Thematic Analysis of Psychosocial Stressors and Adaptive Coping Strategies Among Informal Caregivers of Patients Surviving ICU Admission for Coma.

BACKGROUND: Family caregivers of patients with severe acute brain injury (SABI) admitted to intensive care units (ICUs) with coma experience heightened emotional distress stemming from simultaneous stressors. Stress and coping frameworks can inform psychosocial intervention development by elucidating common challenges and ways of navigating such experiences but have yet to be employed with this population. The present study therefore sought to use a stress and coping framework to characterize the stressors and coping behaviors of family caregivers of patients with SABI hospitalized in ICUs and recovering after coma. METHODS: Our qualitative study recruited a convenience sample from 14 US neuroscience ICUs. Participants were family caregivers of patients who were admitted with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, traumatic brain injury, or hypoxic-ischemic encephalopathy; had experienced a comatose state for > 24 h; and completed or were scheduled for tracheostomy and/or gastrostomy tube placement. Participants were recruited < 7 days after transfer out of the neuroscience ICU. We conducted live online video interviews from May 2021 to January 2022. One semistructured interview per participant was recorded and subsequently transcribed. Recruitment was stopped when thematic saturation was reached. We deductively derived two domains using a stress and coping framework to guide thematic analysis. Within each domain, we inductively derived themes to comprehensively characterize caregivers' experiences. RESULTS: We interviewed 30 caregivers. We identified 18 themes within the two theory-driven domains, including ten themes describing practical, social, and emotional stressors experienced by caregivers and eight themes describing the psychological and behavioral coping strategies that caregivers attempted to enact. Nearly all caregivers described using avoidance or distraction as an initial coping strategy to manage overwhelming emotions. Caregivers also expressed awareness of more adaptive strategies (e.g., cultivation of positive emotions, acceptance, self-education, and soliciting social and medical support) but had challenges employing them because of their heightened emotional distress. CONCLUSIONS: In response to substantial stressors, family caregivers of patients with SABI attempted to enact various psychological and behavioral coping strategies. They described avoidance and distraction as less helpful than other coping strategies but had difficulty engaging in alternative strategies because of their emotional distress. These findings can directly inform the development of additional resources to mitigate the long-term impact of acute psychological distress among this caregiver population.

The urgency of restructuring the landscape of behavioral medicine: Commentary from early-career diversity institute scholars.

Structural and systemic barriers entrenched in academia have sustained for decades, and resulted in a lack of diversity in leadership positions, inequitable workloads for women and underrepresented racial/ethnic groups, and increasing issues with retention of faculty, particularly following the COVID-19 pandemic. Increasing opposition to diversity, equity, and inclusion (DEI) efforts in higher education via legislation, policies, and general anti-DEI sentiment contextualizes the importance of prioritizing DEI. The goal of this commentary is to open discussion among academic institutions regarding changes in DEI culture that will facilitate the growth of diverse early-career faculty (ECF). We use an adapted framework which incorporates DEI into a faculty competency model to (i) guide our discussion of the rationale for restructuring academic systems to promote DEI and (ii) recommend strategies for institutional progress for ECF that can translate across academic institutions. Implementing policies and practices that seek to recruit, retain, and support historically underrepresented ECF are needed, and may involve faculty mentorship programs, establishing equitable funding mechanisms, reforming faculty evaluation practices, and examining and correcting inequities in faculty workloads. The onus is on institutions to recognize and replace the exclusionary practices and biases that have existed within their walls, and continuously promote and monitor their DEI efforts and initiatives to ensure their efficacy. Inclusive academic cultures that demonstrate their value of diversity and commitment to equity promotion at all levels of the organization, including among ECF, are necessary for ensuring excellence in scholarship in academia.

Existing structural and systemic barriers in academia have continued for decades, and resulted in a lack of diversity in leadership positions, inequitable workloads for underrepresented gender and racial/ethnic groups, and increasing issues with retention of faculty, particularly following the COVID-19 pandemic. We outline the need for promoting diversity, equity, and inclusion (DEI) practices in academia, and that it will involve changes to the existing structures within universities. This is especially important as we want our higher education workforce to reflect our increasingly diverse society in its own diversity, but current policies and structures do not promote diversity in our institutions and in our research. Our rationale for restructuring academic systems to promote DEI also stems from a need for behavioral medicine and research more broadly to recognize and challenge the biases and practices that sustain inequity in our research­from the questions we ask, the participants we include (and exclude), and the ways in which the system creates unnecessary barriers for researchers who try to mitigate or address these biases in our work. We recommend implementing strategies for institutional progress that benefit diverse early-career faculty including mentoring programs, developing funding opportunities, changing faculty evaluation practices, and creating equitable workloads.

