Peer-Delivered Interventions for Caregivers in the ICU with a Focus on Severe Acute Brain Injury: A Scoping Review.

Approximately 50% of family caregivers of patients with severe acute brain injury (SABI) admitted to intensive care units experience clinically significant anxiety, depression, and posttraumatic stress. Peer-delivered interventions may be a sustainable way to provide social connection, emotional support, and evidence-based coping skills for family caregivers of patients with SABI to improve their mental health and well-being. The aim of this scoping review was to examine existing peer-delivered interventions for family caregivers of adult patients with SABI admitted to neurocritical and other critical care units. We set broad inclusion criteria and identified ten examples of peer-delivered interventions for family caregivers of adult patients with critical illness, of which only two were tailored to the needs of caregivers for patients who had experienced SABI. Our results indicated that (1) very few examples of peer-delivered interventions for this population exist, (2) all existing examples are professional-led (e.g., nurse-led) multifamily support groups, and (3) existing interventions demonstrate mixed results. Future research is needed to develop and evaluate peer-delivered interventions, including testing different models of peer-delivered interventions (e.g., one-to-one peer mentorship), programs that provide skills and support to caregivers after discharge, and skills-based formats that are tailored to the unique needs of SABI caregivers.

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.

Does gender moderate resiliency variables and posttraumatic stress symptoms in informal caregivers of neurocritical care patients? An exploratory study.

We examined gender differences between resiliency factors (i.e. mindfulness, self-efficacy, coping, intimate care, and caregiver preparedness) and posttraumatic stress symptoms (PTSS) in informal caregivers of patients in the neuroscience intensive care unit (Neuro-ICU). Ninety-two informal caregivers were enrolled during patients' hospitalization and completed resiliency measures at baseline, and a PTSS measure at baseline, 3 and 6 months. We conducted five ANCOVAs to explore gender and resiliency on PTSS. No significant main effects of gender on PTSS were observed across time points. However, main effects were seen for resiliency on PTSS at baseline for informal caregivers with high (vs. low) mindfulness, coping, and self-efficacy. Gender moderated the association between mindfulness and PTSS (i.e. high mindfulness at baseline was associated with lower PTSS in males compared to females at 3 months) and intimate care and PTSS (high intimate care at baseline was associated with lower PTSS in males than females at 6 months; high intimate care at baseline for females was associated with lower PTSS at 6 months than females with low intimate care). Overall, we observed associations among informal caregivers' gender, resiliency, and PTSS, with males particularly benefitting from mindfulness and intimate care. These findings hold value for future inquiry into gender differences in this population with possible clinical implications.

"Gender-based Violence (GBV) and HIV, they are like sister and brother": barriers and facilitators to GBV screening and referral in public HIV treatment settings in Uganda.

BACKGROUND: People living with HIV are vulnerable to gender-based violence (GBV), which can negatively impact HIV treatment outcomes. National guidelines in Uganda recommend GBV screening alongside HIV treatment services. We explored barriers and facilitators to providers implementing GBV screening and referral in public antiretroviral therapy (ART) clinics in Uganda. METHODS: We conducted qualitative in-depth interviews. Providers were purposively sampled from 12 ART clinics to represent variation in clinical specialty and gender. We used the Theoretical Domains Framework to structure our deductive analysis. RESULTS: We conducted 30 in-depth interviews with providers implementing GBV screening and/or referral. Respondents had a median age of 36 (IQR: 30, 43) years and had been offering post-GBV care to clients for a median duration of 5 (4, 7) years. 67% of respondents identified as female and 57% were counselors. Facilitators of GBV screening and referral included providers having access to post-GBV standard operating procedures and screening tools, trainings offered by the Ministry of Health, facility-sponsored continuing medical education units and support from colleagues. Respondents indicated that referrals were uncommon, citing the following barriers: negative expectations regarding the quality and quantity of referral services; lack of financial resources to support clients, facilities, and referral partners throughout the referral process; and sociocultural factors that threatened client willingness to pursue post-GBV support services. CONCLUSIONS: Findings from this evaluation support the refinement of GBV screening and referral implementation strategies that leverage facilitators and address barriers to better support individuals living with HIV and who may have heightened vulnerability to GBV.

How Do Orthopaedic Providers Conceptualize Good Patient Outcomes and Their Barriers and Facilitators After Acute Injury? A Qualitative Study.

