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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) 2021 APA, all rights reserved).

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.

BACKGROUND: Admission to a Neuroscience Intensive Care Unit (Neuro-ICU) is sudden and often traumatic for both patients and their informal caregivers. No prior studies have assessed prospectively risk and resiliency factors for chronic posttraumatic symptoms, as well as the potential interdependence between patients and caregivers symptoms over time. PURPOSE: To analyze the impact of baseline resiliency factors on symptoms of posttraumatic stress (PTS) longitudinally in dyads of patients admitted to the Neuroscience Intensive Care Unit (Neuro-ICU) and their primary family caregivers. METHOD: We recruited dyads (M=108) of patients admitted to the Neuro-ICU (total N = 102) and their family caregivers (total N = 103). Dyads completed self-report assessments of PTS, and resiliency factors (mindfulness and coping) at baseline in the Neuro-ICU. PTS was measured again at 3- and 6-month follow-up. RESULTS: Clinically significant PTS symptoms were high at baseline in both patients (20%) and caregivers (16%), and remained high through 6 months (25% in patients;14% in caregivers). Actor-partner interdependence modeling demonstrated that severity of PTS symptoms was predictive of PTS symptoms at subsequent time points (ps

Anxiety is common in patients experiencing neurocritical illness and their family caregivers. Resilience factors like mindfulness and coping skills may be protective against symptoms of emotional distress, including anxiety. Less is known about the interplay of anxiety symptoms and resilience factors between patients and caregivers. The purpose of this study is to examine the trajectory of anxiety symptoms among dyads of neurocritical care patients without major cognitive impairment and their family caregivers and to elucidate the relationship between resiliency (e.g., mindfulness and coping) and anxiety in these dyads. Prospective, longitudinal study of adults admitted to the neurological intensive care unit (Neuro-ICU) and their caregivers. Dyads of patients (N = 102) and family caregivers (N = 103) completed self-report measures of mindfulness (Cognitive Affective Mindfulness Scale-Revised) and coping (Measure of Current Status-Part A) during Neuro-ICU hospitalization and anxiety symptoms (anxiety subscale of the Hospital Anxiety and Depression Scale) during hospitalization and at 3- and 6-month follow-up. We used actor–partner interdependence modeling to predict the effect of one’s own baseline characteristics on one’s own and one’s partner’s future anxiety symptoms. Rates of clinically significant anxiety symptoms were 40% for patients and 42% for caregivers at baseline. Of these, 20% of patients and 23% of caregivers showed moderate and severe symptoms. Approximately, one-third of patients and caregivers reported clinically significant anxiety symptoms at 3- and 6-month follow-ups, with more than 20% endorsing moderate or severe symptoms. Patients’ own baseline mindfulness, coping, and anxiety symptoms were associated with lower anxiety symptoms at all time points (ps

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.

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. 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. 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). 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.

