Applying the RISE Model of Resilience in Partners Post-Stroke: A Qualitative Analysis.

BACKGROUND: Resilience is dynamic and influenced by internal and external factors. In persons with chronic illness and/or disability, resilience is viewed as the ability to adapt to new life circumstances. Existing models of resilience typically focus on the absence of deficit and pathology in the individual, overlooking resources, well-being, and broader social impacts. Our proposed novel Relational, Intrapersonal, Social and Environmental (RISE) Model of resilience incorporates and describes the interconnection and influence of constructs that impact resilience and affect the quality of life. PURPOSE: The purpose of this study is to examine the fit of the RISE Model against original interview data obtained from persons with stroke and their partners. METHODS: This study is a secondary analysis of qualitative data collected from post-intervention interviews that were part of an intervention pilot study designed to promote resilience in couples coping with stroke. Interviews were coded to examine relationships between RISE Model constructs. RESULTS: The study included 36 interviews from 18 cohabitating couples; mean participant age was 53.33 years (SD ±14.70). Examples of each construct within the RISE Model appeared in transcribed interviews and common patterns of co-occurring constructs were identified. CONCLUSION: The constructs within the RISE Model were supported by the interviews. The impact of disability does not remain confined to a single individual and instead branches out into the broader social context, including close interpersonal relationships. A deeper understanding of resilience and its relationship with intrapersonal, interpersonal and socio-ecological constructs would add value to our understanding and fostering of resilience in persons with disabilities and/or chronic illness. CLINICAL TRIAL INFORMATION: NCT03335358.

"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).

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.

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.

"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.

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.

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.

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.

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.

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.

Caring for a spouse with advanced cancer: similarities and differences for male and female caregivers.

Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health.

The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer.

Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black women disclose genetic test results and (b) if patterns of disclosure vary based on test result (e.g., BRCA1/2 positive, negative, variant of uncertain significance [VUS]). Black women (N = 149) with invasive breast cancer diagnosed age ≤50 years from 2009 to 2012 received free genetic testing through a prospective, population-based study. At 12 months post-testing, women reported with whom they shared their genetic test results. The exact test by binomial distribution was used to examine whether disclosure to female relatives was significantly greater than disclosure to male relatives, and logistic regression analyses tested for differences in disclosure to any female relative, any male relative, parents, siblings, children, and spouses by genetic test result. Most (77%) women disclosed their results to at least one family member. Disclosure to female relatives was significantly greater than disclosure to males (p < .001). Compared to those who tested negative or had a VUS, BRCA1/2-positive women were significantly less likely to disclose results to their daughters (ORBRCApositive  = 0.25, 95% CI = 0.07-0.94, p = .041) by 12 months post-genetic testing. Genetic test result did not predict any other type of disclosure (all ps > 0.12). Results suggest that in Black families, one benefit of genetic testing-to inform patients and their family about cancer risk information-is not being realized. To increase breast cancer preventive care among high-risk Black women, the oncology care team should prepare Black BRCA1/2-positive women to share genetic test results with family members and, in particular, their daughters.

"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.

Social networks of caregivers of patients with primary malignant brain tumor.

Family caregivers are increasingly recognized as a vital part of the comprehensive treatment of cancer. Many caregivers, especially those caring for patients with primary malignant brain tumor (PMBT), report feeling overwhelmed by providing care. Social support can be protective for caregiving, but there is little research on the composition of social networks of caregivers. The research describes these social networks. Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center in the United States from May to August 2017. Caregivers listed social network resources that they either have approached or could approach for help in six caregiving areas. Twenty-eight caregivers provided social network data. Most caregivers had at least some support in each category, with the most people in hands on and emotional support. Communication and financial support were less populated and were most likely to have no resources listed. Most resources were unique to one support category, but a smaller number of resources provided multiple types of support. Our data provide information for targeting interventions to address support needs in caregivers of patients with PMBT. These findings also represent the first time the compositions of the social networks of caregivers of patients with PMBT have been presented.

Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers.

INTRODUCTION: Informal family caregivers (FCG) are an integral and crucial human component in the cancer care continuum. However, research and interventions to help alleviate documented anxiety and burden on this group is lacking. To address the absence of effective interventions, we developed the electronic Support Network Assessment Program (eSNAP) which aims to automate the capture and visualization of social support, an important target for overall FCG support. This study seeks to describe the preliminary efficacy and outcomes of the eSNAP intervention. METHODS: Forty FCGs were enrolled into a longitudinal, two-group randomized design to compare the eSNAP intervention in caregivers of patients with primary brain tumors against controls who did not receive the intervention. Participants were followed for six weeks with questionnaires to assess demographics, caregiver burden, anxiety, depression, and social support. Questionnaires given at baseline (T1) and then 3-weeks (T2), and 6-weeks (T3) post baseline questionnaire. RESULTS: FCGs reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups. CONCLUSIONS: With the lessons learned and feedback obtained from FCGs, this study is the first step to developing an effective social support intervention to support FCGs and healthcare providers in improving cancer care.