Genetic Findings of Potential Donor Origin following Hematopoietic Cell Transplantation: Recommendations on Donor Disclosure and Genetic Testing from the World Marrow Donor Association.

Following hematopoietic cell transplantation (HCT), recipients are subjected to extensive genetic testing to monitor the efficacy of the transplantation and identify relapsing malignant disease. This testing is increasingly including the use of large gene panels, which may lead to incidental identification of genetic and molecular information of potential donor origin. Deciphering whether variants are of donor origin, and if so, whether there are clinical implications for the donor can prove challenging. In response to queries from donor registries and transplant centers regarding best practices in managing donors when genetic mutations of potential donor origin are identified, the Medical Working Group of the World Marrow Donor Association established an expert group to review available evidence and develop a framework to aid decision making. These guidelines aim to provide recommendations on predonation consenting, postdonation testing of recipients, and informing and managing donors when findings of potential donor origin are identified in recipients post-transplantation. It is recognized that registries will have different access to resources and financing structures, and thus whenever possible, we have made suggestions on how recommendations can be adapted.

A Live Video Dyadic Resiliency Intervention to Prevent Chronic Emotional Distress Early After Dementia Diagnoses: Protocol for a Dyadic Mixed Methods Study.

BACKGROUND: By 2030, approximately 75 million adults will be living with Alzheimer disease and related dementias (ADRDs). ADRDs produce cognitive, emotional, and behavioral changes for persons living with dementia that undermine independence and produce considerable stressors for persons living with dementia and their spousal care-partners-together called a "dyad." Clinically elevated emotional distress (ie, depression and anxiety symptoms) is common for both dyad members after ADRD diagnosis, which can become chronic and negatively impact relationship functioning, health, quality of life, and collaborative management of progressive symptoms. OBJECTIVE: This study is part of a larger study that aims to develop, adapt, and establish the feasibility of Resilient Together for Alzheimer Disease and Related Dementias (RT-ADRD), a novel dyadic skills-based intervention aimed at preventing chronic emotional distress. This study aims to gather comprehensive information to develop the first iteration of RT-ADRD and inform a subsequent open pilot. Here, we describe the proposed study design and procedures. METHODS: All procedures will be conducted virtually (via phone and Zoom) to minimize participant burden and gather information regarding feasibility and best practices surrounding virtual procedures for older adults. We will recruit dyads (up to n=20) from Mount Sinai Hospital (MSH) clinics within 1 month of ADRD diagnosis. Dyads will be self-referred or referred by their treating neurologists and complete screening to assess emotional distress and capacity to consent to participate in the study. Consenting dyads will then participate in a 60-minute qualitative interview using an interview guide designed to assess common challenges, unmet needs, and support preferences and to gather feedback on the proposed RT-ADRD intervention content and design. Each dyad member will then have the opportunity to participate in an optional individual interview to gather additional feedback. Finally, each dyad member will complete a brief quantitative survey remotely (by phone, tablet, or computer) via a secure platform to assess feasibility of assessment and gather preliminary data to explore associations between proposed mechanisms of change and secondary outcomes. We will conduct preliminary explorations of feasibility markers, including recruitment, screening, live video interviews, quantitative data collection, and mixed methods analyses. RESULTS: This study has been approved by the MSH Institutional Review Board. We anticipate that the study will be completed by late 2023. CONCLUSIONS: We will use results from this study to develop the first live video telehealth dyadic resiliency intervention focused on the prevention of chronic emotional distress in couples shortly after ADRD diagnoses. Our study will allow us to gather comprehensive information from dyads on important factors to address in an early prevention-focused intervention and to explore feasibility of study procedures to inform future open pilot and pilot feasibility randomized control trial investigations of RT-ADRD. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/45532.

Spilling over at the boiling point: A commentary on the need for dyadic approaches to psychosocial care with older adults and their care-partners in postacute rehabilitation.

