCPT for multidisciplinary cancer care clinicians to learn and disseminate MCP is described and evaluated. A multilevel evaluation based on the RE-AIM framework was utilized to assess the efficacy of the MCPT program over the initial 5 years of the program. The outcomes of the evaluation supported MCPT goals. Three hundred forty-two participants attended MCPT. Overall satisfaction measured in the post-training assessment was high. Significant increases in MCP skills were demonstrated by participants over the course of the role-play sessions, and participants showed significant improvements in pre/post-training MCP knowledge assessment scores, as well as significant increases in self-reported overall MCP skills and core competencies. Follow-up survey responses indicate that MCP trainees were utilizing MCP, had made changes to their clinical practice, and progressed on individual implementation goals. During the first 5 years, the MCPT program was successfully developed, established, implemented, and shown to be effective in the dissemination of MCP across the RE-AIM domains. Future directions for training and implementation research include increasing diversity of providers and investigating the impact of the program on patient outcomes., (© Society of Behavioral Medicine 2024. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Introduction: Hematopoietic stem cell transplantation (HCT) is an intensive and invasive procedure used in cancer treatment that can lead to posttraumatic stress disorder (PTSD) symptoms. These symptoms are frequently overlooked in oncology and general health care settings. The suitability and utility of the Primary Care PTSD Screen for DSM-5 (PC-PTSD-5) within the cancer population remains uncertain. This study aims to evaluate its performance as a brief (five-item) case-finding screening alternative to the longer (20-item) PTSD Checklist for DSM-5 (PCL-5) in survivors who received an HCT 1 to 5 years ago., Methods: A total of 817 cancer survivors completed the PC-PTSD-5 and PCL-5 during recruitment for a randomized clinical trial. Optimal cut scores for identifying probable PTSD and item performance were determined using indices correcting for chance and item response theory analyses., Results: Of the HCT sample, 10.4% screened as positive for probable DSM-5 PTSD using the PCL-5. The PC-PTSD-5 exhibited strong internal consistency and significant associations with PCL-5 scores (total, r = .82; items, rs = .56-.61). A cutoff score of 2 provided optimal sensitivity for screening (κ[Se] = .95), whereas a cut score of 4 demonstrated the highest efficiency for detecting a probable DSM-5 PTSD diagnosis on the PCL-5 (κ[Eff] = .39). Item response theory analyses indicated that item 4 (numbing) of the PC-PTSD-5 yielded the most informative data, with other items potentially lacking incremental utility., Conclusion: Although not an instrument validation study, these findings offer efficient evidence for using the PC-PTSD-5 as a succinct screening tool among cancer survivors in a clinical context., Trials Registration: ClinicalTrials.gov, NCT04058795, registered 8/16/2019., (© 2024 American Cancer Society.)

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.

Objectives: This study aimed to examine perceived barriers and facilitators to caregiver inclusion in the hospital care of older adult family members or friends through the perspectives of (1) hospitalized older adults, (2) caregivers of a hospitalized older adult, (3) healthcare clinicians, and (4) policymakers., Methods: This qualitative descriptive exploratory study utilized semi-structured interviews with N  = 24 participants and was analyzed using a framework method., Results: Eight codes arose that were categorized into four domains guided by the Social Ecological Model. Individual-level factors were determined both for the caregiver and for the clinician. Relationship-level factors were revealed pertaining to communication style and method. Hospital-level factors included hospital environment and resources. Societal-level factors included healthcare climate and policies., Discussion: Findings indicated that hospital workflows and policies inadequately support family caregivers. This study highlights potential solutions to caregivers' integration into hospital workflows.

Background: An advanced cancer diagnosis can be associated with a significant profile of distress. Psychedelic compounds have shown clinically significant effects in the treatment of psychological distress in patients with advanced-stage cancer. Given the challenges of delivering timely and effective intervention in the advanced cancer context, it is possible that an alternative, more pragmatic, approach lies in psychedelic 'microdosing'. Microdosing refers to repeated administration of psychedelics in sub-hallucinogenic doses. The purpose of this study is to evaluate the feasibility of conducting a full-scale randomised controlled trial comparing psychedelic microdose-assisted-meaning-centred psychotherapy (PA-MCP) to standard meaning-centred psychotherapy (MCP) in New Zealand indigenous (Māori) and non-indigenous people with advanced cancer and symptoms of anxiety and/or depression. Although MCP is a well-established psychotherapeutic treatment in advanced cancer populations, the potential efficacy and effectiveness of this therapy when delivered alongside a standardised microdose regimen of a psychedelic compound have not been investigated., Methods: Participants with advanced-stage cancer and symptoms of anxiety and/or depression (N = 40; 20 Māori, 20 non-Māori) will be randomised under double-blind conditions to receive 7 sessions of MCP alongside 13 doses of either an LSD microdose (4-20 µg) (PA-MCP) or inactive placebo (placebo-MCP). The feasibility, acceptability, and safety of this intervention and physiological and psychological measures will be recorded at baseline, at each session of MCP, and at a 1-month and 6-month follow-up., Discussion: Our findings will evaluate the feasibility, acceptability, and safety of a larger randomised controlled trial and provide an initial indication of the potential benefits of psychedelic microdosing for psychological distress in advanced-stage indigenous and non-indigenous cancer patients., Trial Registration: NZCTR, ACTRN12623000478617. Registered 11 May 2023.  https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385810&isReview=true ., (© 2024. The Author(s).)

