Predictors of initial engagement with an asynchronous cognitive behavioral stress management website among older women with nonmetastatic breast cancer.

PURPOSE: Digital interventions, like websites, offer greater access to psychosocial treatments; however, engagement is often suboptimal. Initial use may be a target to "hook" participants. Few studies examine engagement with cognitive behavioral stress management (CBSM). We tested predictors of engagement in the first week of using a CBSM website among women with breast cancer (BC). METHODS: Older women (≥ 50 years) with nonmetastatic BC enrolled in an on-going trial (8/2016-4/2022, #NCT03955991) and were randomized to receive 10 synchronous, virtual CBSM group sessions immediately (n = 41) or after a 6-month waitlist (n = 34). All received simultaneous access to an asynchronous website, where supplemental videos and resources were released weekly. Engagement was tracked via breadth (features used) and depth (clicks within content). Multilevel modeling tested predictors of engagement (i.e., time, condition, age, daily stress, depression, race, ethnicity, disease stage). RESULTS: Breadth decreased over the first week of CBSM (b = -0.93, p < .01), and women with more advanced stage disease engaged with more breadth (b = 0.52, p < .01) and depth (b = 14.06, p < .01) than women with earlier stage disease. Non-Hispanic (b = -0.59, p = .03) and White (b = -0.97, p < .01) women engaged with more features. Cancer stage and intervention timing interacted. Women with more advanced cancer stage who received CBSM later engaged with the most depth (b = -11.73, p = .04). All other characteristics did not predict engagement. CONCLUSIONS: Disease stage, race, ethnicity, and intervention timing predicted engagement with a CBSM website in older BC patients. IMPLICATIONS FOR CANCER SURVIVORS: Delivering CBSM later in cancer treatment may mitigate competing demands. Fostering greater engagement in racial/ethnic minorities is needed.

Marital status and perceived stress in men with advanced prostate cancer: A randomized-controlled trial of cognitive behavioral stress management.

OBJECTIVE: Relationship status predicts numerous outcomes among medical populations. Few interventions evaluate the role of marital status on response to psychosocial treatment, and no such studies exist within advanced prostate cancer (APC). This study examined whether marital status modified the effect of a cognitive behavioral stress management (CBSM) intervention on perceived stress. METHODS: Men with APC (N = 190) were randomized to 10-week CBSM or a health promotion (HP) intervention (#NCT03149185). The Perceived Stress Scale assessed perceived stress at baseline and 12-month follow-up. Medical status and sociodemographics were captured at enrollment. RESULTS: Participants were mostly White (59.5%), non-Hispanic (97.4%), heterosexual (97.4%) men, 66.8% of whom were partnered. Neither condition nor marital status predicted perceived stress change at follow-up. However, a significant interaction was found between condition and marital status (p = 0.014; Cohen's f = 0.07), such that partnered men who received CBSM and unpartnered men who received HP reported greater reductions in perceived stress. CONCLUSION: This is the first study to assess the impact of marital status on psychosocial intervention effects among men with APC. Partnered men derived greater benefit from a cognitive-behavioral intervention and unpartnered men equally benefitted from a HP intervention. Further research is necessary to understand the mechanisms underlying these relationships.

Adaptation and virtual feasibility pilot of a mindfulness-based lifestyle program targeting modifiable dementia risk factors in older adults.

OBJECTIVES: We developed a group-based program (My Healthy Brain, MHB) to engage older adults at-risk for dementia in healthy lifestyles. We report on a two-part study to adapt MHB by incorporating mindfulness skills, using mobile health technology to monitor and reinforce behaviors, and delivering it via live video. METHODS: Participants were older adults (age ≥ 60) with subjective cognitive decline (SCD) and at least one lifestyle risk factor. In Aim 1 (n = 11, 2 groups), we conducted focus groups to obtain qualitative feedback on proposed adaptations. In Aim 2 (n = 10), we conducted a virtual open pilot with exit interviews to explore the feasibility and outcomes of the adapted MHB. RESULTS: Thematic analysis revealed: (1) barriers and facilitators to healthy lifestyles, (2) positive impressions of MHB, (3) interest in mindfulness skills, and (4) openness to study technologies. MHB met a-priori feasibility benchmarks and was associated with improvements in cognition, lifestyle (e.g. physical function), and proposed mechanisms (e.g. mindfulness). Exit interviews confirmed high feasibility and satisfaction. CONCLUSION: The integration of mindfulness, live video, and mobile health technologies was feasible and promising for improving healthier lifestyles. The results inform the next feasibility RCT of MHB to prepare for efficacy testing.Supplemental data for this article is available online at http://dx.doi.org/10.1080/13607863.2022.2032600.