Feasibility of implementing an electronic social support and resource visualization tool for caregivers in a neuro-oncology clinic.

PURPOSE: The goals of this study were to assess the feasibility of a web-based application-electronic Social Network Assessment Program (eSNAP)-to automate the capture and visualization of family caregiver social network data of neuro-oncology patients. METHODS: Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center. Participants completed baseline questionnaires on a laptop in clinic assessing demographic characteristics. After baseline, participants were randomly assigned to either create a social network visualization using eSNAP (intervention) or to usual care (control) condition. Those who used eSNAP provided likeability/usability data. All participants were asked to complete follow-up questionnaires at 3 and 6 weeks after baseline to determine feasibility of longitudinal study. RESULTS: We recruited 40 caregivers of patients with primary malignant brain tumor to participate in this study. Participants rated eSNAP usability and likeability highly, indicating that eSNAP would help them consider their available social support. At 3 weeks, 90% of participants completed questionnaires and 82.5% completed questionnaires at 6 weeks. CONCLUSIONS: There is a need to encourage family caregivers of patients with primary malignant brain tumor to engage their existing social network resources to help alleviate caregiver burden. Our findings suggest that our web-based application to address this issue is feasible to implement with high usability and likeability. This pilot study identified minor changes to the intervention to improve effectiveness and has implications for future research in this understudied population. TRIAL REGISTRATION: clinicaltrials.gov, protocol number NCT03026699.

PIECES of My RELATIONSHIPS: The Cultural Adaptation of a Biographical Assessment Tool for Indigenous Older Adults in Canada.

BACKGROUND AND OBJECTIVES: Healthcare services are rarely designed to meet the needs of Indigenous people, resulting in culturally unsafe care and assessment tools. This paper describes a collaboration between North East Behavioural Supports Ontario (NEBSO), university researchers, and Indigenous communities to adapt a biographical assessment tool used by NEBSO to be culturally appropriate and safe for Indigenous older adults (55+) in long-term care facilities in Ontario, Canada. RESEARCH DESIGN AND METHODS: Over 36 months, this project applied an Indigenized, community-based participatory research (CBPR) and cultural safety framework to the adaptation process. Qualitative data sources include the guidance of an Indigenous Elder, an Anishinaabe Language Expert Group, and focus groups conducted along the North Shore of Lake Huron, Sudbury, and Cochrane, Ontario. RESULTS: The adapted tool shifts the focus from personhood to relationships, includes culturally relevant domains, and supports trauma-informed approaches. Five themes were identified during the adaptation process: (1) practicing a relational approach to care, (2) valuing Indigenous language, (3) understanding Indigenous trauma, (4) respecting cultural values and understandings, and (5) addressing systemic barriers to culturally safe care. DISCUSSION AND IMPLICATIONS: Themes elucidated from this research process can inform future studies adapting mainstream practice tools and developing new tools for Indigenous populations. The collaboration and approach to this adaptation process demonstrated how cultural safety at systemic and practice levels can be addressed through CPBR partnerships between universities, organizations, and Indigenous communities. Findings support the need to evaluate the cultural safety of other assessments for older Indigenous adults in health care settings.

Training Indigenous Community Researchers for Community-Based Participatory Ethnographic Dementia Research: A Second-Generation Model.

Conducting community-based participatory research (CBPR) is a complex endeavor, particularly when training non-academic community members. Though examples of CBPR training programs and protocols have been published, they often address a limited set of concepts and are tailored for university or medical school students. Here, we describe the process of developing an online CBPR training program for American Indian (United States) and Indigenous (Canada) community members to conduct multi-sited ethnographic dementia research. This program is unique in its breadth and depth, as our program covers CBPR theory, methods, practical research, and administrative skills. Significantly, this program centers Indigenous methodology, pedagogy, and processes such as two-eyed seeing, storywork, and decolonization approaches. Key to this training program is a "second-generation" approach which incorporates experiential knowledge from prior community-based researchers and academic partners and is designed to develop CBPR capacity among community-based researchers and partnering communities. In this paper, we detail the experience of the first cohort of learners and subsequent improvement of the training materials. Unique challenges related to the specific research focus (dementia care pathway), population/setting (American Indian and Indigenous communities), and technology (rural digital infrastructure) are also discussed.

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.