We tested whether patients' trust in physician moderated the hypothesized indirect association between intolerance of uncertainty (IU; inability to tolerate the unknown) and emotional distress through the mediator, experiential avoidance (EA; efforts to avoid negative emotions, thoughts, or memories), in patients with advanced cancer. The sample included 108 adults with Stage III or IV cancer (53% female; M age = 63 years) recruited from a metropolitan cancer center. All constructs were measured by standardized self-report instruments. The PROCESS macro for SPSS tested the moderated mediation model. IU evidenced significant direct and indirect relationships with anxiety and depressive symptoms. Trust in physician moderated the indirect relationship between IU and anxiety (not depressive symptoms), albeit in an unexpected direction. Specifically, the indirect relationship between IU and anxiety symptoms through EA was significant for those with moderate to high physician trust but not low trust. Controlling for gender or income did not change the pattern of findings. IU and EA may be key intervention targets, particularly in acceptance-or meaning-based interventions for patients with advanced cancer., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objective: Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source-Caregiver TM (CSS-CG, 33-item), an electronic distress screening and automated referral program with a consultation (S + C) to improve caregiver unmet needs, quality of life, anxiety, depression, and distress relative to Enhanced Usual Care (EUC; access to educational materials)., Method: 150 caregivers of patients with varying sites/stages of cancer were randomized to S + C or EUC and completed assessments at baseline, 3-months post-baseline, and 6-months post-baseline. A subset of participants (n = 10) completed in-depth qualitative interviews., Results: S + C was feasible: among 75 caregivers randomized to S + C, 66 (88%) completed CSS-CG and consultation. Top concerns reported were: (1) patient's pain and/or physical discomfort; (2) patient's cancer progressing/recurring; and (3) feeling nervous or afraid. Differences between groups in improvements on outcomes by T2 and T3 were modest (ds < 0.53) in favor of S + C. Qualitative data underscored the helpfulness of S + C in connecting caregivers to support and helping them feel cared for and integrated into cancer care., Conclusions: S + C is feasible, acceptable, and yields more positive impact on emotional well-being than usual care. Future studies will examine programmatic impact among caregivers experiencing higher acuity of needs, and benefits of earlier integration of S + C on caregiver, patient, and healthcare system outcomes., (© 2024 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Serving as a family caregiver for, and ultimately losing, a parent with advanced cancer in emerging and young adulthood has substantial, life phase-specific implications for psychosocial development. This qualitative study characterizes domains of psychosocial development impacted by cancer caregiving and parental death in this life phase. As part of a larger study, 33 bereaved emerging/young adult caregivers of parents who died following advanced cancer completed semi-structured interviews. A thematic analysis leveraging the constant comparative method was conducted by two coders and generated three themes, which described impacts of caregiving on: identity, life path, and relational intimacy and roles. Analyses also defined specific outcomes within these domains. Findings suggest that cancer caregiving-loss experiences can greatly influence developmental pursuits in this life phase. Findings validate a range of possible psychosocial impacts these caregivers may experience and can guide development of supportive resources for this growing subgroup of bereaved family caregivers.

Objectives: Family and friend caregivers often feel overwhelmed by and ill-prepared for their responsibilities. Many feel helpless living with uncertainty about the outcome of the patient's illness, which leads to existential distress. Supportive care interventions that address existential distress by promoting meaning and purpose buffer the negative effects of caregiver burden and promote resilience and growth. The purpose of this scoping review is to describe the depth and breadth of available interventions targeting caregiver existential distress., Methods: We followed the Joanna Briggs Institute's scoping review methods and applied the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension checklist. SCOPUS, Ovid MEDLINE and PsycINFO databases were searched for interventions that targeted existential distress by promoting meaning-making, spiritual well-being, post-traumatic growth and/or benefit finding for caregivers of seriously ill adult patients., Results: We screened 1377 titles/abstracts and 42 full-text articles. Thirty-one articles (28 unique studies) met inclusion criteria. Most interventions were designed for caregivers supporting patients with cancer (n=14) or patients receiving palliative care (n=9). Promising interventions included Meaning-Centered Psychotherapy for Cancer Caregivers, Meaning-Based Intervention for Patients and their Partners, Legacy Intervention for Family Enactment, Family Participatory Dignity Therapy and Existential Behavioural Therapy. More than half of the studies (n=20, 64%) were in the feasibility/acceptability/pilot stage of intervention testing., Conclusion: Large randomised controlled trials with more diverse samples of caregivers are needed. Future research should explore the impact of delivering meaning-making interventions to caregivers throughout the illness trajectory. Developing strategies for scaling up and conducting cost analyses will narrow the research and practice gap for meaning-making interventions., Competing Interests: Competing interests: We have no conflicts of interest to report related to the completion of this project. Dr. AJA receives support from Blue Note Therapeutics and Beigene. Dr. NSM and Dr. TG are Cambia Health Foundation Sojourns Scholars., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Emerging and young adult caregivers (EYACs) who provide care to their parents are a hidden, unsupported population of caregivers. Research identifies information sharing or withholding as a key aspect of caregivers' ability to cope and adjust, which may be especially critical when a parent is diagnosed with advanced cancer. The goal of this study was to examine the impact of parent information sharing/withholding on EYACs' caregiving and coping experiences. We conducted in-depth, semi-structured interviews with 33 EYACs between the ages of 18-35 who cared for a parent that died of advanced cancer. Interview transcripts were thematically analyzed. Three factors played a role in how parents' information sharing/withholding affected EYACs' caregiving/coping: 1) topic, 2) timing, and 3) who is included. Findings highlight the adaptive functioning of parents' information sharing and negative outcomes associated with information withholding, illustrating how parents' disclosure decisions function to promote or inhibit EYACs' care involvement and coping.

Objective: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services., Methods: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis., Results: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards., Conclusion: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers., (© 2023 John Wiley & Sons Ltd.)

Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations. Descriptive statistics and bivariate analyses were performed to summarize the findings. While 96% of participants reported routine pre-HSCT psychosocial assessment of patients, only 10.6% routinely used a validated transplant risk-assessment measure. Just 27% routinely performed follow-up psychosocial assessments. In contrast, only 47% of participants routinely assessed the psychosocial needs of family caregivers pre-HSCT, and 13% routinely performed follow-up assessments for caregivers. Most (90%) reported social workers were the primary providers of assessments. While patient-report measures were used for evaluation, the majority of assessments were clinical interviews. No significant differences were found between programs that treated adult and pediatric patients versus those only treating adult patients. Our findings highlight the lack of standard psychosocial practices for patients and family caregivers undergoing HSCT and we offer recommendations to fill this gap., (© 2023. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

The impact of an intensive care unit (ICU) admission on family caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT) has not been well described. Aims of this study were to determine the feasibility of conducting research with family caregivers of HSCT patients during an ICU admission and generate preliminary data about their experiences and engagement in care. Using a mixed-methods, repeated measures design, we collected data from family caregivers after 48 hr in the ICU (T1) and at 48 hr after transferring out of ICU (T2). Enrolling HSCT caregivers in research while in the ICU was feasible (10/13 consented; 9/10 completed data collection at T1); however, data collection at T2 was not possible for most caregivers. Caregiver distress levels were high, and engagement in care was moderate. The three themes that emerged from interviews ( n = 5) highlighted that although HSCT family caregivers faced many challenges and received limited support during their ICU experience, they were able to access their own personal resources and demonstrated resilience.

