Psychosocial characteristics of patients undergoing cellular immunotherapies and their caregivers across time.

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.

Positive Psychology Approaches to Interventions for Cancer Dyads: A Scoping Review.

OBJECTIVE: Positive psychology approaches (PPAs) to interventions focus on developing positive cognitions, emotions, and behavior. Benefits of these interventions may be compounded when delivered to interdependent dyads. However, dyadic interventions involving PPAs are relatively new in the cancer context. This scoping review aimed to provide an overview of the available research evidence for use of dyadic PPA-based interventions in cancer and identify gaps in this literature. METHODS: Following PRISMA guidelines, we conducted a scoping review of intervention studies that included PPAs delivered to both members of an adult dyad including a cancer patient and support person (e.g., family caregiver, intimate partner). RESULTS: Forty-eight studies, including 39 primary analyses and 28 unique interventions, were included. Most often (53.8%), the support person in the dyad was broadly defined as a "caregiver"; the most frequent specifically-defined role was spouse (41.0%). PPAs (e.g., meaning making) were often paired with other intervention components (e.g., education). Outcomes were mostly individual well-being or dyadic coping/adjustment. CONCLUSIONS: Wide variability exists in PPA type/function and their targeted outcomes. More work is needed to refine the definition/terminology and understand specific mechanisms of positive psychology approaches.

"I Beat Cancer to Feel Sick:" Qualitative Experiences of Sleep Disturbance in Black Breast Cancer Survivors and Recommendations for Culturally Targeted Sleep Interventions.

BACKGROUND: Sleep disturbance is common and distressing among cancer survivors. Black breast cancer survivors (BBCS) suffer disproportionately from sleep disturbance, yet there is limited research on how to address this issue. PURPOSE: This study aimed to understand the multifaceted experiences of sleep disturbance among BBCS and how to culturally target a mobile health (mHealth) intervention to improve sleep outcomes in BBCS. METHODS: Semi-structured interviews were conducted in a purposive sample of 10 BBCS. Interviews were audio-recorded, transcribed, and coded for key barriers to sleep and potential solutions to incorporate into behavioral interventions using NVivo 12. Inductive applied thematic analysis techniques were employed to identify emergent themes. RESULTS: Ten BBCS (mean age = 54, SD = 10) described their experiences of sleep disturbance with themes including: (1) barriers to quality sleep (e.g., cancer worry, personal responsibilities), (2) psychosocial impacts of sleep disturbance (e.g., fatigue, distress), and (3) commonly used strategies to improve sleep. The second section discusses suggestions for developing mHealth interventions to improve sleep for BBCS including: (1) feedback on an existing mHealth intervention and (2) intervention topics suggested by BBCS. CONCLUSIONS: Our findings highlight the challenges associated with sleep disturbance in BBCS. Participants report culturally targeted mHealth interventions are needed for BBCS who experience chronic sleep disturbance that affects their overall quality of life. These interventions should address coping with sleep-related issues relevant to many breast cancer survivors and BBCS (e.g., sexual intimacy, fear of cancer recurrence) and should incorporate intervention strategies acceptable to BBCS (e.g., prayer, meditation).

"It's Kind of Complicated": A Qualitative Exploration of Perceived Social Support in Young Adult and Young Adult Lesbian, Gay, Bisexual, Transgender, and/or Queer Cancer Survivors.

Purpose: This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ). Methods: Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support. Results: Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system. Conclusion: YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.

Feasibility, usability, and acceptability of personalized web-based assessment of social network and daily social support interactions over time.

PURPOSE: The purpose of this study was to test the feasibility, usability, and acceptability of implementing a web-based method for collecting social network and longitudinal daily interaction data from cancer survivors and their caregivers. METHODS: Young adult and sexual/gender minority cancer survivors and their informal caregivers were recruited as dyads. Feasibility data, including enrollment and retention, were captured. Individual social network data were collected at baseline and used to individualize daily electronically delivered surveys assessing characteristics of daily social support-related interactions with identified network members for 14 days. Follow-up questionnaires assessing usability and exit interviews assessing acceptability were completed at the end of the 2-week study period. RESULTS: Fourteen survivor-caregiver dyads (28 individual participants) were enrolled and completed all baseline and final measures. Participants completed 85.2% of daily diary reports and reported excellent usability ratings. Acceptability was also high. In qualitative interviews, participants reported enjoying the daily reflection on social support facilitated by our methods. CONCLUSIONS: Our method has been shown to be highly feasible, usable, and acceptable. IMPLICATIONS FOR CANCER SURVIVORS: Developing better data collection tools can lead to better understanding of the social support cancer survivors and their caregivers receive, and how the social network structure facilitates or creates barriers to accessing this support.