BACKGROUND: Good clinical outcomes in orthopaedics are largely dictated by the biomedical model, despite mounting evidence of the role of psychosocial factors. Understanding orthopaedic providers' conceptualizations of good clinical outcomes and what facilitates and hinders them may highlight critical barriers and opportunities for training providers on biopsychosocial models of care and integrating them into practice. QUESTIONS/PURPOSES: (1) How do orthopaedic trauma healthcare providers define good clinical outcomes for their patients after an acute orthopaedic injury? (2) What do providers perceive as barriers to good outcomes? (3) What do providers perceive as facilitators of good outcomes? For each question, we explored providers' responses in a biopsychosocial framework. METHODS: In this cross-sectional, qualitative study, we recruited 94 orthopaedic providers via an electronic screening survey from three Level I trauma centers in geographically diverse regions of the United States (rural southeastern, urban southwestern, and urban northeastern). This study was part of the first phase of a multisite trial testing the implementation of a behavioral intervention to prevent chronic pain after acute orthopaedic injury. Of the 94 participants who were recruited, 88 completed the screening questionnaire. Of the 88 who completed it, nine could not participate because of scheduling conflicts. Thus, the final sample included 79 participants: 48 surgeons (20 attendings, 28 residents; 6% [three of 48] were women, 94% [45 of 48] were between 25 and 55 years old, 73% [35 of 48] were White, and 2% [one of 48] were Hispanic) and 31 other orthopaedic professionals (10 nurse practitioners, registered nurses, and physician assistants; 13 medical assistants; five physical therapists and social workers; and three research fellows; 68% [21 of 31] were women, 97% [30 of 31] were between 25 and 55 years old, 71% [22 of 31] were White, and 39% [12 of 31] were Hispanic). Using a semistructured interview, our team of psychology researchers conducted focus groups, organized by provider type at each site, followed by individual exit interviews (5- to 10-minute debriefing conversations and opportunities to voice additional opinions one-on-one with a focus group facilitator). In each focus group, providers were asked to share their perceptions of what constitutes a "good outcome for your patients," what factors facilitate these outcomes, and what factors are barriers to achieving those outcomes. Focus groups were approximately 60 minutes long. A research assistant recorded field notes during the focus groups to summarize insights gained and disseminate findings to the broader research team. Using this procedure, we determined that thematic saturation was reached for all topics and no additional focus groups were necessary. Three independent coders identified the codes of good outcomes, outcome barriers, and outcome facilitators and applied this coding framework to all transcripts. Three separate data interpreters collaboratively extracted themes related to biomedical, psychological, and social factors and corresponding inductive subthemes. RESULTS: Although orthopaedic providers' definitions of good outcomes naturally included biomedical factors (bone healing, functional independence, and pain alleviation), they were also marked by nuanced psychosocial factors, including the need for patients to recover from psychological trauma associated with injury and feel heard and understood-not just as outcome facilitators, but also as key outcomes themselves. Regarding perceived barriers to good outcomes, providers interwove psychological and biomedical factors (for example, "if they're a smoker, if they have depression, anxiety…") and discussed how psychological dysfunction (for example, maladaptive avoidance or fear of reinjury) can limit key behaviors during recovery (such as adherence to physical therapy regimens). Unprimed, providers also cited resiliency-related terms from psychological research, including (low) "self-efficacy," "catastrophic thinking," and (lack of) psychological "hardiness" as barriers. Regarding perceived facilitators of good outcomes, various social and socioeconomic factors emerged, including a biosocial connection between recovery, social support, and "privilege" (such as occupation or education). These perspectives emerged across sites and provider types. CONCLUSION: Although the biomedical model prevails in clinical practice, providers across all sites, in various roles, defined good outcomes and their barriers and facilitators in terms of interconnected biopsychosocial factors without direct priming to do so. Thus, similar Level I trauma centers may be more ready to adopt biopsychosocial care approaches than initially expected. CLINICAL RELEVANCE: Providers' perspectives in this study aligned with a growing body of research on the role of biomedical and psychosocial factors in surgical outcomes and risk of transition to chronic pain. To translate these affirming attitudes into practice, other Level I trauma centers could encourage leaders who adopt biopsychosocial approaches to share their perspectives and train other providers in biopsychosocial conceptualization and treatment.

What Are Orthopaedic Healthcare Professionals' Attitudes Toward Addressing Patient Psychosocial Factors? A Mixed-Methods Investigation.