Background: Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define "prognosis.", Aim: The present study examined how patients with advanced cancer conceptualize their "prognosis." It also explored how patients assigned value to prognostic information and the impact of prognosis on life perspectives., Design: A phenomenological approach was used to analyze semi-structured interviews with individuals with advanced cancer to examine how patients define prognosis., Setting/participants: English and Spanish-speaking patients with advanced cancer ( N  = 29) were recruited from ambulatory clinics at a comprehensive cancer center in New York City., Results: To conceptualize prognosis, patients focused on concrete medical data, anticipated survival and quality of life, impact on meaningful life events, uncertainty, and physician affect. They discussed the importance of maintaining normalcy despite prognosis, knowledge as a form of coping, information reframing, and altered decision-making as means of coping with prognostic information., Conclusions: Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.

Objective: Death anxiety, represented by the HDQLIFE™ Concern with Death and Dying (CwDD) patient-reported outcome (PRO) questionnaire, captures a person's worry about the death and dying process. Previous work suggests that death anxiety remains an unremitting burden throughout all stages of Huntington disease (HD). Although palliative interventions have lessened death anxiety among people with advanced cancer, none has yet to undergo testing in the HD population. An account of how death anxiety is associated with longitudinal changes to aspects of health-related quality of life (HRQoL) would help optimize neuropalliative interventions for people with HD. Methods: HDQLIFE collected PROs concerning physical, mental, social, and cognitive HRQoL domains and clinician-rated assessments from people with HD at baseline and 12 and 24 months. Linear mixed-effects models were created to determine how baseline death anxiety was associated with follow-up changes in HRQoL PROs after controlling for baseline death anxiety and other disease and sociodemographic covariates. Results: Higher baseline HDQLIFE CwDD is associated with 12- and 24-month declines in HDQLIFE Speech Difficulties, neurology quality of life (NeuroQoL) Depression, Suicidality, HDQLIFE Meaning and Purpose, and NeuroQoL Positive Affect and Well-being. Interpretation: Death anxiety may be a risk factor for worsening mental health and speech difficulty. A further prospective study is required to evaluate whether interventions on death anxiety or mental health generally can reduce declines in HRQoL for people with HD over time.

Context: Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans., Objectives: To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions., Methods: We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads)., Results: Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly., Conclusion: Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS ( n = 14) and pandemic EYACs ( n = 26). A thematic analysis of the interview transcripts of pandemic EYACS ( n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

In the past decade, the demand for home-based care has been amplified by the Coronavirus disease 2019 pandemic. Home-based care has significant benefits for patients, their families, and healthcare systems, but it relies on the often-invisible workforce of family and friend caregivers who shoulder essential health care responsibilities, frequently with inadequate training and support. Hematopoietic cell transplantation (HCT), a potentially curative but intensive treatment for many patients with blood disorders, is being increasingly offered in home-based care settings and necessitates the involvement of family caregivers for significant patient care responsibilities. However, guidelines for supporting and preparing HCT caregivers to effectively care for their loved ones at home have not yet been established. Here, informed by the literature and our collective experience as clinicians and researchers who care for diverse patients with hematologic malignancies undergoing HCT, we provide considerations and recommendations to better support and prepare family caregivers in home-based HCT and, by extension, family caregivers supporting patients with other serious illnesses at home. We suggest tangible ways to screen family caregivers for distress and care delivery challenges, educate and train them to prepare for their caregiving role, and create an infrastructure of support for family caregivers within this emerging care delivery model., Competing Interests: Conflict of interest statement There are no conflicts of interest to report., (Copyright © 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Older patients with hematologic malignancies are increasingly considered for allogeneic hematopoietic cell transplant (allo-HCT). However, older patients often have increased comorbidities and thus may require an increased level of post-transplant care. These factors can contribute to increased caregiver distress, which has been associated with worsened health outcomes for caregivers and patients. To examine predictors of caregiver distress and support group participation in caregivers of older allo-HCT patients, we retrospectively reviewed charts of 208 patients aged 60 and older who underwent their first allo-HCT at our institution from 2014 through 2016. We systematically characterized and identified the incidence of caregiver distress and attendance in a caregiver support group from the start of conditioning through 1 year post allo-HCT. Evidence of caregiver distress and support group participation was recorded by reviewing clinical and/or social work documentation. We found that 20 caregivers (10%) endorsed stress and 44 caregivers (21%) attended our support group at least once. A patient's prior history of psychiatric diagnosis ( p = .046) or the use of potentially inappropriate medications for older adults ( p = .046) was found to be associated with caregiver stress. Caregivers who were spouses or partners of patients ( p = .048) or caregivers of married patients were more likely to attend the support group ( p = .007). While limited by retrospective design and likely underreporting, this study reveals factors associated with caregiver distress in the older allo-HCT caregiver population. This information can help providers identify caregivers at risk for distress and improve caregiver resources, which may improve both caregiver and patient outcomes., Competing Interests: Dr. Perales reports honoraria from Abbvie, Astellas, Bristol-Myers Squibb, Celgene, Equilium, Incyte, Karyopharm, Kite/Gilead, Merck, Miltenyi Biotec, MorphoSys, Novartis, Nektar Therapeutics, Omeros, Takeda, VectivBio AG, and Vor Biopharma. He serves on DSMBs for Cidara Therapeutics, Medigene, Sellas Life Sciences, and Servier, and the scientific advisory board of NexImmune. He has ownership interests in NexImmune and Omeros. He has received research support for clinical trials from Incyte, Kite/Gilead, Miltenyi Biotec, and Novartis. He serves in a volunteer capacity as a member of the Board of Directors of the American Society for Transplantation and Cellular Therapy (ASTCT) and Be The Match (National Marrow Donor Program, NMDP), as well as on the CIBMTR Cellular Immunotherapy Data Resource (CIDR) Executive Committee. Dr. Giralt serves on the scientific advisory board of Actinium, Celgene, Bristol-Myers Squibb, Sanofi, Amgen, Pfizer, GlaxoSmithKline, JAZZ, Janssen, and Omeros. He reports research consultancy for Kite. He has received research support for clinical trials from Actinium, Bristol-Myers Squibb, Celgene, Pfizer, Takeda, Janssen, Amgen, and Sanofi. Dr. Jakubowski reports ownership interest in Novartis. The other authors have no conflicts of interest to disclose., (© 2023 Harborside™.)