What Happens When You Smoke a Cigarette Mindfully? A Deductive Qualitative Study.

Objectives: The mindful smoking exercise instructs participants to pay attention to a range of experiences while smoking a cigarette with the expectation that it will modify the often automatic process of smoking. Given its theoretical value, mindfulness- and acceptance and commitment therapy-based smoking cessation interventions have usually included a mindful smoking exercise. However, its utility has not been empirically examined. Through qualitative analyses, the current study examined smokers' lived experience with mindful smoking during an 8-week telehealth group-based smoking cessation and alcohol modification trial. Method: Participants were smokers who were present in group during the mindful smoking exercise. The recordings of sessions and follow-up interviews in which discussion on mindful smoking took place were transcribed and hand-coded for qualitative analysis. A thematic content analytic approach was used to identify themes. Results: Participants (N=20) were 75% female (mean age=49.75, average cigarettes per day=16.35). Identified themes mapped onto both the theoretical rationale for mindful smoking (e.g., attention/awareness, decentering, similarity/difference between mindful versus automatic smoking) and cognitive-affective-behavioral responses (e.g., unpleasant/pleasant experience, shifts in desire to smoke, cognitive reappraisal). The most prominent themes were attention/awareness, similarity/difference between mindful versus automatic smoking, and unpleasant/pleasant experience; Dynamic interplay between themes was also observed and representative quotes are included. Conclusions: Our findings indicate that intentionally paying attention to smoking led to the reporting of a heightened awareness of automatic behavior accompanied by noticing unpleasant aspects of smoking, potentially facilitating change in one's relationship to smoking. Theoretical implications of mindful smoking in the context of addiction are discussed.

Care for the Cancer Caregiver: a Qualitative Study of Facilitators and Barriers to Caregiver Integration and Support.

Informal family caregivers are critically important for patient care throughout the cancer care trajectory. Family-centered care, which seeks to integrate family members as experts, is a framework that values partnerships with family members and can benefit both the physical and psychosocial health of patients. However, little standardization or system-level implementation of family-centered care models to integrate and support family caregivers have emerged in adult oncology care settings in the USA. To better understand potential barriers and facilitators to the integration and support of family caregivers in cancer care settings, we conducted semi-structured interviews with informal family caregivers (n = 12) and members of the cancer center leadership team and health care providers (n = 11) at an NCI-designated Comprehensive Cancer Center. We frame our results using the social ecological model and identified facilitators and barriers at the individual, interpersonal, and system level. While caregivers and team members were able to identify facilitators and barriers at the individual (i.e., caregivers are motivated to learn, but overwhelmed and focused only on the patient) and interpersonal levels (i.e., relationships are a valuable resource, but communication is sometimes challenging), team members were more likely to identify system-level barriers (i.e., constraints within the larger healthcare structure). To implement family-centered care in cancer settings, it is incumbent on the healthcare system to pursue standardization of communication, programs that facilitate family integration and support, and advocate for policy change. Barriers must be addressed at multiple levels to provide inclusive and supportive environments for all patients and their families.

Attributions of survival and methods of coping of long-term ovarian cancer survivors: a qualitative study.

BACKGROUND: Only 8-23% of advanced epithelial ovarian cancer patients survive for 10 years or longer. Given the need for targeted interventions to improve survival, we interviewed this relatively rare survivor population to gain personalized insights into the reasons for their survival. The aim of this study was to characterize subjective attributions of survival and specific coping mechanisms long-term survivors of ovarian cancer. METHODS: Twenty-two semi-structured, qualitative interviews assessing survival attributions and coping strategies were conducted from April to November 2014. Data were analyzed in a multistep process using ATLAS.ti.8: codes were identified during review of the transcripts and refined with literature review; the frequency of codes and code co-occurrence was calculated, and codes were grouped into themes. Resulting themes were checked by a national leader of an ovarian cancer advocacy organization and compared against available literature. RESULTS: Thematic analysis found that participants credited their long-term survival to a variety of factors including medical, social, religious/spiritual, and lifestyle/personal characteristics. Some participants rejected these same attributions, concluding that the reason for survival was due to luck or unknowable. Several of Carver et al.'s theoretical dimensions of coping were evident in our sample: planning, positive reinterpretation, social support, religion and acceptance whereas three relatively new strategies were uncovered: conserving emotional energy, value-based activity coping, and self-care. CONCLUSIONS: Long-term survivors' perspectives were largely consistent with those of newly diagnosed ovarian cancer patients and ovarian cancer survivors of shorter duration. However, the long-term survivors were also willing to reject conventional attributions for survival and recognized the importance of disciplined self-preservational coping strategies.

