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Social relationships have been shown to predict decreased risk for morbidity and mortality. However, the more precise processes underlying these associations are in need of exploration. In this study, we examined important provider (relationship quality) and recipient-related (support expectations) factors that might influence the effectiveness of receiving support on cardiovascular reactivity (CVR). Participants discussed a stressful event with either a supportive or ambivalent friend, and were either given instructions that included an explicit expectation of support provision or no expectation during the task. Behavioral coding revealed fewer emotionally supportive behaviors and marginally more negative behaviors from ambivalent friends. Receiving support from an ambivalent friend was also associated with higher systolic blood pressure reactivity compared to a supportive friend, but had no effects on diastolic blood pressure or heart rate; nor were there any significant statistical interactions with the expectation manipulation. Overall, support expectations had little influence on cardiovascular and behavioral responses. Implications for the study of received support and health are discussed along with potential mechanisms responsible for such links. [ABSTRACT FROM AUTHOR]

The aim of this study was to assess whether a diagnosis of concussion given at a Veterans Healthcare Administration secondary traumatic brain injury assessment impacted either posttraumatic stress disorder (PTSD) symptomatology or other variables at the time veterans sought treatment for PTSD. This retrospective study compared 61 male veterans with a history of military-related concussion and military-related PTSD to 83 male veterans with military-related PTSD but without a diagnosis of military-related concussion. There were no significant between-group differences in PTSD symptomatology. However, the cohort with a history of military concussion endorsed decreased ability to cope with PTSD symptoms, increased problems with physical health, and more pain complaints. If replicated, these results may guide the design of more effective interventions for veterans who receive diagnoses of PTSD and concussion. [ABSTRACT FROM AUTHOR]

Background: While telehealth may offer promise for accessible, efficient palliative care delivery, leveraging telehealth technologies as an opportunity to better understand and advance the science of palliative care communication has been less well explored. Without identifying solutions to overcome challenges to conducting research in the virtual environment, we are unable to conduct the foundational work to offer evidence-based recommendations for high-quality telehealth, particularly in the context of palliative care. Our objective is to highlight methodological challenges in the use of telehealth for the study of palliative care communication and share lessons learned from using these methods., Methods: This paper is the result of a reflective process and experience across three ongoing observational communication research studies focused on the use of telehealth during serious illness. These research datasets have been collected from multiple sites and represent rural and urban telehealth palliative care consultations for patients receiving dialysis (n = 34), patients with cancer (n = 13), and seriously ill, home-bound patients (n = 9). We illustrate challenges, insights, and recommendations with case studies from these studies., Results: We identify key challenges, and offer recommendations to address them, in telehealth palliative care communication research. Key insights fall within three themes: 1) addressing accessibility barriers to enrollment in telehealth research; 2) technical considerations regarding how software and hardware choices have implications for data collection and analysis; and 3) ethical considerations regarding the nuances of consent and privacy in telehealth encounters., Conclusions: Overall, our approach demonstrates possibilities for the use of telehealth to study palliative care communication and provides a "how-to" example for unique telehealth considerations from data collection through analysis. These strategies can facilitate success with large-scale health communication research studies in the telehealth context., Competing Interests: Declarations. Ethics approval and consent to participate: All patients provided informed consent for participation in the original studies used as exemplars in this manuscript. Studies were approved by the following IRBs: The University of Vermont (Study 1), the Dana-Farber Cancer Institute (Study 2), Maine Medical Center and Vermont Medical Center (Study 3). Ethical considerations followed the research ethical rules presented in the Declaration of Helsinki. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2025. The Author(s).)

Background/purpose: Immunotherapies, such as CAR-T, have revolutionized cancer treatment for some cancers. However, these treatments often require active participation of a family member or friend to act as a caregiver at home for several weeks after infusion. Given the novelty of CAR-T, there is a need to better understand the experience of patients receiving these treatments and their caregivers., Methods: As part of a larger study, patients receiving CAR-T and their caregivers were recruited to participate in semi-structured interviews about their experiences in treatment within a week of hospital discharge. Guided by the Dyadic Cancer Outcomes framework and using an inductive approach, trained coders qualitatively analyzed interview transcripts to identify key themes., Results: Ten patients and nine of their caregivers participated in interviews in 2021. Three key themes surrounding CAR-T experiences were identified: individual, relational, and contextual. Firstly, the CAR-T experience impacted physical and psychosocial aspects of life for patients and caregivers. Secondly, the isolating and intensive nature of caregiving after discharge affected relationships between patients and caregivers. Thirdly, social contexts such as food, housing, and travel costs complicated the treatment experience., Conclusions: Although CAR-T is a novel treatment, the experiences of patients and especially caregivers are often similar to those receiving other forms of cancer treatment. However, due to the requirement of a constantly-present caregiver in the weeks after therapy, these experiences may have been intensified. Future work is needed to develop inclusive, family-centered programs to help support patients and their caregivers through cancer treatments.