Background: Family caregivers of people with cancer report high levels of psychological distress. Yoga, with well-documented mental health benefits, could be a useful intervention to address distress in this population. However, little is known about yoga practices among cancer caregivers. The present study evaluates their interest in and barriers to yoga practice., Methods: We conducted a cross-sectional survey study of family caregivers of cancer patients at five suburban satellite locations of an academic cancer center. Survey items and statistical analyses focused on yoga usage as well as interest in and barriers to yoga practice., Results: Among 539 participants, most were females (64.8%), white (84.2%), and caring for a spouse or partner (54.7%). Interest in practicing yoga among study participants was 42.3%. Increased interest was independently associated with being females (odds ratio [OR] = 3.30, 95% confidence interval [CI] = 1.98-5.51, P < 0.001) and employed (part-time: OR = 2.58, 95% CI = 1.1-6.18, P = 0.03; full-time: OR = 1.77, 95% CI = 1.1-2.01, P = 0.02). Few participants (6.3%) were currently practicing yoga, although 31% had done so in the past. Sixty-one percent of those who had practiced before their loved one's diagnosis stopped practicing yoga afterward. Commonly cited barriers to yoga practice included time constraints (37.3%) and psychological obstacles (33.6%). About a quarter of those who had never practiced yoga lacked awareness of yoga's benefits (26.6%)., Conclusion: Despite the low use of yoga, interest in practicing was moderately high, especially among women and employed caregivers. As caregivers face numerous barriers to yoga practice, strategies are needed to overcome these barriers and help them access yoga's health benefits., Competing Interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Mao reports grants from Tibet Chee Zheng Tibetan Medicine Co. Ltd. and from Zhongke Health International LLC outside the submitted work. Dr. Applebaum receives support from Blue Note Therapeutics. All other authors declare no potential conflicts of interest., (Copyright: © 2023 International Journal of Yoga.)

Background: Caregivers of patients with cancer play a crucial role in the health of the person they care for, and in the healthcare system at large. Family caregivers receive minimal support, despite being at greater risk for anxiety and depression than patients themselves. Cognitive behavioral therapy (CBT), an effective therapy for anxiety and depression, has shown mixed efficacy when delivered to cancer caregivers. Emotion Regulation Therapy (ERT), a contemporary CBT, may uniquely target processes underlying distress associated with caregiving. Therefore, we adapted both CBT and ERT to target the needs of caregivers (i.e., CBT-C and ERT-C) and are conducting a multi-site randomized trial to examine the comparative efficacy of these interventions., Methods: Family cancer caregivers (n = 200) reporting distress related to caregiving are recruited from two academic cancer centers and randomly assigned to either ERT-C or CBT-C. Caregivers in both interventions engage in eight weekly one-hour sessions by videoconference with a trained interventionist. Caregiver participants complete study assessments at baseline, post-treatment, 3-and 6-months follow-up. Patients of each caregiver can also enroll in the study and complete assessments at baseline and 3-months follow-up. Outcome measures include psychosocial constructs such as anxiety, depression, quality of life, as well as proposed mechanistic constructs and salivary markers of stress and inflammation., Conclusions: The results of this study will advance the science of caregiving interventions in cancer by addressing a critical gap in our ability to mitigate anxiety and depression in caregivers, as well as further our understanding of how these changes may influence patients' outcomes., Competing Interests: Declaration of Competing Interest (All co-authors please indicate here if you have any conflicts of interests) Dr. Applebaum and Dr. Jacobs receive support from Blue Note Therapeutics., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Objective: Caregivers of patients with cancer are at significant risk for existential distress. Such distress negatively impacts caregivers' quality of life and capacity to serve in their role as healthcare proxies, and ultimately, contributes to poor bereavement outcomes. Our team developed Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers., Method: Nine caregivers of patients with glioblastoma multiforme (GBM) enrolled in a pilot randomized controlled trial evaluating the feasibility, acceptability, and effects of MCP-C, and completed in-depth interviews about their experience in the therapy. One focus group with three MCP-C interventionists was also completed., Results: Four key themes emerged from interviews: (1) MCP-C validated caregivers' experience of caregiving; (2) MCP-C helped participants reframe their "caregiving identity" as a facet of their larger self-identity, by placing caregiving in the context of their life's journey; (3) MCP-C enabled caregivers to find ways to assert their agency through caregiving; and (4) the structure and sequence of sessions made MCP-C accessible and feasible. Feedback from interventionists highlighted several potential manual changes and overall ways in which MCP-C can help facilitate caregivers' openness to discussing death and engaging in advanced care planning discussions with the patient., Significance of Results: The overarching goal of MCP-C is to allow caregivers to concurrently experience meaning and suffering; the intervention does not seek to deny the reality of challenges endured by caregivers, but instead to foster a connection to meaning and purpose alongside their suffering. Through in-depth interviews with caregivers and a focus group with MCP interventionists, we have refined and improved our MCP-C manual so that it can most effectively assist caregivers in experiencing meaning and purpose, despite inevitable suffering.