PURPOSE/OBJECTIVE: Older adults typically receive rehabilitation services following an acute medical event within the context of declining health. Post-acute rehabilitation often serves as a "boiling point" for health needs and is met with numerous shared emotional stressors related to recovery, long-term care, and end-of-life considerations among older patients and their care-partners-referred to together as a dyad. Psychosocial intervention that targets patients and care-partners separately misses the opportunity to support dyads who typically navigate health-related emotional challenges together. In the context of chronic and serious illness, dyadic interventions (i.e., patient and informal care-partner, together) can successfully reduce emotional distress as well as improve communication and collaborative illness management. However, this approach has yet to be applied to older post-acute rehabilitation patients and their care-partners. RESEARCH METHOD/DESIGN: In this commentary, we outline the need for dyadic psychosocial intervention approaches with older adults and their family care-partners in the context of post-acute rehabilitation. RESULTS: First, we provide evidence for the potential benefits of a dyadic approach to psychosocial care. Next, we review theoretical models as well as clinically relevant confounding factors that can inform dyadic psychosocial case conceptualization and intervention. Finally, we offer a real-world clinical case example that demonstrates the opportunity for dyadic intervention to address common psychosocial challenges seen by psychologists in post-acute rehabilitation settings. CONCLUSIONS/IMPLICATIONS: Our goal is to encourage rehabilitation psychologists to view dyadic intervention as a first-line approach to psychosocial care with the growing population of older adults and their family care-partners in post-acute rehabilitation settings. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Focus Group Study of Medical Stakeholders to Inform the Development of Resilient Together for Dementia: Protocol for a Postdiagnosis Live Video Dyadic Resiliency Intervention.

BACKGROUND: Alzheimer disease and related dementias (ADRD) are increasingly common conditions that disrupt the lives of persons living with dementia and their spousal care partners. At the time of ADRD diagnoses, many couples experience challenges that produce emotional distress and relationship strain. At present, there are no interventions to address these challenges early after diagnoses to promote positive adjustment. OBJECTIVE: The study protocol described here is part of the first phase of a larger program of research that aims to develop, adapt, and establish the feasibility of Resilient Together for Dementia (RT-ADRD), a novel dyadic skills-based intervention to be delivered over live video early after diagnosis, with the goal of preventing chronic emotional distress. This study will elicit and systematically summarize perspectives of ADRD medical stakeholders to inform the procedures (eg, recruitment and screening methods, eligibility, timing of intervention, and intervention delivery) of the first iteration of RT-ADRD prior to pilot-testing. METHODS: We will recruit interdisciplinary medical stakeholders (eg, neurologists, social workers, neuropsychologists, care coordinators, and speech language pathologists) from academic medical center clinics in the departments treating persons living with dementia such as neurology, psychiatry, and geriatric medicine via flyers and word-of-mouth referrals from clinic directors and members of relevant organizations (eg, dementia care collaboratives and Alzheimer disease research centers). The participants will complete electronic screening and consent procedures. Consenting individuals will then participate in a 30- to 60-minute qualitative virtual focus group, held either via telephone or Zoom, using an interview guide designed to assess provider experiences with postdiagnosis clinical care and to gather feedback on the proposed RT-ADRD protocol. The participants will also have the opportunity to participate in an optional exit interview and web-based survey to gather additional feedback. Qualitative data will be analyzed using a hybrid inductive-deductive approach and the framework method for thematic synthesis. We will conduct approximately 6 focus groups with 4-6 individuals in each group (maximum N=30 individuals; until saturation is reached). RESULTS: Data collection began in November 2022 and will continue through June 2023. We anticipate that the study will be completed by late 2023. CONCLUSIONS: The results from this study will inform the procedures of the first live video RT-ADRD dyadic resiliency intervention focused on the prevention of chronic emotional and relational distress in couples shortly after ADRD diagnoses. Our study will allow us to gather comprehensive information from stakeholders on ways to best deliver our early prevention-focused intervention and gain detailed feedback on study procedures prior to further testing. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/45533.

The relationship between mindfulness and enduring somatic threat severity in long-term cardiac arrest survivors.