Context/objectives: Establishing human connection is critical during serious illness conversations, however the sensory and relational environment of telehealth may require innovative communication practices for clinicians, patients, and families to do so effectively. We sought to explore if and how recommended in-person best practices for establishing human connection are adapted to the telehealth palliative care (telePC) setting, to enable discovery and description of practice innovations in this new care environment., Methods: We analyzed data from the Northern New England Palliative Care TeleConsult Research Study - a formative mixed-methods pilot study at two academic medical centers in rural US states with patients with serious illness (2019-2020). We used a qualitative descriptive approach paired with directed content analysis to analyze video-recorded telePC consultations., Results: Nine video-recorded telePC consultations were analyzed including 9 patients and 6 palliative care clinicians. Patient-participants had a mean age of 68 years, 56 % were women, and 38 % did not complete high school. Mean consultation duration was 52 min (standard deviation 10, range 40-70 min). Our qualitative analysis of visits resulted in three key themes describing clinician communication: 1) Practices for fostering human connection; 2) Practices for overcoming technical problems/difficulties; and 3) Practices for engaging in multi-participant tele-conversations., Conclusion: Our study findings help to provide proof-of-concept evidence that clinicians can use recommended in-person connection-building communication practices in telePC. As palliative care clinicians naturally adapt to telehealth environments, more empirical research is needed to understand which innovative approaches most effectively foster human connection., Innovation: TelePC represents an expanding, yet understudied, mode of palliative care delivery. This study is among the first to describe how the telePC context is catalyzing naturally-occurring communication innovations., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2025 The Authors.)

Background: Pediatric cancer disrupts the lives of siblings in many ways, including physical separations from family and friends that increase risk for distress. Research suggests that siblings use technology and social media to connect with friends and family and seek social support and interaction. However, this may expose siblings to negative online experiences that can erode self-esteem, reducing resilience., Objective: This study explored the relationship between online experiences, internet-fostered connection, resilience, and psychosocial health among siblings of children with cancer., Methods: Participants included adolescent siblings (N = 81; aged 12-17 years) of children with cancer. Most were female (56.8%), and 50.6% represented racially or ethnically minoritized groups. Online experiences, social media use, resilience, and psychosocial health were self-reported and analyzed using structural equation modeling., Results: A majority of siblings reported moderate to severe posttraumatic stress symptoms (PTSSs) (59%) and elevated emotional and behavioral difficulties (EBDs) (53%). Experiencing more positive online experiences was associated with greater perceived connection to family and friends online, but not resilience, PTSSs, or EBDs. In contrast, higher negative online experience scores were significantly associated with more PTSSs and EBDs. In addition, the association between negative online experiences and EBDs was significantly mediated by a negative association between negative online experiences and resilience., Conclusions: Although social media may be a valuable tool for helping siblings of children with cancer garner social support, negative online experiences may be detrimental to their adjustment., Implications for Practice: Efforts should be made to preserve and foster resilience among siblings who use social media for support., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Objective: Caregivers play crucial roles in cancer treatment and outcomes. However, little is known regarding how caregivers support patients during cancer clinical trials. The aim of this study was to gain insight into the caregiver experience of rural and urban patients enrolled in cancer clinical trials., Methods: As part of a quality improvement study, 21 patient-caregiver dyads were interviewed using closed and open-ended interview questions. We analyzed quantitative and qualitative data on patient and caregiver perceptions of caregiver contributions and explored differences in the reported caregiving experience between rural and urban participants., Results: While patient-caregiver dyads showed significant disagreement in the symptoms/medication management domain, with caregivers tending to acknowledge the contribution while patients did not (χ 2 (1, 21) = 5.82, p = 0.016), both groups generally showed agreement in their perceptions of caregiver involvement and reported similar levels of involvement across the other six assessed domains. Qualitative analysis revealed three themes: patient independence, invisible support, and accepted forms of support. Despite patients valuing independence, patients benefited from caregivers' unseen support, and providing emotional support and attending appointments were widely accepted forms of support among patients. No meaningful differences in caregiver contributions were found between rural and urban patient-caregiver dyads., Conclusion: Our study revealed that caregivers are assisting patients in often unseen and underestimated ways during cancer clinical trials, highlighting their multifaceted role. Cancer clinical trials should implement a family-centered approach, especially for rural caregivers, to enhance patient retention and outcomes., (© 2025 The Author(s). Cancer Medicine published by John Wiley & Sons Ltd.)

Context: Timely and transparent serious illness conversations (SIC) between family caregivers and patients facilitate high-quality end-of-life care and patients' and family caregivers' mental wellbeing, but frequently do not occur, happen too late, or are incomplete. While social relations and roles shape communication, few studies explore their influence on patient-caregiver SICs., Objectives: Investigate how the parent-child relation and roles shape SICs between cancer patients and their adult-child caregivers (ACC), the largest caregiver population., Methods: Qualitative interviews were conducted with 47 participants: advanced cancer patients (n = 16), their ACCs (n = 23), and bereaved ACCs (n = 8). Interviews were transcribed and analyzed using a theoretical thematic approach., Results: Respondents' experiences with SICs centered on three key themes: (1) the parent role could hinder SICs in an attempt to protect their ACC while expectations to prepare one's child promoted SICs; (2) adult-children's busy life phase (e.g., marriage, children, career) hampered their prognostic awareness and added emotional weight to parent-child SICs; and (3) the child role dictated expectations for SICs and amplified distress when ACCs felt they were expected to engage in SICs in ways concordant with another role (e.g., patient's spouse or nurse)., Conclusion: The fundamental rebalancing of the parent-child relation and roles when an adult-child cares for their parent creates unique challenges for patients and their ACC to discuss and plan for end-of-life. To encourage timely, effective SICs, clinicians and caregiver services in and outside the clinic need awareness and guidance on how goals of care conversations must incorporate family caregivers' and patients' familial role expectations., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Caregivers are engaging in recreational travel with the neuro-oncology patients they care for, yet there is little scientific research on this phenomenon. Aim: The purpose of this study is to examine the experiences of recreational travel among caregiver-patient with brain cancer dyads from the perspective of the caregivers. Specifically, we examined (1) context (i.e., why and when) of recreational travel, (2) the caregiver's travel preparations, and (3) the impact of the travel on caregivers. Design: Descriptive thematic analysis was conducted on transcripts of unprompted caregiver discussion of recreational travel, defined as any trip or vacation taken by caregiver and patient with the purpose of recreation lasting at least overnight. Setting/Participants: Caregivers of patients with brain cancer enrolled in an eight-week support intervention at an NCI-designated Cancer Center (NCT04268979). Incidental discussion of recreational travel during weekly phone intervention sessions was identified from structured interventionist notes. Results: Fifteen caregivers discussed recreational travel. The context of travel was often to focus on quality of life upon treatment cycle completion. Preparation often included accommodating patients' needs. Care teams' practical support and validation for the trip were identified as useful resources. Caregivers most often described the emotional impact of travel, which was often complex and bittersweet. Conclusions: Travel with a patient with brain cancer may be an important goal for caregivers and could help create meaning and memories, but can also present challenges. Early and clear communication from the care team can play a role in supporting meaningful trips.