BACKGROUND: Integrating psychosocial resources into orthopaedic clinics can reduce psychological distress and opioid use after injury, enhance functional outcomes, and increase patient satisfaction with care. Establishing referral pathways for connecting orthopaedic patients with psychosocial resources requires the active collaboration and buy-in of orthopaedic healthcare professionals. Designing and disseminating psychosocial training materials for orthopaedic healthcare professionals requires a nuanced understanding of orthopaedic healthcare professionals' current attitudes toward addressing psychosocial factors, including any stigma and misconceptions about mental health that exist. QUESTIONS/PURPOSES: (1) What are orthopaedic healthcare professionals' attitudes toward addressing patient psychosocial factors, and how are they related? (2) How do orthopaedic healthcare professionals' beliefs, reasonings, and experiences help to explain these attitudes? (3) How do attitudes differ between physicians and nonphysician healthcare professionals? METHODS: In this multisite, mixed-methods study (that is, a study collecting both quantitative and qualitative data), our team of psychology researchers conducted qualitative focus groups over secure live video with 79 orthopaedic healthcare professionals at three geographically diverse Level I trauma centers. We approached all orthopaedic healthcare professionals within the three trauma centers to participate in the study to collect as many diverse perspectives as possible. Eighty-four percent (79 of 94) of the professionals we approached participated in qualitative data collection (the group of professionals comprised 20 attending surgeons; 28 residents; 10 nurse practitioners, registered nurses, and physician assistants; 13 medical assistants; five physical therapists and social workers; and three research fellows). We also asked participants to complete self-report items that assessed their attitudes toward addressing patients' psychosocial factors (research question 1). The different attitudes identified through the quantitative measurement served as a priori defined themes within which our two independent coders organized the qualitative data and identified beliefs and experiences that explained attitudes (research question 2). We used both quantitative and qualitative data to assess differences between surgeons and residents and nonphysician healthcare professionals (research question 3). RESULTS: We quantitatively identified six underlying attitudes toward addressing psychosocial factors: professional confidence, perceived resource availability, fear of offending patients, fear of negative patient reactions, blame toward patients, and professional role resistance. We observed a strong quantitative correlation between the attitudes of professional confidence and perceived resource availability, and qualitative data revealed how healthcare professionals' willingness to discuss psychosocial issues with patients is shaped by their perception of psychosocial resources available for orthopaedic patients, as well as their perception of their own skills and tools to navigate these conversations. Quantitative data suggested that surgeons and residents endorse higher blame toward patients for psychosocial factors (medium effect size; p = 0.04), which is a stigmatizing attitude that serves as a barrier to integrating psychosocial resources into orthopaedic settings. CONCLUSION: The varying levels of confidence orthopaedic healthcare professionals reported with respect to the topic of discussing psychosocial factors and the misconceptions they endorse regarding psychosocial factors (such as blame toward patients) highlight the need for more specific education for orthopaedic healthcare professionals to help equip them with skills to raise and discuss psychosocial factors with patients in an empathic and destigmatizing manner. CLINICAL RELEVANCE: The strong relationship observed between the attitudes of professional confidence and perceived resource availability suggests that expanding the provision of psychosocial resources in orthopaedic settings and establishing specific, efficient referral processes to connect patients with psychosocial resources will in turn increase orthopaedic healthcare professionals' confidence discussing psychosocial issues with patients.

A race against time: couples' lived diagnostic journeys to young-onset dementia.

PURPOSE: Young onset dementias (YOD) - typically defined by symptom onset before age 65 - are frequently overlooked in medical and community settings. Persons with YOD and their spouses face logistical and emotional challenges on their journey to a diagnosis (e.g. uncertainty about symptoms, lack of medical knowledge, emotional distress). An in-depth understanding of couples' experiences before and immediately following a YOD diagnosis is warranted to inform early psychosocial services for couples. METHODS: We utilized dyadic qualitative semi-structured interviews (N = 23) to better understand the nuances of couples' pre-diagnostic and diagnostic experiences with YOD. We used a hybrid of deductive and inductive analytic strategies to identify couple-level themes. RESULTS: Fifteen couple-level themes were extracted within four domains: (1) early indicators of symptoms, (2) obtaining a diagnosis, (3) experiences with health care providers, and (4) emotional reactions to the diagnosis. Couples expressed difficulties communicating about early symptoms, receiving accurate and timely diagnostic information, and managing multiple emotions. They described the value of working together to manage care, gain information, establish positive relationships with providers, and promote adjustment. CONCLUSION: Findings highlight the shared experiences of couples during the early stages of YOD, including the importance of strong communication with each other and providers. Early and accessible psychosocial services that help couples cope with and communicate about individual and shared stressors are warranted.