BACKGROUND: Cardiac arrest (CA) survivors experience continuous exposures to potential traumas though chronic cognitive, physical and emotional sequelae and enduring somatic threats (ESTs) (i.e., recurring somatic traumatic reminders of the event). Sources of ESTs can include the daily sensation of an implantable cardioverter defibrillator (ICD), ICD-delivered shocks, pain from rescue compressions, fatigue, weakness, and changes in physical function. Mindfulness, defined as non-judgmental present-moment awareness, is a teachable skill that might help CA survivors cope with ESTs. Here we describe the severity of ESTs in a sample of long-term CA survivors and explore the cross-sectional relationship between mindfulness and severity of ESTs. METHODS: We analyzed survey data of long-term CA survivors who were members of the Sudden Cardiac Arrest Foundation (collected 10-11/2020). We assessed ESTs using 4 cardiac threat items from the Anxiety Sensitivity Index-revised (items range from 0 "very little" to 4 "very much") which we summed to create a score reflecting total EST burden (range 0-16). We assessed mindfulness using the Cognitive and Affective Mindfulness Scale-Revised. First, we summarized the distribution of EST scores. Second, we used linear regression to describe the relationship between mindfulness and EST severity adjusting for age, gender, time since arrest, COVID-19-related stress, and loss of income due to COVID. RESULTS: We included 145 CA survivors (mean age: 51 years, 52% male, 93.8% white, mean time since arrest: 6 years, 24.1% scored in the upper quarter of EST severity). Greater mindfulness (ß: -30, p = 0.002), older age (ß: -0.30, p = 0.01) and longer time since CA (ß: -0.23, p = 0.005) were associated with lower EST severity. Male sex was also associated with greater EST severity (ß: 0.21, p = 0.009). CONCLUSION: ESTs are common among CA survivors. Mindfulness may be a protective skill that CA survivors use to cope with ESTs. Future psychosocial interventions for the CA population should consider using mindfulness as a core skill to reduce ESTs.

The Impact of a Recent Concussion on College-Aged Individuals with Co-Occurring Anxiety: A Qualitative Investigation.

College-aged individuals with anxiety are vulnerable to developing persistent concussion symptoms, yet evidence-based treatments for this population are limited. Understanding these individuals' perspectives is critical for developing effective interventions. We conducted qualitative interviews with 17 college-aged individuals (18-24 years old) with a recent (≤10 weeks) concussion and at least mild anxiety (≥5 on the GAD-7 questionnaire) to understand the life impact of their concussion. We identified 5 themes: (1) disruption to daily activities (e.g., reduced participation in hobbies and physical activity); (2) disruption to relationships (e.g., reduced social engagement, feeling dismissed by others, stigma, and interpersonal friction); (3) disruptions in school/work (e.g., challenges participating due to light sensitivity, cognitive or sleep disturbance, and related emotional distress); (4) changes in view of the self (e.g., feeling "unlike oneself", duller, or more irritable), and (5) finding "silver linings" after the injury (e.g., increased motivation). Concussions impact the lives of college-aged individuals with co-occurring anxiety in a broad range of domains, many of which remain largely neglected in standard concussion clinical assessment and treatment. Assessing and addressing these issues has the potential to limit the negative impact of concussion, promote recovery, and potentially help prevent persistent concussion symptoms in this at-risk population.

Assessing patient attitudes toward genetic testing for hereditary hematologic malignancy.

Since 2003, more than 15 genes have been identified to predispose to hereditary hematologic malignancy (HHM). Although the yield of germline analysis for leukemia appears like that of solid tumors, genetic referrals in adults with leukemia remain underperformed. We assessed leukemia patients' attitudes toward genetic testing and leukemia-related distress through a survey of 1093 patients diagnosed with acute or chronic leukemia, myelodysplastic syndrome, or aplastic anemia. Principal component analysis (PCA) was used to analyze patient attitudes. Distress was measured through the Impact of Event Scale-Revised (IES-R). Exactly 19.8% of eligible respondents completed the survey. The majority reported interest in (77%) or choosing to have (78%) genetic testing for HHM. Slightly over half identified worry about cost of genetic testing (58%) or health insurance coverage (61%) as possible barriers. PCA identified relevant themes of interest in genetic testing, impact on leukemia treatment, discrimination and confidentiality, psychosocial and familial impacts, and cost of testing. The majority reported low distress. Leukemia patients report high interest in genetic testing, few barriers, and relatively low distress.

The Recovering Together study protocol: A single-blind RCT to prevent chronic emotional distress in patient-cargiver dyads in the Neuro-ICU.