Background: There has been limited study of oncology professionals' perspectives on optimizing delivery of presurgical education for individuals with head and neck cancer (HNC). Therefore, we assessed oncology professionals' perspectives about presurgical education for laryngectomy and free flap surgeries, which have a significant impact on patients' quality of life., Methods: Interviews were conducted with 27 oncology professionals from an NCI-designated Comprehensive Cancer Center and a community oncology setting., Results: Participants identified six recommendations to improve presurgical education: (1) establishing preoperative consultations with allied health professionals; (2) educating patients and providers on the concept of team-based care; (3) optimizing education through multimodal strategies; (4) connecting patients with other HNC surgical patients; (5) preparing caregivers for their role; and (6) educating patients on insurance navigation., Conclusions: Study findings demonstrate gaps in the timing, content, and mode of delivery for presurgical education and suggest strategies for further evaluation in future studies., (© 2024 Wiley Periodicals LLC.)

Introduction: Rural cancer caregivers experience obstacles in accessing services, obtaining respite, and ensuring their care recipients receive quality care. These challenges warrant opportunities to participate in evidence-based behavioral intervention trials to fill support gaps. Adaptation to rural settings can facilitate appropriate fit, given higher caregiver service needs and unique challenges. We present findings from the adaptation process of a psychoeducational intervention designed to support cancer caregivers in rural settings., Methods: We adapted Reblin's CARING intervention, designed for neuro-oncology, to target caregivers of rural cancer patients across cancer sites. First, we conducted formative work to determine the unmet social and supportive care needs rural cancer caregivers faced. We used the Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies (FRAME-IS) to guide the modifications. To conduct the adaptation, we elicited feedback through qualitative interviews of seven caregivers and three cancer hospital staff and thematic analysis to inform intervention modifications. Our qualitative study was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ)., Results: Interviews revealed that service access was a pressing need, along with financial (e.g., treatment costs, employment challenges) and geographic barriers (e.g., distance to treatment, road conditions). We modified content, training, and context using the FRAME-IS steps. Changes enhanced fit through the following adaptations: changes to social support domains, session content, interventionist training, resource offerings, screening and recruitment processes, and virtual delivery., Discussion: Challenges to establishing successful psychosocial oncology interventions may be improved through participant-centered approaches and implementation science. Additional systemic challenges, including lack of systematic documentation of caregivers, persist and may especially disadvantage under-represented and underserved groups, such as rural dwellers. The enCompass intervention is undergoing ongoing single-arm pilot of rural cancer patient/caregiver dyads targeting caregiver coping self-efficacy and patient/caregiver distress (Clinical Trials #NCT05828927)., (UTF‐8.)

Background: Despite the key role family caregivers play in the US healthcare system, they are not systematically identified and tracked, limiting our knowledge about this important group. Objective: Our objective was to identify caregiver characteristics and barriers to service delivery in a primarily rural state. Methods: As part of a quality improvement project, a cross-sectional online survey was fielded in clinical and community settings. Participants included 85 self-identified adult caregivers of another adult with an illness, condition, or disability from within a US state healthcare network. Descriptive analyses were conducted, and inferential statistics were used to compare urban versus rural respondents and older versus younger respondents. Results: Caregivers were responsible for a wide range of care activities and particularly older caregivers spent a significant amount of time providing care. Older caregivers also reported significantly lower levels of burden compared to younger caregivers, yet both groups had clinically high levels on average. Caregivers reported receiving helpful emotional support, but needed more tangible support and were limited by availability and cost. Conclusions: There is a need to fund comprehensive caregiver programing and address caregivers' own social and physical health needs to reduce caregiver burden., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

Objective: Delayed transitions from pediatric to adult primary care leads to gaps in medical care. State all-payer claims data was used to assess multilevel factors associated with timely transition from pediatric to adult primary care., Materials and Methods: We created a cohort of 4,320 patients aged 17-20 in 2014-2017 continuously enrolled in health insurance 36 months between 2014 and 2019 and attributed to a pediatric provider in months 1-12. We also constructed primary care provider networks identifying links between providers who saw members of the same family. Logistic regression was used to predict adult primary care in months 25-36 on family, provider, and county-level factors. Finally, we modeled the effect of county and network cluster membership on care transitions., Results: Male sex, having another family member seeing a pediatrician, and residing in a county with high pediatric care capacity or low adult primary care capacity were associated with lower odds of adult primary care transition., Discussion: We investigated factors associated with successful transitions from pediatric to adult primary care. Family ties to a pediatrician and robust county capacity to provide primary care to children were associated with non-transition to adult primary care., Conclusion: Multiple level factors contribute to non-transition to adult primary care. Understanding the factors associated with appropriate transition can help inform state and national policy., (© 2024. The Author(s).)