A Call for Interdisciplinary Collaboration to Promote Musculoskeletal Health: The Creation of the International Musculoskeletal Mental and Social Health Consortium (I-MESH).

Despite increasing recognition of psychosocial factors in musculoskeletal conditions, its impact on reducing the global toll of musculoskeletal symptoms has been only incremental. It is time to bring together clinicians and researchers with heterogeneous backgrounds, unified by a commitment to reduce the global impact of musculoskeletal illness by addressing mental and social health factors. In 2020, we initiated the International Musculoskeletal Mental and Social Health Consortium. Our current key priority areas are: (1) Develop best practices for uniform terminology, (2) Understand barriers to mental and social health care for musculoskeletal conditions, (3) Develop clinical and research resources. The purpose of this paper is to render a call to interdisciplinary collaboration on the psychological aspects of musculoskeletal health. We believe this international interdisciplinary collaboration is pivotal to the advancement of the biopsychosocial model of musculoskeletal care and has the potential to improve the health of individuals with musculoskeletal conditions globally.

Associations Between Baseline Total PTSD Symptom Severity, Specific PTSD Symptoms, and 3-Month Quality of Life in Neurologically Intact Neurocritical Care Patients and Informal Caregivers.

BACKGROUND: The objective is to pilot test the feasibility of assessing severity of posttraumatic stress disorder (PTSD) symptoms, as well as specific lower-order PTSD symptoms, experienced during neurological intensive care unit (neuro-ICU) admission and their relationship with 3-month quality of life (QoL) scores in multiple domains (i.e., physical, psychological, social, and environmental) in both patients and caregivers. METHODS: Between 2015 and 2016, we enrolled neurologically intact patients and informal caregivers of patients who reported demographics and PTSD symptoms (PTSD Checklist-Specific; PCL-S) during neuro-ICU admission and completed a QoL assessment (World Health Organization Quality of Life; WHOQOL-BREF) 3 months later. Clinical data were extracted from medical records. We ran two bivariate correlation matrices among PTSD symptom dimensions in patients and caregivers. Then, we used multiple linear regression to examine the prospective association of total PCL-S scores with each QoL domain in both patients and caregivers after adjusting for clinically important variables. Next, we explored differential associations between the 4 PTSD symptom dimensions and each QoL domain in both patients and caregivers, adjusting for sex and age. RESULTS: A total of 70 patients (45.7% women, 84.3% white, mean age 52.08 years) and 64 caregivers (64.1% women, 90.6% white, mean age 53.12 years) were included. PTSD symptom dimensions were moderately strongly correlated among patients (r = 0.65-0.79, p < 0.001) and caregivers (r = 0.55-0.78, p < 0.001). For both patients and caregivers, greater PTSD symptom severity was prospectively associated with lower QoL in all domains (ß = - 0.289 to - 0.622; p < 0.05). Our exploratory analysis revealed that greater numbing symptoms were associated with lower psychological QoL in patients (ß: - 0.397, p = 0.038), and lower physical (ß: - 0.409, p = 0.014), psychological (ß: - 0.519, p = 0.001), and social QoL (ß: - 0.704, p < 0.001) in caregivers. Greater re-experiencing symptoms were associated with lower physical QoL in both patients (ß: - 0.422, p = 0.047) and caregivers (ß: - 0.4, p = 0.041). CONCLUSIONS: Our preliminary results indicated that greater severity of PTSD symptoms, and specifically numbing and re-experiencing symptoms, experienced by patients and caregivers during neuro-ICU admission was predictive of worse 3-month QoL. Continued study is needed to identify treatment targets for PTSD and QoL in this population.

Does a Patient's Approach to Achieving Goals Influence His or Her Recovery Trajectory After Musculoskeletal Illness?