INTRODUCTION: Patients admitted to the Neuroscience Intensive Care Unit (Neuro-ICU) with acute neurological illnesses (ANI; e.g., stroke, tumor, TBI) and their informal caregivers experience high rates of anxiety, depression, and posttraumatic stress. To address this need, we previously developed the Recovering Together (RT) dyadic intervention to help prevent chronic emotional distress in both patients and caregivers. Currently, we are conducting a fully-powered, single-blind randomized clinical trial (RCT) to evaluate the efficacy of RT versus an attention matched health education control. Here, we describe the protocol and current status of this RCT. METHODS: We aim to recruit 194 at risk patient-caregiver dyads from the Neuro-ICU at MGH. Eligible dyads include patients diagnosed with ANI, cognitively intact, at least one partner endorses emotional distress (on Hospital Anxiety and Depression Scale), English speaking, age 18 or older. Dyads are randomized to the intervention (RT-1) or control condition (RT-2) (both six sessions). RT-1 teaches resiliency (e.g., coping, mindfulness) and interpersonal skills. RT-2 provides education on health-related topics (e.g., stress, self-care, adhering to medical recommendations). Blinded research assistants collect measures at baseline, post-intervention, and three months follow-up. We will conduct mixed linear, mediation, and actor-partner interdependence models to examine changes in dyads' outcomes across time. RESULTS: We have recruited 41 dyads and aim to recruit 194 total. DISCUSSION: If successful, we plan to test RT in a large-scale, multisite hybrid effectiveness-implementation study in Neuro-ICUs across the country. Enhancing psychosocial supports for patients and families could improve health outcomes, healthcare efficiency, and the culture of these units.

Conceptualization of Participation: A Qualitative Synthesis of Brain Injury Stakeholder Perspectives.

Background: The return to participation in meaningful life roles for persons with acquired brain injury (pwABI) is a goal shared by pwABI, their families, clinicians, and researchers. Synthesizing how pwABI define participation will help to identify the aspects of participation important to pwABI and can inform a person-centered approach to participation outcome assessment. To-date, the qualitative synthesis approach has been used to explore facilitators and barriers of participation post-stroke, and views about participation among individuals with stroke in the UK. Objectives: This paper's objectives are to (1) conduct a scoping review of qualitative literature that defines and characterizes participation from the perspective of pwABI of any type, (2) synthesize how pwABI define and categorize participation, and (3) link the themes identified in the qualitative synthesis to the International Classification of Functioning, Disability, and Health (ICF) using standardized linking rules to enhance the comparability of our findings to other types of health information, including standardized outcome measures. Methods: We completed a scoping review of qualitative literature. Our search included PubMed, APA PsychInfo, CINAHL, and Embase databases and included articles that (1) had qualitative methodology, (2) had a sample ≥50% pwABI, (3) had aims or research questions related to the meaning, definition, perception, or broader experience of participation, and (4) were in English. Qualitative findings were synthesized using Thomas and Harden's methodology and resultant themes were linked to ICF codes. Results: The search identified 2,670 articles with 2,580 articles excluded during initial screening. The remaining 90 article abstracts were screened, and 6 articles met the full inclusion criteria for the qualitative synthesis. Four analytical themes emerged: (1) Essential Elements of Participation (2) How pwABI Approach Participation, (3) Where pwABI Participate, and (4) Outcomes of Participation. Each overarching theme included multiple descriptive themes. Conclusion: In this paper, we identified themes that illustrate key components of participation to pwABI. Our results provide insight into the complex perspectives about participation among pwABI and illustrate aspects of participation that should hold elevated importance for clinicians and researchers supporting participation of pwABI.

"Hidden gains"? Measuring the impact of mindfulness-based interventions for people with mild traumatic brain injury: a scoping review.

BACKGROUND: Mindfulness-based interventions can support recovery from mild traumatic brain injury (mTBI). Although measurement is a key determinant of outcomes, there is no comprehensive assessment of measurement approaches used to capture outcomes of these programs. Here, we review the domains targeted, measurement techniques used, and domains and techniques most affected by mindfulness-based interventions for mTBI. METHODS: We conducted a scoping review. After screening and full-text review, we included 29 articles and extracted data related to measurement domains, techniques, and results. RESULTS: We identified 8 outcome domains, each with multiple subdomains. The most common domains were cognitive symptoms and general health/quality of life. No quantitative studies directly assessed sleep, physical-function, or pain-catastrophizing. Self-report was the most common measurement technique, followed by performance-based methods. Coping, somatic symptoms, emotional symptoms, stress response, and domains of cognition (particularly attention) were the most frequently improved domains. Qualitative results described benefits across all domains and suggested novel areas of benefit. Biomarkers did not reflect significant change. CONCLUSIONS: Mindfulness-based interventions for mTBI impact a range of clinical domains and are best captured with a combination of measurement approaches. Using qualitative methods and expanding the breadth of outcomes may help capture underexplored effects of mindfulness-based interventions for mTBI.