Background: Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods., Methods: Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed "essential elements" of brain cancer PC services., Results: We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients' unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services., Conclusions: The brain tumor community calls for research testing PC service models for patients that incorporate the "essential elements" of palliative care., Competing Interests: LS reports a speaking honorarium from Medscape. All other authors report no conflict of interest., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. 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.)

Objective: Our goal was to identify specific types of services desired by caregivers and determine subgroups most interested in each service type., Methods: Caregiving questions were added to a state-wide poll conducted in a majority-rural state. Those who identified as caregivers ( n  = 428) were asked to report on the helpfulness of 6 domains of services. Descriptive analysis and logistic regressions were conducted., Results: Top resources caregivers identified as potentially helpful included hands-on services (33.9%), help coordinating care from multiple providers (21.5%), help with finances (18.9%), and help managing emotional stress (17.8%). Only 15% indicated no caregiver resources would be helpful. Younger caregivers endorsed several service domains as more helpful than older caregivers; caregivers reporting higher stress were more likely to endorse most domains as helpful., Conclusion: Data reinforces the overwhelming need to offer caregiver services. Navigation and integrated and tailored service models may be beneficial to help caregivers identify and access appropriate services within healthcare systems., Innovation: This study uses an innovative approach to identifying needs of caregivers, who are often invisible within the healthcare system. Our findings suggest a paradigm shift is needed to broaden the scope and depth of services offered to caregivers., Competing Interests: The authors declare that they have no conflicts of interest., (© 2024 The Authors.)

Background and Objectives: Only a fraction of the 53 million caregivers in the United States use available formal community services. This scoping review synthesized the literature on the barriers and facilitators of community support service utilization by adult caregivers of a family member or friend with an illness, disability, or other limitation., Research Design and Methods: We searched PubMed, CINAHL, PsycInfo, and Web of Science for quantitative and qualitative articles assessing barriers and facilitators of caregivers' access to and utilization of resources, following Preferred Reporting Items for Systematic Review and Meta-Analysis scoping review guidelines. Thematic analysis, drawing on an initial conceptualization, informed key insights around caregivers' resource navigation process., Results: The review provides support for individual factors affecting service use. Notably, some factors-such as time restrictions and increased caregiving demands-appear to function as barriers to accessing services even as they increase caregivers' need for support. Additionally, contextual barriers including cultural factors and support of friends/family can affect caregivers' access to resources. Finally, experience with health systems and structures and the intersection with other factors can affect service utilization., Discussion and Implications: Suboptimal access to and utilization of community support services can be addressed at both the person and system level to mitigate potential inequities. Ensuring that caregivers are aware of, eligible for, and have the capacity and support to access the appropriate resources at the right time is essential for improving caregiver outcomes, reducing burnout, and supporting continued care., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: Antibiotic use and misuse are common in pregnant women and young children. Few studies have assessed real-world discussions of antibiotics in these populations. Using social media posts of pregnant women and parents, our goal was to identify key themes about facilitators and barriers to appropriate antibiotic usage., Methods: A purposive sample of public posts and comments relevant to antibiotic use was collected from the BabyCenter United States social media site. Using a directed content analysis, themes related to facilitators and barriers to appropriate antibiotic use were identified., Results: Seven hundred and twenty-six posts and 5227 comments were analysed. Themes centred around individual factors, interpersonal factors, and structural factors. Individual factors included knowledge and beliefs. Though misinformation was present, most parents were aware of appropriate antibiotic usage and perceived antibiotics as safe and effective. Some hesitance around using antibiotics led to recommendations for home remedies or over-the-counter treatments. Interpersonal factors focused on a lack of available offline peer support, the expertise of providers, as well as a potential lack of attention from those providers. Structural factors, including access to care, also impacted parents' antibiotic use and misuse., Conclusion: Though most parents demonstrated appropriate knowledge about antibiotics and a willingness to follow guidelines, negative experiences with their providers, a lack of support from peers, and structural factors presented as potential barriers to appropriate antibiotic use. Implementing avenues for peer support for parents, allowing more time for providers to address parents' concerns, and improving access to providers could improve appropriate antibiotic use in parents., (© The Author(s) 2023. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: This study aimed to test the feasibility and acceptability of a digital health promotion intervention for family caregivers of patients with advanced colorectal cancer and explore the intervention's preliminary efficacy for mitigating the impact of caregiving on health and well-being., Methods: We conducted a single-arm pilot feasibility trial of C-PRIME (Caregiver Protocol for Remotely Improving, Monitoring, and Extending Quality of Life), an 8-week digital health-promotion behavioral intervention involving monitoring and visualizing health-promoting behaviors (e.g., objective sleep and physical activity data) and health coaching (NCT05379933). A priori benchmarks were established for feasibility (≥ 50% recruitment and objective data collection; ≥ 75% session engagement, measure completion, and retention) and patient satisfaction (> 3 on a 1-5 scale). Preliminary efficacy was explored with pre- to post-intervention changes in quality of life (QOL), sleep quality, social engagement, and self-efficacy., Results: Participants (N = 13) were M = 52 years old (SD = 14). Rates of recruitment (72%), session attendance (87%), assessment completion (87%), objective data collection (80%), and retention (100%) all indicated feasibility. All participants rated the intervention as acceptable (M = 4.7; SD = 0.8). Most participants showed improvement or maintenance of QOL (15% and 62%), sleep quality (23% and 62%), social engagement (23% and 69%), and general self-efficacy (23% and 62%)., Conclusion: The C-PRIME digital health promotion intervention demonstrated feasibility and acceptability among family caregivers of patients with advanced colorectal cancer. A fully powered randomized controlled trial is needed to test C-PRIME efficacy, mechanisms, and implementation outcomes, barriers, and facilitators in a divserse sample of family caregivers., Trial Registration: The Caregiver Protocol for Remotely Improving, Monitoring, and Extending Quality of Life (C-PRIME) study was registered on clinicaltrials.gov, NCT05379933, in May 2022., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background and Objectives: LGBTQ+ people are more likely to be caregivers for family and friends with life-limiting illnesses than non-LGBTQ+ people. LGBTQ+ caregivers may also experience stigma, bias, and discrimination, in addition to caregiving stress. Yet few studies have elicited LGBTQ+ family caregivers' perspectives on their end-of-life (EOL) experiences of home hospice., Research Design and Methods: We conducted semi-structured interviews with LGBTQ+ family caregivers of home hospice patients (N = 20). Following an interpretive descriptive approach, interview data were audio recorded, transcribed, and iteratively coded, and themes were developed and synthesized., Results: The burden of having to wonder expressed caregivers' uncertainty and concern about whether their negative experiences were common to all EOL caregivers or stemmed from cultural stigma and provider bias. Participants described how invisibility vs. risks of disclosure, anticipatory anxiety, perceived microaggressions, and protective vigilance increased stress and complicated caregiver-provider communication. Navigating EOL universalities vs. minority realities depicted underlying tensions between commonly assumed universalities of EOL caregiving and LGBTQ+-specific experiences. Providers' discomfort, awkward communication, lack of access to culturally competent EOL support resources, and broader structural and cultural discrimination eroded their sense of connectedness and safety. Together, these themes characterized the impact of minority stress at EOL., Discussion and Implications: Our findings suggest that LGBTQ+ hospice caregivers are at risk for minority stress in addition to more common sources of EOL caregiving pressures and thus have specific support and communication needs. Providers must understand this to deliver effective EOL care for all families., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Context: Measuring therapeutic connection during psilocybin-assisted therapy is essential to understand underlying mechanisms, inform training, and guide quality improvement. Purpose: To evaluate the feasibility of directly observing indicators of therapeutic connection during psilocybin administration encounters. Methods: We evaluated audio and video data from a recent clinical trial for observable expressions of therapeutic connection as defined in proposed best-practice competencies (i.e., empathic abiding presence and interpersonal grounding). We selected the first four 8-hour encounters involving unique participants, therapists, and gender pairs. Each video was independently coded by three members of an interprofessional six-person team. Using a structured checklist, coders recorded start-stop times, the audible (i.e., speech prosody or words) and visible (i.e., body movements, eye gaze, and touch) cues marking the event, and the qualities of the interaction (e.g., expression of awe, trust, distress, and calmness). We assessed feasibility by observing the frequency, distribution, and overlap of cues and qualities coders used to identify and define moments of therapeutic connection. Results: Among the 2074 minutes of video, coders recorded 372 moments of therapeutic connection. Eighty-three percent were identified by at least two coders and 41% by all three. Coders used a combination of audible and visual cues to identify therapeutic connection in 51% of observed events (190/372). Both the cues and qualities of therapeutic connection expressions varied over the course of psilocybin temporal effects on states of consciousness. Conclusion: Direct observation of therapeutic human connection is feasible, sensitive to changes in states of consciousness and requires evaluation of audible and visual data.