Pain, cancer-related distress, and physical and functional well-being among men with advanced prostate cancer.

PURPOSE: Men with advanced prostate cancer (APC) experience high levels of pain, which contribute to poor psychosocial and functional outcomes. Cancer-related distress explains the relationship between pain severity and interference, yet specificity of distress characteristics (e.g., hyperarousal, intrusive, or avoidant symptoms) in explaining associations between pain experiences and well-being has not been explored within APC. This study examined men with APC entering a clinical trial and tested associations of baseline pain, cancer-related distress, and physical and functional well-being. METHODS: One hundred ninety men with APC enrolled in a randomized-controlled trial and were assessed prior to randomization. The McGill Pain Questionnaire assessed pain severity, and the Functional Assessment of Cancer Therapy-General captures physical and functional well-being. The Impact of Events Scale-Revised measured cancer-specific distress symptoms, including hyperarousal, avoidance, and intrusion symptoms. Controlling for age, cancer stage at diagnosis, income, education, and race/ethnicity, mediation models (SPSS PROCESS, model 4) tested whether cancer-specific distress accounted for the associations between pain severity and physical and functional well-being. RESULTS: Men were on average 68 years of age, White non-Hispanic, with stage IV cancer. Pain severity was related to poorer physical (p < .001) and functional well-being (p < .001). Associations between pain severity and physical and functional well-being were partially mediated by greater intrusive and hyperarousal symptoms but not avoidant symptoms. CONCLUSION: For men with APC, intrusive and hyperarousal symptoms may partially explain the relationship between pain severity and decrements in physical and functional well-being. APC pain management should attend to such distress symptoms, which may contribute to interference if left unaddressed. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03149185.

Effects of a randomized-controlled trial of cognitive behavioral stress management: Psychosocial adaptation and immune status in men with early-stage prostate cancer.

OBJECTIVE: Targets of intervention in cognitive behavioral stress management (CBSM), such as benefit finding (BF) and perceived stress management skills (PSMS), may counteract stress-related changes that impact the immune system. This study tested whether BF, PSMS, and optimism influence the effects of CBSM on immune status in men with prostate cancer. METHODS: Men with prostate cancer were randomized to receive CBSM or a psychoeducation (PE) control comparison (NCT05486754). Life Orientation Test-Revised assessed baseline optimism. The Benefit Finding Scale and Measure of Current Status measured BF and PSMS after CBSM. T-cells and T-helper cells captured immune status change at baseline and 6-months post-CBSM. MPlus and SPSS (PROCESS) tested condition effects and moderated mediation, controlling for covariates. RESULTS: 256 primarily middle-aged, White Non-Hispanic or Hispanic men enrolled. PSMS mediated CBSM effects on T-cell and T-helper cell percentage, such that T-cell and T-helper cell percentages were reduced in men in CBSM versus PE via PSMS. Optimism moderated this mediation with the mediating effect of PSMS only observed among men with average optimism versus those with low or high optimism. CONCLUSION: Baseline psychological characteristics, as well as limited specificity of immune measurement, could explain the conditional effects in this sample. TRIAL REGISTRATION: NCT05486754.

Investigating Strategies of Emotion Regulation As Mediators of Occupational Stressors and Mental Health Outcomes in First Responders.

The aim of this study was to investigate whether two emotion regulation strategies, expressive suppression or cognitive reappraisal, mediated the development of posttraumatic stress disorder (PTSD), major depression (MD), and generalized anxiety disorder (GAD) in first responders (FR) who experienced occupational stressors, using cross-sectional data. An aggregate of 895 first responders (M = 37.32, SD = 12.09, 59.2% male, 91.3% Caucasian) who were recruited through professional organizations and social media sites across North and South American states participated in an online Qualtrics survey. Bivariate correlation analyses demonstrated that occupational stressors were positively correlated with expressive suppression and each mental health outcome but were not significantly correlated with cognitive reappraisal. Mediation analyses demonstrated expressive suppression as a significant mediator between occupational stressors and PTSD, MD, and GAD symptoms, but not cognitive reappraisal. Even though these findings are in purview of a cross-sectional research design, they suggest the importance of practices that bolster first responders' ability to use more effective and adaptive emotion regulation strategies such as emotion expression, effective communication, and cognitive reappraisal that might help enhance psychological resilience.