A meta-synthesis of individual, interpersonal, and systemic factors impacting resilience after traumatic brain injury.

PURPOSE/OBJECTIVE: Traumatic brain injuries (TBIs) are increasingly common and a major cause of death and long-term disability. Many individuals experience chronic stressors and adverse health outcomes, emphasizing the importance of cultivating resilience, (defined herein as individual, social, and systemic components engaged in response to the stressors that allow individuals to "bounce back," or move forward adaptively after TBI). Patients' perceptions of factors influencing resilience are critical to guide interventions that meet their needs. Here we offer the first metasynthesis of factors influencing resilience after TBI using a Social Ecological model framework. Research Methods/Design: We preregistered our metasynthesis on PROSPERO (CRD42021233975) and followed PRISMA guidelines. We searched 4 electronic databases for qualitative studies from inception up until June 2021. We included qualitative studies detailing perspectives of individuals with a history of moderate-severe TBI. We excluded case studies and systematic reviews. After removal of duplicates, we identified 124 articles for screening. We reviewed 49 articles for full text eligibility and included 38 studies. We extracted study characteristics and data (e.g., author interpretations and relevant quotes) relating to factors influencing resilience. RESULTS: We synthesized findings using a Social Ecological model framework to guide thematic analysis. Persons with TBI identified barriers and facilitators to resilience at individual (e.g., physical and cognitive challenges, coping behaviors), interpersonal, (e.g., stigma and isolation) and systemic (e.g., access to resources, rehabilitation support) levels. CONCLUSIONS/IMPLICATIONS: Considering multifaceted factors at individual, interpersonal and systemic levels in clinical, research, and policy-setting contexts is important for cultivating resilience and optimizing recovery after TBI. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

"I Still Suffer Every Second of Every Day": A Qualitative Analysis of the Challenges of Living with Chronic Orofacial Pain.

Objective: Chronic orofacial pain is prevalent and debilitating. Psychological and social factors place a heavy burden on this population but are often overlooked. Here, we offer the first comprehensive qualitative conceptualization of the challenges of living with chronic orofacial pain through a biopsychosocial perspective to inform multifaceted care for this population. Design: We employed a qualitative thematic analysis of open text responses using a hybrid inductive-deductive approach and a biopsychosocial framework. Methods: Two hundred and sixty participants with chronic orofacial pain responded to an open-ended question: "What is the biggest challenge you face in managing your condition?" by typing their responses into a text box as part of an online survey. We mapped responses onto biomedical, psychological, and social themes (deductive) and concurrently identified findings within each theme that emerged directly from the data (inductive). Results: Subthemes within the biomedical theme included challenges with biomedical pain management, medication side effects, sensory triggers, physical symptoms of stress/tension, and biological functions and related activities of daily living. Subthemes within the psychological theme included anxiety, depression, emotional symptoms of stress, unpredictability/uncertainty of pain, and psychological and cognitive aspects of medication management. Subthemes within the social theme included social relational, experience with providers, socioeconomics and access to care, and roles and responsibilities. Conclusion: Chronic orofacial pain is associated with multifaceted challenges. Consideration of individuals' experiences of biomedical, psychological, and social challenges in the assessment, referral, and treatment of chronic orofacial pain holds the potential to promote more comprehensive, patient-centered care for this population.

Psychosocial Predictors of Chronic Musculoskeletal Pain Outcomes and their Contextual Determinants Among Black Individuals: A Narrative Review.