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 by The Hospice and Palliative Nurses Association. All rights reserved.)

Introduction: Barriers exist in access to primary care as well as specialty healthcare such as gender-affirming care. Understanding the referral sources used to identify new providers for these types of care can help healthcare systems facilitate access., Methods: Using data from a community-based survey, demographics and information relevant to finding new healthcare providers were assessed., Results: Data from 165 participants suggest that seeking a new primary care provider was perceived as challenging. The most common referral sources for primary care providers were family/friends, a doctor, or a medical center website. The most common referral sources for gender-affirming care providers were a doctor, family/friends, or social media. There were significant differences in the types of referral sources most likely to be utilized for primary versus gender-affirming care., Conclusions: Personal connections, including trusted doctors, can be important sources of provider referrals. Additional resources may be needed to facilitate their ability to make quality connections. Community resources and social media can be important sources when existing social networks may not have knowledge about the needs of particular communities, especially those who may be at risk of discrimination. More inclusive and secure referral sources may be needed to ensure gender-affirming care referrals are made., (© 2023 The Author(s).)

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 by The Hospice and Palliative Nurses Association. All rights reserved.)

Objective: To examine preliminary effects of ReStoreD (Resilience after Stroke in Dyads) on resilience in couples coping with stroke-related challenges., Design: Supplemental analysis of prospective pilot trial with pre-/post-assessments and 3-month follow-up., Setting: Community., Participants: Thirty-four cohabitating stroke-care partner dyads (N=34); at least 3 months post-stroke., Interventions: 8-week self-administered dyadic intervention (ReStoreD) consisting of activities completed individually and as a couple., Main Outcome Measures: 10-item Connor-Davidson Resilience Scale., Results: Care partner baseline resilience scores were significantly higher than persons with stroke scores. Repeated-measures analysis of variance suggest significant pre-post improvement in resilience for persons with stroke (mean difference [I - J]=-2.42, SE=.91, P=.04, 95% CI [-4.75, -0.08]) with a large effect size (η 2 =.34), which was maintained at 3-month follow-up. Care partners showed no significant change over time., Conclusions: This study provides preliminary evidence that ReStoreD improves resilience in persons with stroke. More research is needed to address resilience in care partners. These findings represent a promising first step to address the mental health needs in this population., (Copyright © 2023 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: A diagnosis of pediatric cancer can leave healthy siblings with limited access to support. Technology-mediated interpersonal interactions have been noted among adolescent and young adults with cancer and may be an effective source of support for adolescent siblings of children with cancer. In this study, we understand how adolescent siblings use technology to connect with their support network and how their technology use changes after their sibling's cancer diagnosis. Methods: Participants included a national sample ( N  = 24) of adolescents aged 12-17 who had a sibling diagnosed with cancer in the last 2 years (up to 3 years if still receiving curative-focused treatment). Ecomaps were cocreated with participants to identify sources of social support and modality of interactions. Interviews were transcribed, coded, content analyzed, and descriptively summarized. Results: Adolescent siblings (mean = 14.2 years) perceived technology as a tool to maintain support from their established personal network, rather than a way to expand sources of social support. Most did not seek support or information about cancer outside their known network, preferring information to come from parents or trusted network members. Siblings identified video calls as an important resource for connecting with parents, their sick brother or sister, and others to receive emotional support and companionship. Conclusions: Findings suggest that adolescent siblings of children use technology to connect with their established network for support, an important finding for designing assessments and interventions for this population. Future inquiry should explore these differences, identify unmet needs, and inform acceptable, effective interventions to augment support.

Objectives: To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving., Sample & Setting: Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis., Methods & Variables: Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions., Results: Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age., Implications for Nursing: Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.

Background: Social distancing during the COVID-19 pandemic limited how family, friends, and clinicians physically interacted with people who were dying and decreased communal opportunities for processing grief. These barriers can cause or exacerbate suffering due to loneliness while grieving., Purpose: In this article, we describe the protocol for a brief storytelling intervention designed to reduce loneliness among families, friends, and clinicians grieving the death of a person during the time of COVID-19., Methods: We trained four StoryListening doulas (SLDs) to hold a welcoming space and listen to stories with curiosity and openness. The intervention included a video StoryListening session and two brief questionnaires, filled out before and two weeks after the encounter, assessing loneliness and quality of life. During sessions, SLDs invited participants to share their story of loss in their own words and in as much detail as preferred. When participants felt a sense of story completion, SLDs shared validating statements and expressed gratitude to the participant for sharing. The video and audio for each participant's StoryListening encounter were recorded and the participant was offered an audio copy of their session., Competing Interests: No authors have conflicts of interest to report., (© Francesca Lynn Arnoldy et al., 2023; Published by Mary Ann Liebert, Inc.)

Objective: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations., Methods: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs., Results: Dyads ( N  = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%)., Conclusion: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving., Innovation: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures., Competing Interests: The authors report there are no competing interests to declare., (© 2023 The Authors.)

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health ( β  = -0.82 [-1.22 to -0.42], p  < 0.001), positive affect and well-being scores ( β  = -0.69 [-1.03 to -0.36], p  < 0.001), and higher depression ( β  = 0.24 [0.12-0.37], p  < 0.001) and anxiety scores ( β  = 0.22 [0.07-0.37], p  < 0.005). Employment status significantly moderated the relationship between burden and global health ( β  = 0.65 [0.22 to 1.08], p  < 0.005), and burden and positive affect and well-being ( β  = 0.45 [0.06 to 0.84], p  < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.

Objectives: To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers., Subjects and Methods: Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone., Results: Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up.", Conclusions: High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care., Competing Interests: Declaration of Competing Interest The authors have no relevant conflicts of interest to disclose., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Purpose: The way Hospice Care Team (HCT) members talk about patients and caregivers reflects personal attitudes and experiences, training, and broader social and cultural discourse. This secondary analysis examined the framing language professional hospice care providers used when discussing end-of-life care for LGBTQ+ patients and caregivers., Methods: Discourse analysis and frame theory informed a secondary, qualitative analysis of focus group data collected with hospice providers (N = 48) in 3 U.S. states regarding their knowledge, experience, and opinions about end-of-life care for LGBTQ+ patients and caregivers., Results: The following four (often overlapping) frames were identified (1) A normalizing frame which dismissed differences between LGBTQ+ patients/caregivers and non-LGBTQ+ individuals in general, and especially at end-of-life (2) A homogenizing frame which cast being LGBTQ+ as an intrinsic, universal characteristic and did not differentiate between different groups, specifically conflating orientation and gender identity (3) A pathologizing frame in which providers related being LGBTQ+ to disease conditions or illegal behaviors (4) An individualizing frame which focused on between-group differences, acknowledged variation, and emphasized the importance of historical context for personalized care., Conclusion: Examination of discursive frames used by providers enhances understanding of how social and cultural influences, along with training and experience, shape how HCT members approach working with LGBTQ+ patients and families, and illuminates areas where additional education and training are needed. Our findings support the need for ongoing efforts to improve HCT members' knowledge and skill regarding the needs of LGBTQ+ patients and families within the context of hospice and end-of-life care.