Objective: In patients with cancer across the illness trajectory, treatment decisions are often influenced by one's perception of their prognosis (i.e., curability of disease, life expectancy, quality of life). However, research on how patients understand their prognosis (i.e., prognostic understanding) has been limited by simplistic measurement tools that fail to capture the complexity of the construct. This study describes the initial development of a measure of prognostic understanding: the Prognostic Understanding Perceptions Scale (PUPS) for use in patients with advanced cancer., Method: An initial pool of 16 candidate items were developed through semi-structured interviews with 15 experts (oncology, psycho-oncology and palliative care professionals) and 30 advanced cancer patients. We investigated the dimensionality, internal item structure, item difficulty and item discrimination of the item pool using exploratory factor analysis (EFA), classical test theory (CTT) and item response theory (IRT) analyses. Convergent and divergent validity were based on correlations between PUPS, terminal illness acknowledgement, and self-report measures of depression, anxiety, hopelessness, and death acceptance., Results: The final measure was comprised of nine items encompassing three factors (perceived curability, illness trajectory, treatment options), yielding strong psychometric properties., Conclusion: These results provide preliminarily support for PUPS as a multifaceted measure of prognostic understanding developed for use in patients with advanced cancer. Preliminary findings also highlight the potential utility of the PUPS for clinical settings, as a means of enhancing communication between patients and physicians., (© 2022 John Wiley & Sons Ltd.)

Objective: This report describes a case of concurrent engagement in Meaning-Centered Psychotherapy (MCP) and Meaning-Centered Psychotherapy for Caregivers (MCP-C), brief, structured interventions designed to address existential distress in patients with cancer and cancer caregivers., Method: Descriptions of the independent courses of MCP/MCP-C treatment for a patient with Glioblastoma Multiforme and his caregiver are provided with both unique and shared themes around sources of meaning highlighted., Results: The patient and caregiver each experienced enhanced well-being as a result of receiving MCP and MCP-C, as well as shared benefits of deepened connectedness. Engagement in MCP/MCP-C had important implications for their experience of the patient's end-of-life and the caregiver's bereavement., Significance of Results: MCP and MCP-C are interventions typically delivered independently to patients and caregivers. The individual and shared benefits derived from MCP/MCP-C by this patient and caregiver point to the potential benefits of concurrent engagement and the need for future dyadic research on MCP/MCP-C.

Background: The importance of deriving benefit and meaning has been identified among cancer caregivers, but this has yet to be examined in the context of rare cancers. We sought to characterize unmet needs and experiences of caregivers of patients with Erdheim-Chester disease (ECD) and other histiocytic neoplasms (HN) and to identify factors associated with finding benefit and meaning-making in providing care for patients with rare cancers., Methods: Caregivers of patients with ECD and other HN completed quantitative surveys. Linear univariable regression modeling examined associations between unmet needs, social and family support, and intolerance of uncertainty with benefit finding and meaning-making. A subset participated in qualitative interviews assessing experiences of rare cancer caregiving that were analyzed with applied thematic analysis (NCT039900428)., Findings: Of caregivers ( N  = 92, M  = 54 years old, 68% female) of patients with ECD (75%) and other HN (25%), 78% reported moderately or severely unmet support needs, most frequently informational (58%) and psychological/emotional (66%) needs. Caregivers with unmet informational, psychological/emotional, and social support needs, difficulty tolerating uncertainty, a longer duration of the patient's illness, lower social support, more family conflict, and higher anxiety and depression symptoms demonstrated less benefit finding and meaning-making ( p s <.05). Qualitative interviews ( N  = 19) underscored information and support needs and the capacity to derive meaning from caregiving., Interpretation: Rare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving. Findings highlight targets for interventions to improve support for caregivers with HN and other rare cancers., Funding: NIH P30 CA008748 (PI: Craig Thompson, MD), NIH T32 CA009461 (H.M.; PI: Jamie Ostroff, PhD), Frame Family Fund (E.L.D.), Applebaum Foundation (E.L.D.)., Competing Interests: Dr. Applebaum receives support from Blue Note Therapeutics. Dr. Diamond discloses unpaid editorial support from Pfizer Inc and serves on an advisory board for Day One Therapeutics and Springworks Therapeutics, both outside the submitted work and serves on the Histiocytosis Association Board of Trustees (unpaid) and Erdheim-Chester Disease Global Alliance -Medical Advisory Board (unpaid)., (© 2022 The Authors.)

Objective: Caregivers are critical in advanced care planning (ACP) discussions, which are difficult but necessary to carry out patients' goals of care. We developed and evaluated the feasibility and acceptability of a communication training to equip caregivers of patients with malignant brain tumors with skills to navigate ACP conversations., Method: Caregivers completed a 2-h virtual training addressing ACP Discussions with Your Loved One and ACP Discussions with the Medical Team . A pre-training assessment was completed at baseline and a training evaluation was completed one day post-training. A subset of participants completed semi-structured interviews 2 months post-training., Results: Of 15 caregivers recruited, 9 attended the training and 4 completed qualitative interviews. Post-training, 40% felt confident in discussing ACP with loved ones and 67% felt confident doing so with healthcare professionals; 100% reported feeling confident in using skills learned in the training to facilitate these conversations. Data from qualitative interviews highlighted additional benefits of the training in empathic communication skills and fostering social support., Significance of Results: Our communication skills training shows promise in supporting caregivers' skills and confidence in engaging in ACP discussions with patients and healthcare providers. A future randomized controlled trial with a larger and more diverse caregiving sample is needed to determine training efficacy.

Caregivers of patients with glioblastoma multiforme (GBM) are at significant risk for existential distress. Such distress negatively impacts caregivers' quality of life and capacity to serve in their role as healthcare proxies, and ultimately, contributes to poor bereavement outcomes. Our team developed Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers. The purpose of this study was to evaluate the feasibility, acceptability, and preliminary effects of MCP-C among caregivers of patients with GBM via a mixed-method pilot trial. Caregivers were randomized to seven sessions of MCP-C or Enhanced Usual Care (EUC), which included distress screening and the provision of targeted referrals and completed quantitative assessments at baseline (T1), after completion of MCP-C (T2), and at 2-month follow-up (T3). A subset of participants engaged in semistructured interviews at T2. Of 60 caregivers randomized, 55 were evaluable for preliminary efficacy analysis. Constrained linear mixed models indicated the MCP-C arm had statistically significant improvement relative to the EUC arm in the primary outcome of personal meaning and multiple secondary outcomes, including benefit finding, depressive symptomatology, and spiritual wellbeing. MCP-C demonstrated preliminary efficacy in facilitating caregivers' capacity to experience a sense of meaning and purpose despite the challenges and suffering associated with providing care to patients with GBM. Future studies are needed among more diverse samples of caregivers and should include the opportunity for concurrent patient enrollment to allow for a reciprocal and augmented experience of meaning among patient-caregiver dyads., (© Society of Behavioral Medicine 2022. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking., Objective: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training., Methods: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree)., Results: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72)., Conclusions: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes., (©Carma L Bylund, Easton N Wollney, Gemme Campbell-Salome, Allison J Applebaum, Samantha R Paige, Kennan DeGruccio, Elisa Weiss, Maria Sae-Hau, Jason Arnold, Domenic Durante, Tithi B Amin, Chelsea N Hampton, Carla L Fisher. Originally published in JMIR Cancer (https://cancer.jmir.org), 05.07.2022.)