Black communities are disproportionally affected by Chronic Musculoskeletal Pain (CMP), but little is known about the psychological predictors of CMP outcomes and their contextual determinants among Black individuals. To address this gap, we conducted a narrative review of extant literature to (1) report the major conceptual models mentioned in prior work explaining the link between contextual determinants and psychological responses to pain among Black individuals with CMP; and (2) describe psychological factors related to CMP outcomes in this population that are highlighted in the literature. We searched 4 databases (APA PsycNet, PubMed/MEDLINE, Scopus, and Google Scholar) using the following search terms: musculoskeletal pain, chronic pain, mental health, psychological, coping, health disparities, contextual factors, conceptual models, psychosocial, Black, African American, pain, disability, and outcomes. We illustrate 3 relevant conceptual models - socioecological, cumulative stress, and biopsychosocial - related to contextual determinants and several psychological factors that influence CMP outcomes among Black individuals: (1) disproportionate burden of mental health and psychiatric diagnoses, (2) distinct coping strategies, (3) pain-related perceived injustice and perceived racial/ethnic discrimination, and (4) preferences and expectations related to seeking and receiving pain care. The detailed clinical and research implications could serve as a blueprint for the providers and clinical researchers to address health disparities and improve care for Black individuals with CMP. PERSPECTIVE: This narrative review illustrates conceptual models explaining the link between contextual determinants and psychological responses to pain among Black individuals with chronic musculoskeletal pain. We discuss 3 relevant conceptual models - socioecological, cumulative stress, biopsychosocial -, and 4 psychological factors: disproportionate burden of mental health, distinct coping strategies, perceived injustice/discrimination, preferences/expectations.

Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases.

BACKGROUND: Neurodegenerative diseases (NDDs) are increasingly prevalent and radically alter the lives of individuals and their informal care partners (together called a dyad). As symptoms progress, dyads are at risk for elevated emotional distress and declines in relationship functioning and quality of life. Psychosocial interventions delivered to dyads early after diagnosis have successfully prevented chronic emotional distress across several chronic illnesses including cancer and acute brain injury. Dyads with NDD could benefit from such interventions, however, they are limited. Because NDDs have symptom profiles that are distinct from other chronic illnesses, they require a unique framework and interventions. Given the limited dyadic interventions and unified symptoms across NDDs, a transdiagnostic framework may help to enhance scalability and efficiency. To address this problem, we developed a transdiagnostic framework that cuts across NDD physical and emotional diagnoses to inform cost-effective and sustainable NDD dyadic interventions. METHODS: To develop this framework, we conducted: (1) a narrative review on dyadic adjustment and existent dyadic interventions for those with NDDs, and (2) integrated findings to develop our NDD transdiagnostic framework for dyadic interventions early after diagnosis. RESULTS: Findings revealed no existent dyadic interventions for NDDs delivered shortly after diagnosis. Among available interventions, all were delivered later in disease progression, thereby focusing on dyadic challenges at more advanced stages. In addition, although research emphasized the influence of individual, dyadic, and contextual factors on dyads' early adjustment to NDDs, no conceptual model has been developed. Informed by theory and current research, we introduce an NDD transdiagnostic framework for couples' early biopsychosocial adjustment. This framework includes NDD specific: contextual factors, illness-related factors, individual and dyadic stressors, adaptive coping strategies, and dyads' resources. CONCLUSIONS: Our NDD transdiagnostic framework can be used to inform early dyadic psychosocial interventions that cut across all NDDs. This approach has important implications for implementation and scalability.

One Diagnosis, Two Perspectives: Lived Experiences of Persons With Young-Onset Dementia and Their Care-Partners.

BACKGROUND AND OBJECTIVES: Young-onset dementias (YODs) are a set of progressive illnesses that are stressful for both persons with the diagnosis and their care-partners. Although the stressors differ based on their roles and individual experiences, both individuals are at risk for heightened emotional distress (e.g., depression and anxiety). Understanding the unique stressors for each partner and adaptive coping strategies to manage these stressors is important for informing individual and couples-based psychosocial interventions. RESEARCH DESIGN AND METHODS: We conducted open-ended individual interviews with persons with YOD (N = 12) and their care-partners (i.e., romantic partner; N = 17) over live video. We utilized a hybrid of deductive and inductive analysis techniques to extract individual-level themes and subthemes regarding stressors and adaptive coping strategies. RESULTS: Persons with YOD identified stressors including burden of YOD symptoms, loss of familial roles, resentment toward partner, isolation, and fear of the future. Care-partners identified stressors including managing their partners' symptoms, increased responsibilities, caregiving role, loss of intimacy, social isolation, and grief. For adaptive coping strategies, persons with YOD endorsed use of acceptance, promotion of independence, social support, and engaging in pleasurable activities. Care-partners endorsed value of learning about the diagnosis, using resources, optimism, social support, and self-care. DISCUSSION AND IMPLICATIONS: Findings highlight the unique experiences of persons with YOD and their care-partners. Identified themes can be used to inform role-specific psychosocial interventions for both individuals and couples coping with YOD.