The Dyadic Cancer Outcomes Framework: A general framework of the effects of cancer on patients and informal caregivers.

It is widely acknowledged that cancer affects not only patients but also their friends and family members who provide informal, and typically unpaid, care. Given the dual impact that cancer often has on patients and their informal caregivers (i.e., family members, partners, or friends), an expanded dyadic framework that encompasses a range of health and psychosocial outcomes and includes primary caregivers with a range of relationships to the patients is critically needed. Moreover, an emphasis on the role of social and contextual factors may help the framework resonate with a broader range of patient-caregiver relationships and allow for the development of more effective dyadic interventions. This article describes the development of the Dyadic Cancer Outcomes Framework, which was created to guide future research and intervention development. Using an iterative process, we conducted a conceptual review of currently used dyadic and/or caregiving models and frameworks and developed our own novel dyadic framework. Our novel Dyadic Cancer Outcomes Framework highlights individual- and dyad-level predictors and outcomes, as well as incorporating the disease trajectory and the social context. This framework can be used in conjunction with statistical approaches including the Actor Partner Interdependence Model to evaluate outcomes for different kinds of partner-caregiver dyads. This flexible framework can be used to guide intervention development and evaluation for cancer patients and their primary caregivers, with the ultimate goal of improving health, psychosocial, and relationship outcomes for both patients and caregivers. Future research will provide valuable information about the framework's effectiveness for this purpose.

Improving Electronic Survey Response Rates Among Cancer Center Patients During the COVID-19 Pandemic: Mixed Methods Pilot Study.

BACKGROUND: Surveys play a vital role in cancer research. During the COVID-19 pandemic, the use of electronic surveys is crucial to improve understanding of the patient experience. However, response rates to electronic surveys are often lower compared with those of paper surveys. OBJECTIVE: The aim of this study was to determine the best approach to improve response rates for an electronic survey administered to patients at a cancer center during the COVID-19 pandemic. METHODS: We contacted 2750 patients seen at Moffitt Cancer Center in the prior 5 years via email to complete a survey regarding their experience during the COVID-19 pandemic, with patients randomly assigned to a series of variations of prenotifications (ie, postcard, letter) or incentives (ie, small gift, modest gift card). In total, eight combinations were evaluated. Qualitative interviews were conducted to understand the level of patient understanding and burden with the survey, and quantitative analysis was used to evaluate the response rates between conditions. RESULTS: A total of 262 (9.5%) patients completed the survey and 9 participated in a qualitative interview. Interviews revealed minimal barriers in understanding or burden, which resulted in minor survey design changes. Compared to sending an email only, sending a postcard or letter prior to the email improved response rates from 3.7% to 9.8%. Similarly, inclusion of an incentive significantly increased the response rate from 5.4% to 16.7%, especially among racial (3.0% to 12.2%) and ethnic (6.4% to 21.0%) minorities, as well as among patients with low socioeconomic status (3.1% to 14.9%). CONCLUSIONS: Strategies to promote effective response rates include prenotification postcards or letters as well as monetary incentives. This work can inform future survey development to increase response rates for electronic surveys, particularly among hard-to-reach populations.

Using the health belief model to assess racial/ethnic disparities in cancer-related behaviors in an NCI-designated comprehensive cancer center catchment area.

BACKGROUND: Racial and ethnic minorities experience well-documented disparities across the cancer trajectory. However, factors underlying these disparities may vary regionally. The Health Belief Model (HBM) was developed to explain and predict health-related prevention and early detection behaviors, particularly uptake of health services. Our goal was to use the HBM to guide an exploration of factors that contribute to racial/ethnic health disparities in the catchment area of a large National Cancer Institute-designated Comprehensive Cancer Center in the Southeastern United States. METHODS: We conducted a secondary analysis of data collected by the cancer center for its triennial Community Health Needs Assessment, which sampled adults from the center's 15-county catchment area. White non-Hispanics (WNHs; n = 887), Black non-Hispanics (BNHs; n = 78), Hispanics/Latinxs (H/Ls; n = 185), and those identifying as another race/ethnicity ("Others"; n = 39) were compared across key HBM variables, including demographic/psychosocial information, perceived benefits and barriers to preventive health behaviors, risk perception, and health behavior outcomes. RESULTS: Controlling for annual household income, relationship status, and age (for certain screening behaviors), significant differences were seen in information-seeking behaviors, risk perception, community attributes, discrimination, and distress. Non-WNH groups reported worse community attributes, higher everyday discrimination, lower health literacy, less confidence in their ability to get health information, and lower perceived risk of cancer. CONCLUSION: This analysis presents a better understanding of how HBM factors may influence health disparities in the cancer center's catchment area. Results describe the needs of community members from racial and ethnic minority groups, which will inform future research, education, outreach, and service activities.