Key Points Question Is participation in a dyadic resiliency intervention associated with a measurable reduction in symptoms of depression, anxiety, and posttraumatic stress (PTS) compared with participation in an educational control? Findings In this pilot, single-blind, randomized clinical trial of 58 dyads of survivors of the neuroscience intensive care unit and their informal caregivers, survivors and caregivers who received the active intervention experienced a significant reduction in symptoms of depression, anxiety, and PTS. Meaning In this pilot randomized clinical trial, the dyadic resiliency intervention was feasible, and the findings suggest that it may prevent chronic emotional distress in survivors of acute brain injury and their caregivers., This pilot randomized clinical trial evaluates the feasibility and preliminary effect of the novel dyadic resiliency intervention Recovering Together in reducing symptoms of depression, anxiety, and posttraumatic stress among patients hospitalized in the neuroscience intensive care unit and their informal caregivers., Importance To our knowledge, there are no evidence-based interventions to prevent chronic emotional distress (ie, depression, anxiety, and posttraumatic stress [PTS]) in critical care survivors and their informal caregivers. Objective To determine the feasibility and preliminary effect of the novel dyadic resiliency intervention Recovering Together (RT) on reducing symptoms of depression, anxiety, and PTS among hospitalized patients and their informal caregivers. Design, Setting, and Participants This single-blind, pilot randomized clinical trial of RT vs an educational control was conducted among 58 dyads in which either the survivor or caregiver endorsed clinically significant symptoms of depression, anxiety, or PTS. The study was conducted in the neuroscience intensive care unit at Massachusetts General Hospital. Data were collected from September 2019 to March 2020. Interventions Both RT and control programs had 6 sessions (2 at bedside and 4 via live video after discharge), and both survivor and caregiver participated together. Main Outcomes and Measures The primary outcomes were feasibility of recruitment and intervention delivery, credibility, and satisfaction. The secondary outcomes included depression and anxiety (measured by the Hospital Depression and Anxiety Scale), PTS (measured by the PTSD Checklist–Civilian Version), and intervention targets (ie, mindfulness, measured by the Cognitive and Affective Mindfulness Scale–Revised; coping, measured by the Measure of Current Status–Part A; and dyadic interpersonal interactions, measured by the Dyadic Relationship Scale). Main outcomes and targets were assessed at baseline, 6 weeks, and 12 weeks. Results The 58 dyads were randomized to RT (29 dyads [50.0%]; survivors: mean [SD] age, 49.3 [16.7] years; 9 [31.0%] women; caregivers: mean [SD] age, 52.4 [14.3] years; 22 [75.9%] women) or control (29 dyads [50.0%]; survivors: mean [SD] age, 50.3 [16.4] years; 12 [41.3%] women; caregivers, mean [SD] age, 52.1 [14.9], 17 [58.6%] women). Feasibility (recruitment [76%], randomization [100%], and data collection [83%-100%]), adherence (86%), fidelity (100%; κ = 0.98), satisfaction (RT: 57 of 58 [98%] with scores >6; control: 58 of 58 [100%] with scores >6), credibility (RT: 47 of 58 [81%] with scores >6; control: 46 of 58 [80%] with scores >6), and expectancy (RT: 49 of 58 [85%] with scores >13.5; 51 of 58 [87%] with scores >13.5) exceeded benchmarks set a priori. Participation in RT was associated with statistically and clinically significant improvement between baseline and postintervention in symptoms of depression (among survivors: −4.0 vs −0.6; difference, −3.4; 95% CI, −5.6 to −1.3; P = .002; among caregivers: −3.8 vs 0.6; difference, −4.5; 95% CI, −6.7 to −2.3; P

Background and Objectives The relationship between chronic pain (CP) and cognitive decline (CD) is bidirectional among older adults. The CP–CD comorbidity can progressively worsen cognitive, physical, emotional, and social functioning with aging. We explored the feasibility and outcomes associated with 2 mind–body activity programs for CP and CD that focus on increasing walking using time goals (Active Brains) or step-count reinforced via Fitbit (Active Brains–Fitbit). Research Design and Methods Older adults with CP and CD participated in a nonrandomized open pilot of Active Brains (n = 6) and Active Brains–Fitbit (n = 6) followed by exit interviews. Quantitative analysis explored feasibility markers and signals of improvement on physical, cognitive, and emotional function, as well as additional program targets. Qualitative analyses were predominantly deductive and applied the Framework Method to enhance the programs and methodology. Results Both programs met a priori feasibility benchmarks. We found within-group improvements for pain intensity, pain-specific coping, physical function, and cognitive function in both programs. Exit interviews confirmed high satisfaction with both programs. Discussion and Implications Our mixed-methods data provide preliminary evidence of feasibility, showed promise for improving outcomes, and yielded critical information to further enhance the programs. We discuss “lessons learned” and future directions.