Patients with hereditary cancer predisposition syndromes have a high likelihood of passing germline mutations to future offspring. Patients at risk for inherited cancer may not have started and/or completed building their families; thus, they must decide about having children and consider the possibility of passing on their germline mutation. Utilizing the Shared Decision Making (SDM) Model, this study explores family building decision-making communication processes in opposite-sex couples with inherited cancer risk (ICR). Fifteen couples completed two recorded, analogue discussions and dyadic interviews at two time points. Participants were recruited through social media and snowball sampling. The constant comparison method was utilized to thematically analyze the data. When couples discussed family building options (FBOs), several themes were identified: FBO risks, FBO considerations, genetic-related FBO logistics, and life FBOs logistics. When deliberating family building decisions, couples shared easy conversational topics (e.g. FBO options and potential child's cancer risk due to a genetic variant) and difficult/conflict-inducing topics (e.g. preparing for possibilities, parenting, emotions, finances, and timing). Last, couples self-reported primary and secondary FBOs. The findings of this study capture couples' decision-making communication process while considering their experiences. Clinicians and practitioners can utilize these findings to support couples' family building decisions considering their ICR.

Purpose: Goals provide insight into what is important to an individual. We describe the development and application of a mixed methods approach to elicit goals and perceptions about goals in patients with advanced cancer., Methods: Patients receiving first-line treatment for advanced lung cancer participated in semi-structured interviews about their goals. Participants self-generated goals, then selected and ranked their three most important goals and provided Likert scale ratings of goal-related perceptions (e.g., attainability, locus of control). Independent raters coded goals into content domains. One month later, participants reported perceived progress toward goals and facilitators of and barriers to progress., Results: Participants (N = 75, M age  = 64.5 years, 59% female) identified goals across eight domains: social/role/relationship, everyday/practical, leisure/pleasure, psychological/existential/spiritual, major life changes or achievements, cancer treatment response/disease outcomes, palliative outcomes, and behavioral health improvement. Of all goals identified (N = 352), 72% of patients had at least one social/role/relationship goal, 68% had a leisure/pleasure goal, and 29% had a cancer treatment response goal. On average, participants considered their goals to be attainable, perceived a high degree of control over reaching goals, anticipated making "some" progress in the short term, and perceived a high likelihood of reaching goals in the future. Facilitators of progress included mental fortitude, feeling physically well, and social support. Barriers included cancer-related side effects, practical challenges, and COVID-19., Conclusions: A majority of participant goals focused on meaningful engagement and living well. Goals were largely viewed as attainable and under participants' control. Cancer clinicians may consider how to support patients in working toward valued goals in conjunction with oncology care., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Context : Family caregivers assume the primary responsibility of assessing and managing hospice cancer patient symptoms while simultaneously managing their own wellbeing and symptoms. Objectives : Describe caregivers' assessment of hospice cancer patient and their own symptoms during the last 60 days of patient life, and assess the relationship between patient and caregiver symptoms over time. Methods : Caregiver symptom report of self and cancer home hospice patient symptom data were collected via telephone in the final 60 days of patient life. Descriptive data on symptom severity and prevalence were summarized. Exploratory Factor Analysis was used to group individual symptoms. Factors representing patient symptoms, caregiver symptoms, and caregiver outlook were analyzed using mixed-effects analysis to determine relationships between factors and change in relationship between factors over time. Results : Data from 61 patient-caregiver dyads are presented. At least 1 day of moderate-to-severe symptoms were reported in the majority of dyads. Significant auto-regressive associations were found, namely previous factor scores for an individual positively predicted the next factor scores for that individual. Previous caregiver report of patient symptoms was also positively associated with the next report of caregiver symptoms; previous caregiver report of their own symptoms were negatively associated with their next report of patient symptoms. Patient and caregiver symptoms and caregiver outlook worsened over time and the relationship between patient and caregiver symptoms strengthened closer to death. Conclusion : Our findings may guide hospice care team responses to caregiver and patient symptoms to promote individual level and unit level functioning.

Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers' social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers' perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient's death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.

Objectives: Head and neck cancer (HNC) patients experience greater financial toxicity than other cancer patients. Research on financial toxicity has concentrated on patients despite many informal caregivers sharing finances and reducing work hours to provide patient care. Thus, our pilot study: (1) assessed the feasibility of financial toxicity screening of HNC patients and their caregivers, and (2) described financial toxicity levels of HNC patients and their caregivers., Methods: We surveyed English-speaking adult HNC patients initiating treatment at a National Cancer Institute-designated Comprehensive Cancer Center and their informal caregivers. This survey assessed demographics and financial toxicity through the Comprehensive Score for Financial Toxicity (COST) measure (0-44 range; lower score indicates higher financial toxicity). Screening feasibility was defined as ≥50% consent rate and ≥60% data completion rate., Results: Our sample included 27 HNC patients and 9 caregivers. They both had slightly lower consent and completion rates than our goals. Patients reported a median COST score of 27 while caregivers reported a median COST score of 16. Approximately 25.9% of patients and 44.4% of caregivers reported high financial toxicity (COST < 17.5). Caregivers reported high concerns about their future financial health and their ability to control the amount of their financial contributions to the patient's care., Conclusions: Patients and caregivers may require additional outreach approaches beyond emailed questionnaires to screen for their financial toxicity systematically. Future research is needed to replicate our results to determine whether differences in financial toxicity occur between patients and caregivers and identify areas of focus for interventions., Level of Evidence: IV., Competing Interests: The authors declare no conflicts of interest., (© 2023 The Authors. Laryngoscope Investigative Otolaryngology published by Wiley Periodicals LLC on behalf of The Triological Society.)