Psychosocial profiles of risk and resiliency in neurofibromatoses: a person-centered analysis of illness adaptation.

OBJECTIVES: We sought to characterize psychosocial profiles of adaptation to neurofibromatosis (NF). METHODS: Participants (N = 224) completed self-report measures of psychosocial functioning, including risk (i.e., perceived stress, depression, anxiety) and resiliency (i.e., gratitude, optimism, coping, social support, mindfulness, empathy). We used a TwoStep hierarchical cluster analysis to determine clusters reflecting adaptation to NF. RESULTS: The analysis revealed two distinct groups, with the "Low Adaptation" group defined by high emotional distress and low resiliency (n = 130; 57% of participants), and the "High Adaptation" group defined by low emotional distress and high resiliency (n = 85; 37% of participants). Clusters differed significantly across nearly all criterion variables, as well as quality of life and pain interference. CONCLUSION: Both risk and resiliency factors are important for understanding psychosocial adaptation to NF. Findings suggest that clinical providers should prioritize screening and intervention methods targeting these variables to promote positive adaptation to NF. TRIAL REGISTRATION: ClinicalTrials.gov NCT03406208; https://clinicaltrials.gov/ct2/show/NCT03406208 (Archived by WebCite at http://www.webcitation.org/72ZoTDQ6h ).

In It Together: A Qualitative Meta-Synthesis of Common and Unique Psychosocial Stressors and Adaptive Coping Strategies of Persons With Young-Onset Dementia and Their Caregivers.

BACKGROUND AND OBJECTIVES: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs after a diagnosis of young-onset dementia (YOD). RESEARCH DESIGN AND METHODS: Five electronic databases were searched for qualitative articles from inception to January 2020. Qualitative data were extracted from included articles and synthesized across articles using taxonomic analysis. RESULTS: A total of 486 articles were obtained through the database and hand searches, and 322 articles were screened after the removal of duplicates. Sixty studies met eligibility criteria and are included in this meta-synthesis. Four themes emerged through meta-synthesis: (a) common psychosocial stressors experienced by both PWDs and CGs, (b) unique psychosocial stressors experienced by either PWDs or CGs, (c) common adaptive coping strategies employed by both PWDs and CGs, and (d) unique adaptive coping strategies employed by either PWDs or CGs. Within each meta-synthesis theme, subthemes pertaining to PWDs, CGs, and dyads (i.e., PWD and CG as a unit) emerged. DISCUSSION AND IMPLICATIONS: The majority of stressors and adaptive coping strategies of PWDs and CGs were common, supporting the use of dyadic frameworks to understand the YOD experience. Findings directly inform the development of resiliency skills interventions to promote adaptive coping in the face of a YOD diagnosis for both PWDs and CGs.

Couples' Experiences Managing Young-Onset Dementia Early in the COVID-19 Pandemic.

BACKGROUND AND OBJECTIVES: The coronavirus disease 2019 (COVID-19) pandemic created unexpected stressors for society and could disproportionately affect more vulnerable groups. One such group is couples facing young-onset dementias (YOD), who experience pandemic-induced stressors alongside ongoing YOD-related stressors (e.g., progressive symptoms, increased caregiving needs). Using a qualitative design, our objective was to characterize the experiences of couples living with YOD early in the COVID-19 pandemic and the impact on couples' 'relationships' and well-being. RESEARCH DESIGN AND METHODS: Couples (N = 23) of persons with YOD and their spousal caregivers participated in a 1 hour live video, joint interview during the early COVID-19 pandemic. We used a hybrid inductive-deductive coding approach to thematic analysis to extract findings within 2 a priori domains: (a) psychosocial stressors experienced during the early pandemic and (2) the impact of early pandemic stressors on couples' relationships and well-being. RESULTS: Thematic analyses revealed 6 main themes: (a) increased caregiving responsibilities, (b) increased uncertainty, (c) increased social isolation and disruptions in social support and medical care, (d) loss of meaningful activities and routines, (e) changes to the couple's relationship, and (f) heightened emotional distress. DISCUSSION AND IMPLICATIONS: The COVID-19 pandemic exacerbated relationship strain and distress among couples managing YOD. This population may face negative outcomes due to the dual impact of YOD- and pandemic-related stressors. It is imperative to provide timely resources and psychosocial support to couples facing YOD to mitigate the negative impact of such stressors on individual health and well-being and the couples' relationship together.