BACKGROUND: The regulatory focus theory posits that, in general, people tend to be predominantly "promotion focused" or "prevention focused", and each individual's values and motivations influence which approach he or she may use when pursuing personal goals. People who are primarily promotion focused mostly see goals as opportunities to gain or advance (that is, play to win); people who are prevention focused mostly see goals as opportunities to stay safe (that is, play not to lose). Understanding the role of regulatory focus in the recovery of patients with orthopaedic conditions could provide novel insight into how surgeons can best communicate with patients to improve how they recover from illness or injury. QUESTION/PURPOSE: Are improvements in pain intensity and disability over 6 months associated with a patient's levels of promotion focus or prevention focus? METHODS: In this longitudinal observational study, we enrolled 144 patients with an upper extremity orthopaedic illness at a tertiary teaching hospital and followed them for 6 months. At baseline, patients completed validated self-reported measures of regulatory focus (Regulatory Focus Questionnaire), pain (Numerical Rating Scale), disability (the QuickDASH), and demographics. Assessments were repeated 6 months later, with 76% (110 of 144) of patients completing follow-up assessments. We examined whether regulatory focus was associated with recovery outcomes (level of pain and disability at 6 months). The patient's regulatory focus was graded as two numerical scores on separate promotion-focus and prevention-focus continuums. Each individual received a score on promotion focus and one on prevention focus.. RESULTS: An individual's level of promotion (ΔR = 0.021; p = 0.03; small effect size), but not his or her level of prevention (ΔR = 0.003; p = 0.35; negligible effect size), was associated with improvement in disability over a 6-month period (R = 0.61; p < 0.001). Patients with high promotion (n = 20, b = 0.284; p = 0.001) had the greatest improvements in disability after 6 months compared with patients with moderate (n = 73, b = 0.422; p < 0.001) or low (n = 17, b = 0.561; p < 0.001) promotion. The levels of promotion (b = -0.22; p = 0.09) and prevention (b = -0.04; p = 0.65) were not associated with pain over time. CONCLUSIONS: To support improvements in disability for patients with upper extremity orthopaedic conditions, surgeons' communication strategies, including explanations of diagnoses and recovery trajectories, should focus on increasing patients' level of promotion (for example, by emphasizing gains and promoting positive thinking), rather than prevention (for example, by providing reassurance and problem-solving what might go wrong). LEVEL OF EVIDENCE: Level II, prognostic study.

Implementation of gender-based violence screening guidelines in public HIV treatment programs: A mixed methods evaluation in Uganda.

BACKGROUND: HIV and gender-based violence (GBV) intersect to threaten population health. The Uganda Ministry of Health recommends routine GBV screening alongside HIV care but evidence detailing its implementation in HIV care settings is limited. We evaluated screening practices in public HIV clinics to generate evidence supporting GBV screening optimization. METHODS: To evaluate GBV screening implementation in antiretroviral therapy (ART) clinics, we extracted client data from GBV registers at 12 public ART clinics in Uganda (January 2019-December 2021). We concurrently evaluated perceptions of GBV screening/referral practices by conducting in-depth qualitative interviews with providers (N = 30) and referral partners (N = 10). We contextualized quantitative findings with interview data which were analyzed using a thematic analysis approach. RESULTS: During the evaluation period, >90% of providers in participating health facilities implemented GBV screening. Among 107,767 clients served in public ART clinics, providers identified 9,290 (8.6%) clients who experienced past-year physical, sexual and/or emotional GBV of whom 86% received counseling and 19% were referred to support services-most commonly to legal services. Key factors influencing GBV screening implementation included awareness of screening guidelines; client volume; and client's level of engagement in HIV care. Providers and referral partners identified important benefits to clients (e.g., pursuit of justice and removal from violent environments) when referrals were successful. Key factors influencing referrals included financial constraints that limited referral partners' ability to provide services at no cost to clients and socio-cultural norms that inhibited client willingness to pursue support services. CONCLUSIONS: GBV screening implementation in ART clinics supports identification and referral of clients exposed to violence. The effectiveness of GBV screening may be limited by socio-cultural factors that inhibit client capacity to pursue referrals and fragmented and resource-constrained referral networks. Providers and referral partners identified allocating funds to support referrals and collaborative networking meetings as important opportunities for strengthening GBV referrals.

Integrating Psychosocial Care into Orthopedic Settings: A Qualitative Study of Provider Perspectives.