Context: Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being., Objectives: 1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms., Methods: Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes., Results: Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%)., Conclusion: Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The events surrounding the COVID-19 pandemic have created heightened challenges to coping with loss and grief for family and friends of deceased individuals, as well as clinicians who experience loss of their patients. There is an urgent need for remotely delivered interventions to support those experiencing grief, particularly due to growing numbers of bereaved individuals during the COVID-19 pandemic. Objective: To determine the feasibility and acceptability of the brief, remotely delivered StoryListening storytelling intervention for individuals experiencing grief during the COVID pandemic. Setting/Subjects: A single-arm pilot study was conducted in the United States. Participants included adult English-speaking family members, friends, or clinicians of individuals who died during the COVID-19 pandemic. All participants engaged in a televideo StoryListening session with a trained StoryListening doula. Measurements: Participants completed a brief follow-up telephone interview two weeks after the StoryListening session. We describe enrollment and retention data to assess feasibility and conducted a deductive thematic analysis of the follow-up interview data to assess acceptability. Results: Sixteen clinicians and 48 friends/family members enrolled in the study ( n  = 64; 75% enrollment), 62 completed a StoryListening session; 60 completed the follow-up interview. Participants reported that the intervention was useful and offered a valuable opportunity to process their grief experience. Conclusions: The StoryListening intervention is feasible and acceptable for friends/family members and clinicians who have experienced grief during COVID. Our intervention may offer an accessible first-line option to address the increasing wave of bereavement-related distress and clinician burnout in the United States.

Chimeric antigen receptor T-cells and other immunotherapies have markedly changed the paradigm of treatment for patients with relapsed or refractory hematologic malignancies. While notable in efficacy, immunotherapy is characterized by a significant possibility of life-threatening side effects. Consequently, patients are often required to have informal family caregivers present and to stay near the treating center for several weeks after cell infusion. Further, the responsibility of managing a great deal of physical care and emotional support falls to these caregivers. Given the novelty of immunotherapy treatment, there is a need to better understand the psychosocial experience of patients receiving this treatment and their caregivers. This article describes the psychosocial characteristics of patients undergoing cellular immunotherapies and their caregivers across time, including patient/caregiver distress, coping, and caregiver burden and preparedness.

Objectives: Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers' heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers' knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers' perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices., Methods: Six focus groups conducted with HCT providers ( n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded ( κ = 0.77), aggregated by topical categories, and descriptively summarized., Results: Participants were mostly white and non-Hispanic ( n = 43, 89.6%), cisgender female ( n = 42, 87.5%), heterosexual ( n = 35, 72.9%), and religious ( n = 33, 68.8%); they averaged 49 years of age (range 26-72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers., Significance of Results: Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

Examine the impact of the primary-support person (PSP) role on advanced cancer patient and spouse caregiver psychological well-being, above and beyond the effects of relationship satisfaction., Secondary analysis of cross-sectional questionnaire data., 88 advanced cancer patient/spouse-caregiver dyads., Patients and caregivers independently completed measures assessing depression, anxiety, perceived stress, and relationship satisfaction, and identified their PSP. Patient and caregiver psychological well-being outcomes were regressed on patient and caregiver PSP variables in an actor-partner interdependence model., Half of patients identified their caregiver as PSP; 9% of caregivers identified their patient as PSP. When caregivers identified their patient as PSP, the patient reported better outcomes. No associations were seen for patient identification of caregiver as PSP or caregiver well-being., Clinicians can encourage patients to find ways to continue to focus on their relationship with the caregiver and help caregivers connect with other sources of support.

Aim: To develop a cognitive dysfunction (CD) focused questionnaire to evaluate caregiver burden in glioblastoma. Materials & methods: The survey was developed from stakeholder consultations and a pilot study, and disseminated at eight US academic cancer centers. Caregivers self-reported caring for an adult with glioblastoma and CD. Results: The 89-item survey covered demographics, CD symptoms and caregiver burden domains. Among 185 caregivers, most were white, educated females and reported memory problems as the most common CD symptom. An exposure-effect was observed, with increase in number of CD symptoms significantly associated with greater caregiver burden. Conclusion: This questionnaire could guide caregiver interventions and be adapted for use longitudinally, in community cancer settings, and in patients with brain metastases.

Patient navigation is increasingly common in cancer care. While navigation programs often involve informal family caregivers, few navigation interventions specifically target the family caregiver. We developed the eSNAP and Caregiver Navigator Intervention to help cancer family caregivers identify and capitalize on informal and formal social support resources. While the skill set for patient navigators may be adequate for supporting caregivers, other skills and areas of knowledge expertise are needed. In addition, sparse documentation of navigator training best practices creates further challenges for dissemination and implementation. Our goal is to describe the education and training of cancer caregiver navigators within key competencies used to prepare and support navigators to deliver our manualized intervention. Nationally recognized navigation competencies, related to developing a sensitivity to ethical, cultural, and professional issues, knowledge development, skills development, and practice-based learning, were identified and adapted. Performance goals were identified within each competency. Training activities were selected to support competency development. Based on adult learning theories, we emphasize multiple learning strategies, including experiential learning and critical reflection. Two caregiver navigators engaged in initial training between December, 2019 and February, 2020. Initial training was supervised by study leadership, who coordinated with experts and stakeholders. Navigators completed initial training. We describe lessons learned. To ensure that navigators are well-equipped to provide effective services, evidence-based training programs that include navigation and protocol-specific competencies are needed. Given the lack of detailed training programs in the literature, we created a flexible, multimodal learning approach that other teams may adopt., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)