A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor.

BACKGROUND: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. METHODS: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. DISCUSSION: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. TRIAL REGISTRATION: clinicaltrials.gov , Registration number: NCT04268979 ; Date of registration: February 10, 2020, retrospectively registered.

The Psychosocial Impact of Spouse-Caregiver Chronic Health Conditions and Personal History of Cancer on Well-being in Patients With Advanced Cancer and Their Caregivers.

CONTEXT: Caregiving during advanced cancer presents many physical and psychological challenges, especially for caregivers who are coping with their own history of cancer or their own chronic health conditions. There is growing recognition that caregiver health and patient health are interdependent. OBJECTIVES: The objective of this study was to use quantitative and interview data to examine and explore the impact of a caregiver's personal cancer history and chronic health conditions on the psychosocial well-being of both the caregiver and patient. METHODS: This was a secondary analysis of data from 88 patients with advanced lung/gastrointestinal cancer and their spouse-caregivers. Participants self-reported subjective health, chronic health conditions (including cancer), anxiety and depression symptoms, and social support and social stress. Caregivers self-reported caregiving burden and preparedness for caregiving. Caregivers also completed semistructured interviews. RESULTS: Participants were mostly white, non-Hispanic, and in their mid-60s. Caregivers reported 1.40 (SD = 1.14) chronic conditions on average; 11 reported a personal history of cancer ("survivor-caregivers"). The number of caregiver chronic health conditions was positively associated with patient depression symptoms. Patients of survivor-caregivers also reported more depression symptoms than patients of caregivers without cancer (t(85) = -2.35, P = 0.021). Survivor-caregivers reported higher preparedness for caregiving than caregivers without cancer (t(85) = -2.48, P = 0.015). Interview data enriched quantitative findings and identified factors that may drive patient depression, including emotions such as resentment or guilt. Experiencing cancer personally may provide caregivers unique insight into the patient experience. CONCLUSION: Providers should be aware of caregiver chronic conditions and cancer history, given the potential negative effects on patient psychosocial well-being.

Communication between Advanced Cancer Patients and Their Family Caregivers: Relationship with Caregiver Burden and Preparedness for Caregiving.

Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.

The Me in We dyadic communication intervention is feasible and acceptable among advanced cancer patients and their family caregivers.

BACKGROUND: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share. AIM: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. DESIGN: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. SETTING/PARTICIPANTS: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. RESULTS: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. CONCLUSIONS: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.

"I think that a brief conversation from their provider can go a very long way": Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer.

OBJECTIVE: Identify predisposing, enabling, and reinforcing factors impacting genetic counseling/testing among ovarian cancer patients guided by Green and Kreuter's PRECEDE-PROCEED model. METHODS: Gynecologic oncology providers (N = 4), genetic counselors (N = 4), and ovarian cancer patients (N = 9) completed semi-structured qualitative interviews exploring participants' knowledge of and experiences with genetic counseling/testing. Interviews were audio recorded, transcribed verbatim, and analyzed using inductive content analysis by two independent raters. RESULTS: Thematic analysis identified predisposing, enabling, and reinforcing factors impacting referral for and uptake of genetic counseling/testing. Predisposing factors included participant's knowledge, beliefs, and attitudes related to genetic counseling/testing. Both patients and providers also cited that insurance coverage and out-of-pocket cost are major concerns for ovarian cancer patients considering genetic testing. Finally, both patients and providers emphasized that genetic counseling/testing would provide additional information to an ovarian cancer patient. While providers emphasized that genetic testing results were useful for informing a patient's personal treatment plan, patients emphasized that this knowledge would be beneficial for their family members. CONCLUSION: Barriers to genetic testing for ovarian cancer patients exist at multiple levels, including the patient (e.g., knowledge, attitudes), the provider (e.g., workload, availability of services), the institution (e.g., difficulty with referrals/scheduling), and the healthcare system (e.g., insurance/cost). Interventions aiming to increase genetic testing among ovarian cancer patients will likely need to target multiple levels of influence. Future quantitative studies are needed to replicate these results. This line of work will inform specific multilevel intervention strategies that are adaptable to different practice settings, ultimately improving guideline concordant care.