Informal caregivers of patients admitted to the neuroscience intensive care unit (Neuro-ICU) are at risk for developing chronic anxiety. Resiliency factors may reduce risk, yet their differential effects for female and male caregivers have not been studied in this population. We aim to examine interactions between gender and baseline resiliency factors and anxiety at baseline, 3 months, and 6 months. Prospectively studied caregivers (N = 96) of patients admitted to the Neuro-ICU completed baseline sociodemographics and resiliency measures (coping, mindfulness, self-efficacy, intimate care, and caregiver preparedness), and anxiety severity at baseline (hospitalization), 3 months, and 6 months. Baseline anxiety predicted future anxiety (3 and 6 months). Caregivers who reported high (versus low) baseline coping, mindfulness, self-efficacy, and preparedness for caregiving reported lower baseline anxiety (ps ≤ 0.012). An interaction between caregiver gender and baseline mindfulness was seen at 3 months (p = 0.021), with high mindfulness males reporting lower anxiety than high mindfulness females, and low mindfulness males reporting higher anxiety than low mindfulness females. Results emphasize the protective role of resilience in the trajectory of anxiety among informal caregivers. Findings emphasize the need to rapidly deploy skills-based treatment to Neuro-ICU caregivers to prevent future development and maintenance of anxiety, specifically emphasizing mindfulness in male caregivers.

Background and ObjectivesChronic pain (CP) and cognitive decline (CD) often co-occur in older adults, which can reinforce a “disability spiral.” Early interventions teaching pain coping skills and gradual increases in activity (walking) are needed to promote overall well-being and potentially delay further decline of cognition and daily functioning. The goal of this mixed-methods study was to guide the development of two mind–body activity programs for CP and CD which focus on increasing walking using time goals (Active Brains) or step count reinforced by a Fitbit (Active Brains–Fitbit).Research Design and MethodsOlder adults with CP and CD (N = 23) participated in a one-time focus group (four total) and completed measures of physical, emotional, and cognitive functioning. Qualitative analyses identified population-specific needs, preferences, and perceptions of proposed program skills. Quantitative analysis compared clinical characteristics to population norms and explored intercorrelations among treatment targets.ResultsThematic analyses revealed six main themes: (1) challenges living with CP and (2) CD, (3) current walking, (4) technology (Fitbit) to increase walking, (5) perceptions of proposed program skills (e.g., mind–body, pain, and increased walking), and (6) program barriers and facilitators. Quantitative analyses showed that (a) participants had physical function below reference values and (b) higher self-efficacy correlated with higher cognitive, emotional, and physical functioning.Discussion and ImplicationsFocus group participants were enthusiastic about the proposed program skills. Current work includes open pilot testing, qualitative interviews, and a small randomized controlled trial to optimize the programs and methodology in preparation for efficacy testing against an educational control.

Background Neurofibromatosis (NF) is a rare genetic disorder associated with substantial deficits in quality of life (QoL). We have previously shown that in this population the Relaxation Response Resiliency Program for NF (3RP-NF) delivered via live videoconferencing is associated with sustained improvement in QoL from baseline through 6-month follow-up over and above an attention placebo control.. Purpose To examine between- and within-group changes in QoL domains from baseline to 1-year follow-up and 6-month to 1-year follow-up. Methods We enrolled and randomized 63 adults with NF. Of these, 52 completed the 6-month follow-up and 53 completed 1-year follow-up. We assessed QoL with the World Health Organization Quality of Life—Brief. Results Participation in the 3RP-NF was associated with sustained improvement from baseline to 1 year in physical health QoL (12.68; 95% confidence interval [CI]: 1.76 to 23.59; p =.024) and social relations QoL (16.81; 95% CI: 3.03 to 30.59; p =.018) but not psychological and environmental QoL, over and above the control (between group changes). Participants in the 3RP-NF improved from baseline to 1 year in psychological (8.16; 95% CI: 1.17 to 15.14; p =.023) and social relations QoL (9.93; 95% CI: 1.10 to 18.77; p = .028; within-group changes). There were no other significant differences between or within groups from baseline/6 months to 1 year. Conclusions The live video 3RP-NF shows promise in improving QoL dimensions over the course of 1 year. Results should be replicated in a fully powered randomized controlled trial. Clinical Trial information ClinicalTrials.gov NCT03406208.

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.