Objective: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS)., Method: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI)., Results: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (β = -0.11, p < 0.001), as well as cancer openness and avoidance (β = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (β = 0.08, p < 0.01) and SS (β = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (β = 0.71, p < 0.05)., Conclusions: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations., (© 2022 John Wiley & Sons Ltd.)

COVID-19 has unveiled and amplified the burnout, grief, and other forms of distress among healthcare providers (HCPs) that long preceded the pandemic. The suffering of the healthcare workforce cannot be simply and sufficiently addressed with a single psychotherapeutic intervention. Nevertheless, the National Academies of Sciences, Engineering, and Medicine Studies recommended prioritizing interventions that generate an increased sense of meaning in life and in work to reduce burnout and cultivate clinician wellbeing. Despite their guidance, there is a dearth of interventions for HCPs specifically targeting meaning and purpose as an avenue to reduce HCP distress. In a time when such an intervention has never been more essential, Meaning-Centered Pyschotherapy (MCP), a brief, evidence-based intervention designed for patients with advanced cancer may be key. This piece describes the principles underlying MCP and how it might be adapted and applied to ameliorate burnout among HCPs while providing a rationale to support future empirical studies in this area. Importantly, the systemic factors that contribute to the emotional and mental health burdens of HCPs are discussed, emphasizing the need for systems-level changes that are needed to leverage the potential outcomes of MCP for HCPs.

Objective: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022., Methods: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses., Results: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines., Significance of Results: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

Purpose: Glioblastoma (GBM) is a devastating neuro-oncologic disease with invariably poor prognosis. Despite this, research shows patients have unrealistic perceptions of their prognosis, which may relate in part to communication patterns between patients, caregivers and oncologists. The purpose of this study was to examine communication processes and goals among patients, caregivers, and oncologists to elucidate drivers of prognostic understanding (PU) in the context of recurrent GBM., Methods: This was a prospective, multi-center study enrolling adult patients with GBM, caregivers, and oncologists, who independently reported the content of a specific discussion involving the disclosure of GBM recurrence. Communication processes and goals were characterized for each participant, and concordance between all dyads and patient-caregiver-oncologist triads were calculated., Results: Seventeen patient, caregiver, and oncologist triads were analyzed. At the individual level, three (17.6%) patients and 8 (47.1%) caregivers reported having discussed prognosis during the clinical encounter, as compared to ten oncologists (58.8%). Seven patients (41.2%) and 5 caregivers (29.4%), versus thirteen oncologists (76.5%) reported ever discussing prognosis or life expectancy at previous appointments. Generally, patient-caregiver concordance (i.e., both answered the same) regarding communication goals and processes was low. Triads showed limited concordant responses in discussing curability (n = 5), prognosis (n = 4), end-of-life treatment goals (n = 4), and ever discussing prognosis (n = 3)., Conclusion: Patients, caregivers and oncologists had discordant views regarding communication processes and prognostic goals, even when recalling a single discussion. This study highlights the importance of clear and frequent communication about prognosis, and the need for further research on communication and PU in the neuro-oncology setting., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Depression and anxiety are common and associated with inflammation in patients with cancer. Inflammatory indices such as albumin and neutrophil-to-lymphocyte ratio (NLR) obtained from metabolic panels and complete blood counts should be available for mental health professionals treating anxiety and depression at cancer centers. We hypothesized that albumin and NLR extrapolated from non-mental health oncology appointments would be associated with anxiety and depression and drawn close enough to psychiatry visits to be useful for the psycho-oncologist. MATERIALS & METHODS: Depression and anxiety were evaluated in patients (n = 97) referred to a cancer center psychiatric service for depression using the Patient Health Questionnaire-9 and General Anxiety Disorder-7. Albumin concentration and NLR were assessed for timing and correlation strength with anxiety and depression by setting (localized/metastatic cancer)., Results: Most patients (96%) had albumin or NLR available at any time point of which 45% were drawn within one week of the psychiatric appointment. No significant correlations were noted when evaluating localized cancer or NLR exclusively. For patients with metastatic cancer, anxiety and depression were correlated with albumin at any time point (r = -0.28, p < 0.05; r = -0.40, p < 0.01, respectively) and within a week of psychiatry appointment (r = -0.40, p < 0.05; r = -0.68, p < 0.001, respectively). Albumin evaluated within a week predicted 32% of depression score variance (β = -0.63, p = 0.002). Hypoalbuminemia (<3.8 g/ul) was associated with anxiety (χ2 = 4.43, p = 0.04) and depression (χ2 = 11.06, p = 0.001)., Conclusion: Hypoalbuminemia in patients with metastatic cancer may help establish the presence or persistence of anxiety, depression, treatment refractoriness, and the use of inflammation in cancer-related psychological symptom management., (© 2022 John Wiley & Sons Ltd.)