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.

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.

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.

Emotional distress in neuro-ICU survivor-caregiver dyads: The recovering together randomized clinical trial.

OBJECTIVE: Emotional distress is common in both survivors and their informal caregivers following admission to a neuroscience intensive care unit (Neuro-ICU) and can negatively affect their individual recovery and quality of life. Neuro-ICU survivor-caregiver dyads can influence each other's emotional distress over time, but whether such influence emerges during dyadic treatment remains unknown. The present study involved secondary data analysis of Neuro-ICU dyads enrolled in a randomized clinical trial of a dyadic resiliency intervention, Recovering Together (RT), versus a health education attention placebo control to test dyadic similarities in emotional distress before and after treatment. METHOD: Data were collected from 58 dyads following Neuro-ICU admission. Emotional distress (depression, anxiety, and posttraumatic stress) was assessed at baseline, 6 weeks (postintervention), and 12 weeks later. Nonindependence within survivor-caregiver dyads was examined (i.e., correlations between cross-sectional symptoms and changes in symptoms over time); mutual influence of emotional functioning over time (i.e., "partner effects") was examined using cross-lagged path analyses. RESULTS: There were strong, positive cross-sectional correlations between survivor and caregiver distress at postintervention and follow-up and between changes in survivor and caregiver distress from baseline to postintervention and postintervention to follow-up. There were no partner effects. CONCLUSIONS: Neuro-ICU survivors and their informal caregivers show similar changes in emotional distress after treatment. These findings highlight the potential benefits of intervening on both survivor and caregiver distress following Neuro-ICU admission. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

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.

Psychosocial Stressors and Adaptive Coping Strategies in Couples After a Diagnosis of Young-Onset Dementia.

BACKGROUND AND OBJECTIVES: Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial support resources. RESEARCH DESIGN AND METHODS: We conducted live video dyadic interviews with couples (persons with YOD and spousal caregivers together; N = 23 couples). We transcribed interviews and coded data based on a hybrid deductive-inductive approach, with the structure of the coding framework informed by the stress and coping framework, and all codes derived from the data. We derived themes and subthemes related to psychosocial stressors and adaptive coping. RESULTS: We identified 5 themes related to psychosocial stressors: the impact of diagnosis, social and family relationships, changing roles and responsibilities, planning for an uncertain future, and couple communication and relationship strain. We identified 7 themes related to adaptive coping strategies: processing emotions and cultivating acceptance, promoting normalcy, efforts to preserve persons with YOD's independence and identity, collaborative and open communication, social support, meaning-making, humor, and positivity, and lifestyle changes and self-care. DISCUSSION AND IMPLICATIONS: We replicated several themes regarding stressors and adaptive coping strategies from prior YOD research and identified novel themes and subthemes related to dyadic stressors, sources of couples' relationship strain, and the ways in which couples effectively cope with YOD. Findings inform the development of dyadic interventions to reduce YOD-related distress for both persons with dementia and spousal caregivers.

Feasibility Randomized Controlled Trial of a Mind-Body Activity Program for Older Adults With Chronic Pain and Cognitive Decline: The Virtual "Active Brains" Study.