Introduction: Approximately 50% of persons with orthopedic injuries experience psychosocial distress (e.g., depression, anxiety), which can predict chronic pain and disability. Offering psychosocial services in orthopedic settings can promote patient recovery. This study explores health care professionals' perceptions of and recommendations regarding integrated psychosocial care for orthopedic settings. Methods: We conducted 18 semi-structured focus groups with 79 orthopedic health care professionals (e.g., surgeons, residents, nurses) across three Level I Trauma Centers. This secondary data analysis used the evidence-based Rainbow Model of Integrated Care framework to structure hybrid inductive-deductive qualitative data analysis. Results: Orthopedic health care professionals identified potential benefits to psychosocial service integration across all dimensions of integration (i.e., clinical, professional, organizational, system, functional, and normative). These benefits included increased patient satisfaction with care, decreased burden on medical providers to manage patient distress, and decreased healthcare utilization costs. They also identified barriers (e.g., fast-paced clinic flow, mental health stigma) and offered recommendations to address barriers across dimensions of integration. Conclusion: Integrated psychosocial care for orthopedic trauma patients has the potential to improve patient recovery and long-term physical and mental health outcomes. This work identifies strategies to inform the development and implementation of initiatives to integrate psychosocial services within orthopedic settings.

"No One Truly Understands What We Go through and How to Treat It": Lived Experiences with Medical Providers among Patients with Orofacial Pain.

Orofacial pain affects 10-15% of adults, yet treatments are limited. The gaps in care are frustrating for both patients and providers and can negatively impact patient-provider interactions. These interactions are key because they impact patient-reported outcomes and satisfaction with care. PURPOSE: Our study aims to understand the nuanced experiences with medical providers among patients with orofacial pain. METHODS: In a cross-sectional survey, 260 patients provided written responses describing their experiences with medical providers. Using an inductive-deductive approach to thematic analysis, we identified themes and subthemes and organized them into four domains based on the Patient-Centered Model of Communication. RESULTS: Patients reported feeling hopeless about treatment options, frustrated with lack of provider knowledge, disappointed in ineffective care, and stigmatized and dismissed by providers. Patients also said they learned to advocate for their health, were grateful for effective care, and felt lucky when providers listened and showed compassion. Patients identified key barriers that interfere with care (e.g., insurance, transportation, limited providers, lack of team coordination). CONCLUSIONS: Findings can help inform training programs and psychoeducation that target patient-provider communication to improve patient-reported outcomes, the quality of care delivered, and health care utilization and costs.

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.

A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers.

BACKGROUND AND OBJECTIVES: Young onset dementias (young onset dementia) produce a myriad of stressors for persons with young onset dementia and their caregivers, yet there is a critical shortage of supportive services that address their needs. To develop such services, it is necessary to first comprehensively understand persons' with young onset dementia and their caregivers' service preferences. Therefore, we conducted a meta-synthesis to integrate and summarize qualitative data on persons' with young onset dementia and caregivers' preferences for supportive services for young onset dementia, defined as support provided by medical providers, psychosocial interventions, and any other resources/services provided to promote positive adjustment in persons with young onset dementia and their caregivers. RESEARCH DESIGN AND METHODS: We searched five electronic databases for qualitative articles from inception to January 2020. We extracted and synthesized data from eligible articles using thematic analysis. After removal of duplicates, we screened 219 articles identified through database and hand searches. FINDINGS: Forty-three studies met our inclusion criteria. We extracted findings from these 43 studies on preferences within three a priori defined domains: 1) general characteristics of supportive services, 2) format and modality of supportive services, and 3) content for supportive services. Persons with young onset dementia and caregivers predominantly expressed common preferences, with some unique preferences based on their specific roles within the partnership. DISCUSSION AND IMPLICATIONS: Persons with young onset dementia and their caregivers endorsed largely overlapping preferences, including having direct contact with providers and the ability to participate together in programs that have content and skills relevant to their specific needs and challenges. Findings can directly inform the format, content, and procedures of supportive services for persons with young onset dementia and their caregivers.

Psychosocial treatment preferences of persons living with young-onset dementia and their partners.

Persons living with young-onset dementia and their partners often experience elevated emotional distress as they cope with an unexpected progressive illness during an active life stage (typically ages 45-64 years). Despite their heightened emotional distress, psychosocial resources are both limited and lack the specificity to meet the unique needs of both partners. Our aim was to gain an in-depth understanding of the psychosocial treatment preferences of persons with young-onset dementia and their partners-an important first step in developing a tailored intervention. We conducted semi-structured dyadic interviews with persons with young-onset dementia and their partners (N = 23) and used a hybrid deductive-inductive approach to thematic analysis. We identified 12 themes across four domains: (1) perceptions of available and lacking resources, (2) preferences for program content, (3) preferences for program format, and (4) barriers and facilitators to participation. Couples indicated there is a lack of specific and family-oriented resources, which can create more stress and relationship strain. Couples endorsed support for a virtual, dyadic intervention delivered shortly after diagnosis focused on providing tools to cope with difficult emotions and symptom progression and enhance communication and meaningful daily living. They also identified potential barriers to program participation and offered suggestions to promote engagement. By using a qualitative approach, we were able to gather nuanced information that can be used to directly inform a feasible, accepted, and person-centered psychosocial intervention for persons with young-onset dementia and their partners.