Background: Cancer survivors are prone to insomnia due to the physical and psychological sequelae of cancer and treatment. Individuals with insomnia may present symptoms of hyperarousal. Cancer survivors with insomnia and trait hyperarousal may require different clinical treatments than patients with insomnia without trait hyperarousal. To our knowledge, no study has examined these factors previously. This study examined the relation between insomnia and trait hyperarousal in cancer survivors., Methods: The sample included 160 individuals with previous cancer diagnoses who met DSM-5 criteria for insomnia disorder. Measures were collected with cross-sectional batteries of questionnaires, including the Insomnia Severity Index (ISI) and Hyperarousal Scale (HAS). This study is based on baseline data collected in a randomized clinical trial comparing CBT-I to acupuncture for cancer survivors with insomnia (Garland, Gehrman, Barg, Xie, & Mao, 2016)., Results: Hyperarousal was positively associated with insomnia (ISI total score) in bivariate correlations (r = .350, p < .01) and linear regressions (F = 22.06, p < .001). In bivariate correlations, hyperarousal was related to perceptions about the consequences of disturbed sleep rather than reported sleep patterns. For example, hyperarousal was positively related to reported satisfaction (r = .159, p < .05) and worry about sleep (r = .415, p < .01), but not to falling asleep, staying asleep, or awakening too early. In regressions, younger age, insomnia duration, and worry about sleep were uniquely associated with hyperarousal when adjusting for insomnia (B = 0.200, B = 0.177, B = -0.182, p < .05)., Conclusions: Hyperarousal is associated with psychological appraisal of insomnia rather than reported sleep pattern. Younger age and longer duration of insomnia are associated with trait hyperarousal. These findings suggest targeting trait hyperarousal with amplified psychological treatment may lead to more personalized, effective treatment for insomnia., (© 2021. International Society of Behavioral Medicine.)

Background/aims: Many cancer survivors who received intensive treatment such as hematopoietic stem cell transplantation (HCT) experience posttraumatic stress disorder (PTSD) symptoms. PTSD is associated with lower quality of life and other symptoms that require clinical treatment. The iterative treatment decisions that happen in clinical practice are not adequately represented in traditional randomized controlled trials (RCT) of PTSD treatments. The proposed stepped-care SMART design allows for evaluation of initial response to the Cancer Distress Coach mobile app; adaptive stepped-care interventions; and precision treatment strategies that tailor treatment selection to patient characteristics., Methods/design: HCT survivors (N = 400) reporting PTSD symptoms are being recruited at two cancer centers and randomly assigned to: 1) Cancer Distress Coach app or 2) Usual Care. The app includes educational and cognitive behavioral therapy (CBT)-based activities. Four weeks post-randomization, participants re-rate their PTSD symptoms and, based on intervention response, non-responders are re-randomized to receive video-conferenced sessions with a therapist: 3) coaching sessions in using the mobile app; or 4) CBT specific to HCT survivors. Participants complete outcome measures of PTSD, depression, and anxiety after Months 1, 3, and 6. Participant characteristics moderating intervention responses will be examined., Conclusions: This novel adaptive trial design will afford evidence that furthers knowledge about optimizing PTSD interventions for HCT survivors. To our knowledge, this study is the first SMART design evaluating PTSD symptom management in cancer survivors. If successful, it could be used to optimize treatment among a range of cancer and other trauma survivors., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Objective: Posttraumatic growth and benefit finding describe the potential for positive changes resulting from traumatic experiences, including cancer. In oncology, these constructs are increasingly examined concurrently using the Posttraumatic Growth Inventory (PTGI) and the Benefit Finding Scale (BFS). However, distinctions between these constructs and their corresponding scales are not altogether clear, and the burden of administering 2 lengthy questionnaires is evident, particularly for patients at end-of-life., Method: Baseline data from 209 participants enrolled in a randomized controlled trial evaluating the efficacy of a psychosocial intervention were analyzed. We assessed the structure and covariance of all PTGI and BFS items using item response theory to determine the extent to which these measures overlap and the potential value of their concurrent administration in patients with advanced cancer., Results: Despite conceptual differences in posttraumatic growth and benefit finding, results indicated that these measures address the same underlying construct. We subsequently analyzed 3 abbreviated scales (7, 11, and 16 items) that combine items from both scales to identify an optimal briefer combined scale. Results supported all 3 versions, with the 7- and 16-item measures appearing to have the best balance of content and concurrent validity and the 11-item version optimizing information gained with brevity., Conclusions: These findings indicate that concurrent administration of the PTGI and BFS may be unnecessary given the high degree of overlap between these 2 measures and that a brief subset of items may adequately evaluate positive change among patients with advanced cancer while reducing participant burden. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

Background: Being an informal caregiver (IC) of a cancer patient is often associated with psychological distress. We have recently, in a randomized controlled trial (RCT), demonstrated efficacy of Emotion Regulation Therapy for ICs (ERT-C), evidenced as lower levels of psychological distress. Such efficacy demonstration is important, but a crucial step in improving treatments for the IC population is the identification of moderators (i.e., for whom the treatment works) and mediators (i.e., the drivers of the detected effect)., Material and Methods: In a sample of 65 psychologically distressed ICs (combining participants who received immediate and delayed treatment in the RCT); we investigated age, gender, and homework completion as moderators of treatment outcome. Proposed mediators were derived from the ERT model and included mindfulness, emotion regulation dysfunction, decentering, and cognitive reappraisal., Results and Conclusions: The strongest moderation effect was found for homework completion, predicting improvements on psychological distress. Correlational mediation analyses generally supported the ERT model. However, temporal precedence was only established for the association between decentering and worry, where a bidirectional relation was revealed. Homework thus emerged as an important aspect of ERT-C and, albeit a bidirectional relationship, changes in decentering may precede changes in worry. Future trials should ensure the robustness of these results, hone the specificity of process measures, and further investigate the causal timeline of change.

Objective: Previous work in Huntington's disease (HD) has shown that a sense of meaning and purpose (M&P) is positively associated with positive affect and well-being (PAW); however, it was unknown whether HD-validated patient-reported outcomes (PROs) influence this association and how M&P impacts PROs in the future. Our study was designed to examine if HD-validated PROs moderate the relationship between M&P and PAW and to evaluate if baseline M&P predicts 12- and 24-month changes in HD-validated PROs., Methods: This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (n = 50 prodromal, n = 171 early-stage manifest, and n = 101 late-stage manifest HD). A single, multivariate linear mixed-effects model was performed with PAW as the outcome predicted by main effects for M&P and several moderators (i.e., an HD-validated PRO) and interactions between M&P and a given PRO. Linear-mixed models were also used to assess if baseline M&P predicted HD-validated PROs at 12 and 24 months., Results: Higher M&P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD-validated PROs, and independent of disease stage. In our primary analysis, baseline M&P predicted increased PAW and decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages., Interpretation: These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions., (© 2021 The Authors. Annals of Clinical and Translational Neurology published by Wiley Periodicals LLC on behalf of American Neurological Association.)