BACKGROUND AND OBJECTIVES: Chronic pain (CP) and cognitive decline (CD) are highly comorbid and debilitating among older adults. We iteratively developed Active Brains-Fitbit (AB-F), a group mind-body activity program aided by a Fitbit that is feasible and associated with improvements in physical, cognitive, and emotional functioning when delivered in-person to older adults with CP and CD. We adapted our intervention and methodology for remote delivery to bypass barriers to participation. Here we report on a feasibility randomized controlled trial of the virtual AB-F versus a Health Enhancement Program (HEP) educational control followed by qualitative exit interviews. RESEARCH DESIGN AND METHODS: Older adults (aged ≥60) with CP and CD (2 cohorts) completed 8 weeks of AB-F (n = 8) or HEP (n = 11). Study procedures were fully remote via live video. Quantitative analyses explored feasibility and acceptability markers and within-group improvements in outcomes. Qualitative analyses were primarily deductive using the Framework Method. RESULTS: AB-F met a priori set feasibility benchmarks, similar to our in-person pilot. Participation in AB-F was associated with preliminary signals of improvement in multimodal physical function, emotional function (anxiety), cognitive function, pain intensity, and coping (e.g., pain self-efficacy, catastrophizing). Participation in HEP was associated with smaller or negligible improvements. Exit interviews confirmed feasibility and satisfaction with our completely remote interventions and methodology. DISCUSSION AND IMPLICATIONS: Results provide evidence for the feasibility of our completely remote study and for initial markers of improvement after AB-F. The results will inform a fully powered remote efficacy trial. CLINICAL TRIAL REGISTRATION: NCT04044183.

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.

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.

Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis.

Introduction: Psychosocial care for people with neurofibromatosis (NF) is challenging to access. Therefore, we sought to develop a self-guided web-based treatment platform for people with NF based on the live video relaxation response resiliency program for NF (3RP-NF). Here we report on qualitative interviews with adult patients who participated in the 3RP-NF to: (a) understand participant perceptions of the 3RP-NF program and (b) gather feedback for a self-guided web-based treatment platform (i.e., NF-Web). Methods: We conducted individual semistructured interviews (N = 23; videoconferencing). We utilized both the Framework method and a hybrid deductive and inductive approach to analyze qualitative data. Results: We examined findings within the following themes for both 3RP-NF and NF-Web: (a) general attitudes, (b) barriers and facilitators, and (c) program-specific factors. Participants endorsed positive attitudes towards the 3RP-NF and NF-Web and described unique barriers and facilitators to each and provided suggestions regarding technology, NF-specific needs, and ways to promote social support virtually. Conclusions: This study highlights the importance of gathering participant feedback when designing novel, illness-specific interventions. In future studies, we aim to provide people with NF effective and efficient access to psychosocial support that matches their needs and life context. Results are informing NF-Web development.

Adaptation of a Live Video Mind-Body Program to a Web-Based Platform for English-Speaking Adults With Neurofibromatosis: Protocol for the NF-Web Study.

BACKGROUND: Neurofibromatosis (NF) is a rare genetic condition associated with lower but modifiable quality of life (QoL). Although a virtual live video program (Relaxation Response Resiliency Program for Neurofibromatosis [3RP-NF]; efficacy randomized controlled trial underway) that we created has been made available, ongoing barriers impede some patients from engaging in this intervention. A necessary next step is to develop a stand-alone web-based intervention that reduces barriers to accessing NF-specific psychosocial care. OBJECTIVE: First, we aim to develop a web-based platform (Neurofibromatosis-Web [NF-Web]) of our mind-body resiliency program (3RP-NF) through qualitative interviews with participants from an adult efficacy randomized controlled trial. Second, we aim to iteratively optimize the feasibility, acceptability, credibility, and satisfaction of the NF-Web platform through open pilot trials with participant exit interviews and explore quantitative outcomes within this sample. Here, we describe the protocol and study design, intervention, and analysis plan. METHODS: For aim 1, we will invite completers from our efficacy trial to participate in qualitative interviews. We will use data from these interviews to adapt the content of the live video program for asynchronous delivery and understand how to create a user-friendly format for an engaging web platform. For aim 2, we will enroll eligible participants recruited for the efficacy trial who could not enroll because of treatment barriers. Eligible participants will complete QoL, depression, anxiety, pain, treatment satisfaction, and program credibility measures at baseline and posttest. Inclusion criteria are identical to those for the efficacy trial, including stress and coping difficulties (self-report), no change in antidepressant medication in the past 3 months, no psychotherapy in the past 3 months, no major upcoming surgeries in the next 12 months, English speaking, ability to complete questionnaires on the web and participate in live video interventions, and consent before participation. The primary outcomes are feasibility, treatment satisfaction, and credibility. The secondary outcomes include physical, psychological, social, and environmental QoL; depression; anxiety; pain intensity; and pain interference. We will enroll at least two group cohorts and iteratively refine the program based on participant feedback after each cohort completes the open pilot trial. RESULTS: This trial is ongoing. We have completed the interviews (n=23) and analyzed the data to construct the website. Afterward, we will recruit our cohorts for the trial (approximately n=15/cohort; total=30). Recruitment will end by May 2021, with plans to analyze the data by October 2021. CONCLUSIONS: We will develop the first web platform for people with NF with difficulties managing stress and NF symptoms and report on feasibility and preliminary effects in improving QoL and psychosocial functioning. NF-Web has potential to extend the reach of our 3RP-NF intervention by removing barriers to care, including lack of trained providers, scheduling difficulties, and appearance concerns. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/27526.