Partnering patients, caregivers, and basic scientists: an engagement model that fosters patient- and family-centered research culture.

Traditionally, basic scientists have not been as engaged in the translational continuum when it comes to engagement with patients, caregivers, and other community stakeholders. In order to address this discrepancy, a multi-disciplinary team at Moffitt Cancer Center conceived of and enacted the Patient-Researcher Forum (PRF) to promote a community-engaged research approach through communication, compassion, and bi-directional research insight for both patients/caregivers and researchers. We outline the structure and implementation of the PRF, its participants, and qualitative and quantitative results across 14 sessions. PRF sessions were conducted between July 2018 and October 2019 and included 29 patients/caregivers and close to 200 researcher/staff participants; post participation survey response rates assessing the PRF experience were 27.6% (patients/caregivers) and 60.3% (researchers) on average. Research staff overwhelmingly reported that the PRF was beneficial, citing that it helped them gain new patient-centered perspectives and helped them practice communicating research to lay audiences. Patients/caregivers also reported that the PRF was valuable, indicating that they gained a better understanding of research and that they developed a personal connection with researchers. Our PRF model may provide a strategy for improving basic scientist communication, ethics, and understanding of research impacts on the populations they wish to serve. This innovative model provides a much-needed direct connection between basic scientists and patients/caregivers which creates a 2-way learning platform that fosters understanding and research ideas in the spirit of community-engaged research.

Inclusion of transgender and gender diverse health data in cancer biorepositories.

Biobanks have the potential to be robust resource for understanding potential cancer risks associated with gender-affirming interventions. In this narrative review, we synthesized the current published literature regarding the inclusion of TGD health data in cancer biorepositories and cancer research conducted on biospecimens. Of the 6986 initial results, 153 (2.2%) assessed the biological effects of gender-affirming interventions on TGD tissues. Within that category, only one paper examined transgender tissues in relation to cancer biobanks. Strategies are offered to address the inequities in TGD tissue-based research and diversify the field of biobanking as a whole.

"In Eight Minutes We Talked More About Our Goals, Relationship, Than We Have in Years": A Pilot of Patient-Caregiver Discussions in a Neuro-Oncology Clinic.

Primary brain cancer is a diagnosis that can have drastic health impacts on patient and caregiver alike. In high-stress situations, dyadic coping can improve psychosocial and health outcomes and communication about personal life goals maybe one way to facilitate this coping. In this study, we describe the feasibility and accessibility of a one-time, self-directed goal discussion pilot intervention for neuro-oncology patients and their primary caregivers. Ten dyads were taken to a private room to complete a pre-discussion questionnaire, a worksheet to elicit personal goals, complete an 8-min discussion of goals, a post-discussion questionnaire, and provided open-ended feedback about the process. Post-discussion, dyads reported that the intervention was not stressful. In open-ended feedback, dyads overwhelmingly reported that the intervention was a positive experience, providing a safe, calm environment to have difficult conversations. This intervention provides a positive framework for improving communication and discussion of goals between patient-caregiver dyads.

In-home conversations of couples with advanced cancer: Support has its costs.

OBJECTIVE: The goal of this study was to describe the quality of naturalistic communication between patients with advanced cancer and their spouse caregivers using observational methods. We also assessed the association between patient and caregiver communication behaviors and psychological and physical health using the actor-partner interdependence model. METHODS: Data on 81 dyads were gathered as part of a prospective observational study. Patients with advanced cancer and their spouse caregivers completed demographic, physical health, and emotional well-being questionnaires. Cancer and relationship communication captured in "day-in-the-life" audio recordings were coded using Gottman's Turning System to assess the quality of bids for attention and responses. RESULTS: Bids for attention were most often informational (Low Bids) and responses were mostly positive and effortful (Turn Towards); patients and caregivers did not significantly differ in communication behavior. More effortful bids for attention (High Bids) were associated with more positive and effortful responses. Patient communication behaviors were significantly associated with caregiver emotional well-being, whereas caregiver communication behaviors were significantly associated with their own emotional well-being and patient physical health. CONCLUSIONS: While patients may benefit from caregivers' more positive and engaged communication at home, the emotional labor of focusing on and engaging the patient may take a toll on caregivers' own well-being. This work contributes to the understanding of what everyday communication looks like for patients with advanced cancer and their spouse caregivers and how this communication may impact physical and psychological health. Our findings provide a foundation to develop guidelines for psychosocial couple-based interventions.