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers' uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers' experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers' needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes., (© Society of Behavioral Medicine 2021. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Providing informal care for a relative or friend with medical or mental needs can extol a physical burden on the caregiver, including impaired aspects of sleep quality such as suboptimal sleep duration, lengthened sleep latency, frequent awakenings, daytime sleepiness, and poor self-rated sleep quality. Diminished sleep quality can worsen the health in the caregiver, including dysregulation of hypothalamic-pituitary-adrenal axis (HPA) activity. Few studies have attempted to describe sleep in young adults who provide regular informal care. This study examines subjective and objective indicators of sleep quality and diurnal cortisol rhythms among young adult caregivers relative to non-caregiving peers. We expect that caregivers will exhibit poorer objective and subjective sleep quality and greater dysregulation in diurnal cortisol indices, than demographically similar non-caregivers, and that caregivers with poorer sleep will exhibit pronounced cortisol dysregulation., Methods: Participant self-reported sleep quality over the prior month via the Pittsburgh Sleep Quality Index and objective sleep quality was observed via wrist actigraph for three consecutive days. Diurnal salivary cortisol was also measured across the three days of actigraph monitoring., Results: Informal caregivers exhibited more self-reported sleep disturbance and greater sleep latency than non-caregivers, as well as more objectively measured sleep fragmentation. Caregivers with a shorter sleep duration were observed to have flatter diurnal cortisol slopes than caregivers with a relatively longer sleep duration., Conclusions: Young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health through HPA axis dysregulation. Longitudinal research is needed to identify these relationships across time.

Context: Accurate prognostic understanding is associated with increased advance care planning, symptom control, and patient autonomy in oncology. The impact of prognostic understanding on patients' health information preferences (HIPs) and prognostic information preferences is unknown and has important implications for health care communication., Objectives: The present study characterized the HIPs of patients with advanced cancer; examined differences in HIPs between patients with varying curability beliefs; and identified differences in the characteristics and psychological well-being of patients with varying curability beliefs., Methods: This cross-sectional study used a secondary data analysis of baseline data (prerandomization) for patients enrolled in a large randomized controlled psychotherapy trial. 206 participants were recruited from outpatient clinics at a single facility. Inclusion criteria included: 18 years and older; English speaking, Stage IV solid tumor cancer, and Distress Thermometer score of ≥4., Results: Most participants preferred as many details as possible about their diagnosis and treatment (69.4%; n = 143), and the likely outcome of their disease (72.3%; n = 149). Most participants accurately described their cancer as unlikely curable or incurable (62.6%; n = 129). There were no significant differences in HIPs based on level of prognostic understanding. Poorer prognostic understanding was associated with religiosity and better quality of life and existential well-being., Conclusion: In the present study, prognostic understanding (i.e., curability beliefs) was not associated with HIPs. Therefore, oncology clinicians must individually and interatively evaluate patients' interest and preferences for receiving information. Future research should further clarify preferences for the framing and content of prognostic information from providers and improve the measurement of prognostic understanding to facilitate patient-centered end-of-life care., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Individuals with life-limiting illnesses experience psychotherapeutic benefits of transmitting their life's history to loved ones; however, the scope and depth of what warrants preservation and who ought to undertake such activity remains less clear. Furthermore, individuals with conditions that afflict the brain face barriers regarding the timing and structure of such interventions. We analyzed data from an online social media forum to understand perceptions of legacy-making. Methods: This is a qualitative descriptive study of Slashdot, a social media website with a focus on science, technology, and politics. In August 2010, a Slashdot user inquired about a loved one with a life-limiting illness and asked for opinions on how to preserve the individual's memories. We conducted a content analysis of the individual comments related to digital legacy-making to identify common themes. Results: Slashdot users contributed 527 replies to the initial inquiry. Users often included bereaved individuals who offered input on the need to preserve information about a loved one, the modalities in which to preserve, and what type of content to preserve. Three key themes emerged related to legacy-making: (1) capture the individual's essence and avoid the minutia, (2) live for now to avoid prolonged suffering, and (3) recognize the equal benefits to all who memorialize. Conclusions: Users in a social media forum articulated the value of capturing their loved ones' essence for posterity, which many believed would help them to avoid prolonged grief. These findings have implications for the development and timing of personalized psychosocial interventions as well as informing application development of evidence-based digital legacy systems., Competing Interests: Financial disclosures related to research covered in this article: The authors report no conflicts of interest related to research covered in this article. Funds associated with the processing of this article are from Dr. Sokol's Northwestern's Physician-Scientist Training Program in Neurology. Dr. Sokol serves as an ad hoc consultant for Tikvah for Parkinson and receives funds from Northwestern's Physician-Scientist Training Program in Neurology. He is an ad hoc reviewer for Pilot and Feasibility Studies and Palliative Medicine Reports. Dr. Hauser is supported or has received support from the Coleman Foundation, University of Florida, National Cancer Institute, American Academy of Hospice and Palliative Medicine, Arnold P. Gold Foundation, National Institute on Aging, Seasons Hospice Foundation, Woodstock, HCSC Insurance Services Company, National Heart, Lung, and Blood Institute, Canadian Patient Safety Institute, Health Research and Educational Trust, Icahn School of Medicine at Mount Sinai, Centers for Medicare & Medicaid Services, Agency for Health care Research and Quality, Children's Hospitals and Clinics of Minnesota, Department of Veterans Affairs, National Center for Research Resources, NOVA Research Company, National Cancer Institute, Lance Armstrong Foundation, Retirement Research Foundation, Society for the Arts in Health care, Medical College of Wisconsin, and the National Institute of Nursing Research. Ms. Jordan, Dr. Applebaum, Dr. Cerf, and Dr. Forlizzi have no relevant disclosures., (© Leonard L. Sokol et al., 2020; Published by Mary Ann Liebert, Inc.)