A qualitative investigation of activity measurement and change following a mind-body activity program for chronic pain.

Increasing activity is important yet challenging among people with chronic pain. Objective assessment of activity using accelerometers (i.e., ActiGraph) has gained popularity, but reactivity to assessment and non-adherence to wearing the ActiGraph may bias data. We explored: 1) experiences of wearing the ActiGraph to identify ways to increase adherence and facilitate accurate assessment of activity; and 2) barriers and facilitators to increasing activity following two mind-body activity programs to optimize future interventions. We conducted semi-structured exit interviews with 13 participants with heterogenous chronic pain who completed a randomized controlled trial of two mind-body activity programs. We analyzed transcripts using a framework approach to generate themes. Participants indicated that receiving reminders increased ActiGraph wear adherence and reported that program skills such as gratitude, pacing, mindfulness, and deep breathing were facilitators to increasing activity, while medical problems were barriers. Interventions aiming to increase activity may benefit from emphasizing mind-body skills and sending ActiGraph wear reminders.

Thematic Analysis of Dyadic Coping in Couples With Young-Onset Dementia.

Importance: A diagnosis of young-onset dementia (YOD) is a life-altering event for both persons with dementia and their spousal caregivers. Dyadic coping (DC) theoretical models acknowledge that dyads cope with stressors as a unit, but these models have yet to be used in YOD. Objective: To explore the lived experiences of couples managing YOD using an integrated DC model. Design, Setting, and Participants: This qualitative study recruited couples from a single major medical setting and through social media. Eligibility criteria included cohabitation, 1 partner diagnosed with YOD and able to participate, and both partners willing to participate. Live online video interviews were conducted from March to June 2020. Exposures: One semistructured interview, which was recorded and subsequently transcribed. Recruitment was stopped once thematic saturation was reached. Main Outcomes and Measures: Five themes were deductively derived based on the integrated DC framework, including stress communication, positive individual DC, positive conjoint DC, negative individual DC, and negative conjoint DC. Within each theme, subthemes were inductively identified to further characterize couples' dyadic coping experiences with YOD. Results: A total of 23 couples were interviewed, comprising persons with dementia (11 women [48%]; mean [SD] age, 61.3 [4.65] years; mean [SD] time from diagnosis, 3.11 [3.85]) years; and spousal caregivers (13 women [57%]; mean [SD] age, 60.5 [5.40] years). Data supported the 5 a priori DC themes and novel subthemes describing couples' experiences with YOD. Specifically, couples enacted positive conjoint DC by approaching challenges using a teamwork approach to problem solving and relying on collaborative communication. In contrast, couples engaged in negative conjoint DC through mutual avoidance, leading to increased negative communication and conflict. Couples described initially engaging in avoidance and withdrawal to navigate YOD-related stressors. While these strategies provided short-term relief from challenging emotions, they prevented engagement in adaptive coping (eg, acceptance and collaborative problem-solving) to promote long-term adjustment. Conclusions and Relevance: This study used an evidence-based integrated DC approach to identify the positive and negative coping behaviors of couples managing YOD. To our knowledge, this is the first study to use a DC framework to guide qualitative analysis, and it provides valuable insights into DC strategies used by couples navigating YOD-related stressors. Findings can inform the development of dyadic psychosocial services for couples managing YOD and have implications for other progressive illnesses.

Can a Dyadic Resiliency Program Improve Quality of Life in Cognitively Intact Dyads of Neuro-ICU Survivors and Informal Caregivers? Results from a Pilot RCT.

BACKGROUND: Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL. METHODS: Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months' follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up. RESULTS: We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39-3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21-2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13-0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36-1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months' follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together). CONCLUSIONS: In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.