Are Surgeons' Tendencies to Avoid Discomfort Associated with Attitudes and Beliefs Toward Patient Psychosocial Factors?

Background: Orthopedic surgeons are sometimes hesitant to assess and address psychosocial factors. Surgeon-specific modifiable factors may contribute to surgeon attitudes and beliefs regarding the mental and social aspects of illness. A better understanding of these factors could help inform interventions to support surgeons and improve patient outcomes. We aimed to investigate whether orthopedic surgeons' self-reported compassion, perceived stress, and experiential avoidance are independently associated with various surgeon attitudes and beliefs regarding psychosocial aspects of health. Methods: This is a cross-sectional study of 165 members of the Science of Variation Group (SOVG). Surgeons completed measures of compassion, stress, experiential avoidance, and demographics. They answered questions addressing attitudes and beliefs regarding psychosocial aspects of care, which were condensed to the following 6 dimensions through factor analysis: (1) confidence, (2) perceived resource availability, (3) blame towards patients, (4) fear of offending patients, (5) professional role resistance, and (6) fear of negative patient reactions. We performed 6 multivariable hierarchical regression analyses to determine whether self-reported compassion, perceived stress, and experiential avoidance were associated with aspects of surgeons' attitudes and beliefs regarding psychosocial care. Results: After accounting for the influence of relevant covariates, experiential avoidance explained 2.9-6.6% of the variance (P-values .002 to .031) in all aspects of surgeon attitudes and beliefs regarding psychosocial care, except for perceived resource availability. Perceived stress and compassion toward others were not associated with any outcome variable. Conclusion: Targeting orthopedic surgeons' tendency to avoid discomfort (i.e., experiential avoidance) via supportive/educational programs may decrease barriers and increase their abilities to address psychosocial factors, resulting in improved patient outcomes.

Orthopedic Providers' Preferences for Education and Training on Psychosocial Clinical Research Initiatives: A Qualitative Investigation.

INTRODUCTION: Psychosocial factors (e.g., depression, anxiety) increase risk for chronic pain, disability, and other health complications following acute orthopedic traumatic injury. Orthopedic providers lack skills to address these factors. Education around psychosocial factors of recovery and psychosocial clinical and research initiatives could address this gap. The purpose of this study was to understand orthopedic trauma providers' preferences for the design and distribution of educational materials to facilitate psychosocial initiative implementation. METHODS: We conducted live-video, semi-structured focus groups with outpatient orthopedic trauma providers across three Level 1 Trauma Centers, using a hybrid inductive-deductive approach to analyze qualitative data and extract themes and subthemes characterizing providers' recommendations for appropriate psychosocial education. RESULTS: Four themes described providers' recommendations for receiving educational materials: (1) provide foundational knowledge and tools about psychosocial factors; (2) provide information regarding a psychosocial initiative's purpose and procedures; (3) leverage educational materials to maximize buy-in to psychosocial clinical research initiatives; and (4) deliver information concisely, clearly, and electronically. CONCLUSION: Orthopedic providers recommended ways to optimize design and dissemination of education on psychosocial care. Optimizing knowledge of psychosocial factors and clinical and research initiatives facilitates providers' ability to appropriately target the often-underdressed psychosocial component of recovery in orthopedics.

The Strategies for Quantitative and Qualitative Remote Data Collection: Lessons From the COVID-19 Pandemic.

The COVID-19 pandemic has necessitated a rapid shift to web-based or blended design models for both ongoing and future clinical research activities. Research conducted virtually not only has the potential to increase the patient-centeredness of clinical research but may also further widen existing disparities in research participation among underrepresented individuals. In this viewpoint, we discuss practical strategies for quantitative and qualitative remote research data collection based on previous literature and our own ongoing clinical research to overcome challenges presented by the shift to remote data collection. We aim to contribute to and catalyze the dissemination of best practices related to remote data collection methodologies to address the opportunities presented by this shift and develop strategies for inclusive research.

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.