ABSTRACT
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.
Subject(s)
Problem Behavior , Resilience, Psychological , Stress Disorders, Post-Traumatic , Male , Female , Humans , Caregivers , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/diagnosis , Intensive Care UnitsABSTRACT
Patients with amyotrophic lateral sclerosis (ALS) are impacted both physically and psychiatrically during their illness. Emotional distress (ie, anxiety, depression, stress) is common in patients diagnosed with ALS, as prognosis is poor and there are very few effective treatments. The progression of symptoms is unpredictable, and all cases are terminal. Neuropsychiatric symptoms are also increasingly recognized as part of ALS symptomatology. There are currently no empirically supported interventions or best practices for adjustment to ALS. This case presents both the psychological and pharmacologic aspects of caring for a patient with ALS. Psychotherapy utilized a cognitive behavioral therapy-informed approach, and pharmacotherapy was tailored to the specific needs of the patient. We explore how these approaches impacted our patient, as well as how ALS-specific challenges presented throughout the course of treatment.
Subject(s)
Amyotrophic Lateral Sclerosis , Cognitive Behavioral Therapy , Psychological Distress , Aged , Humans , Male , Amyotrophic Lateral Sclerosis/complications , Amyotrophic Lateral Sclerosis/diagnosis , Amyotrophic Lateral Sclerosis/therapy , PsychotherapyABSTRACT
The purpose of this study was to analyze secondary resiliency and user experience outcomes from a novel, 8-week website-based mind-body intervention (NF-Web) for adults (18+) with neurofibromatosis (NF1, NF2, and schwannomatosis), a genetic, neurocutaneous disorder characterized by nerve sheath tumors of the central and peripheral nervous system. The study design was a secondary data analysis of a single-arm, early feasibility pilot study (September 2020-May 2021) for adults with NF (N = 28). Across participants, the mean age was 46 (SD = 13.67) and included 22 females and 6 males. Participants completed baseline and posttest assessments (t-tests), as well as exit interviews (exploratory rapid data analysis). Results demonstrated that participation was associated with pre-to-post improvements in gratitude, coping, and mindfulness (p < .05). Exit interviews indicated participant enjoyment and that many would recommend NF-Web to a friend. Participants found the website easy to navigate and enjoyed NF-Web's video format. Many found transcripts useful if they had hearing differences or if English was their second language. NF-Web demonstrated initial signals of improvement in resiliency outcomes and positive user experience. Future pilot RCTs will explore these changes by NF type.
Subject(s)
Neurilemmoma , Neurofibromatoses , Neurofibromatosis 1 , Neurofibromatosis 2 , Resilience, Psychological , Male , Adult , Female , Humans , Middle Aged , Pilot Projects , Neurofibromatoses/therapy , InternetABSTRACT
PURPOSE: To test the effects of the Relaxation Response Resiliency Program - Neurofibromatosis (3RP-NF), a mind-body resilience program for people with NF, on resilience factors from baseline to post-treatment and 6- and 12-month follow-up. METHODS: This is a secondary analysis of a fully powered randomized clinical trial (RCT) of 3RP-NF and health education control (HEP-NF). We recruited adults with NF1, NF2, or schwannomatosis who reported stress or difficulty coping with NF symptoms. Both conditions received 8 weekly 90-minute group sessions; 3RP-NF focused on building resilience skills. We measured resilience factors via the Measure of Current Status-A (adaptive coping), Cognitive and Affective Mindfulness Scale-Revised (mindfulness), Gratitude Questionnaire-6 (gratitude), Life Orientation Test Optimism Scale (optimism), and Medical Outcomes Study Social Support Survey (perceived social support) at baseline, post-intervention, and 6- and 12-month follow-up. We used linear mixed models with completely unstructured covariance across up to four repeated measurements (baseline, post-treatment, and 6- and 12-month follow-up) to investigate treatment effects on resilience factors. RESULTS: We enrolled 228 individuals (Mage=42.7, SD = 14.6; 74.5% female; 87.7% White; 72.8% NF1, 14.0% NF2, 13.2% schwannomatosis). Within groups, both 3RP-NF and HEP-NF showed statistically significant improvements in all outcomes across timepoints. 3RP-NF showed significantly greater improvement in adaptive coping compared to HEP-NF from baseline to post-intervention and baseline to 6 months (Mdifference= 0.29; 95% CI 0.13-0.46; p < 0.001; Mdifference= 0.25; 95% CI 0.07-0.33; p = 0.005); there were no other between-group differences amongst the remaining resilience factors. CONCLUSION: 3RP-NF showed promise in sustainably improving coping abilities amongst people with NF. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov Identifier: NCT03406208. Registration submitted December 6, 2017, first patient enrolled October 2017.
Subject(s)
Neurilemmoma , Neurofibromatoses , Skin Neoplasms , Female , Humans , Adult , Male , Neurofibromatoses/therapy , Neurofibromatoses/psychology , Adaptation, PsychologicalABSTRACT
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive weakness and eventual death, usually within 3-5 years. An ALS diagnosis is associated with substantial emotional distress for both the affected person and their family care-partners which impairs the ability to engage in important conversations about long term care planning, negatively impacts ALS symptoms for the patient, and quality of life for both patient and care-partner. Here we 1) discuss published works identified by the authors about psychosocial interventions for the ALS population, 2) identify a lack of early, dyadic interventions to support psychosocial needs of people with ALS and care-partners; 3) describe the Neurodegenerative Diseases (NDD) framework for early dyadic intervention development and 4) propose an adaptation of an evidence-based early dyadic psychosocial intervention, Recovering Together, for the unique needs of people with ALS and their care-partners (Resilient Together-ALS; RT-ALS) using the NDD framework. Future work will use stakeholder feedback to optimize the intervention for subsequent efficacy testing.
ABSTRACT
This commentary describes the current state of psychosocial care for people with amyotrophic lateral sclerosis and their caregivers. We provide recommendations for developing a roadmap for future research based on existing literature and our group's clinical and research experience to inform next steps to expand evidence-based psychosocial care for people with amyotrophic lateral sclerosis and their caregivers, with potential implications for a range of advanced illnesses.
This article talks about psychosocial care for people with amyotrophic lateral sclerosis and the loved ones who take care of them (caregivers). We talk about gaps in current psychosocial care and offer ideas about research to help develop care options for people with amyotrophic lateral sclerosis and their caregivers. It is possible that this work could also guide the development of psychosocial care for people with other advanced illnesses and their caregivers.
Subject(s)
Amyotrophic Lateral Sclerosis , Psychiatric Rehabilitation , Humans , Amyotrophic Lateral Sclerosis/therapy , Amyotrophic Lateral Sclerosis/psychology , Palliative Care , Psychosocial Support Systems , Adaptation, PsychologicalABSTRACT
BACKGROUND: Emotional distress can lead to suicidal ideation and potentially suicide completion, yet there is very little literature on suicidal ideation in individuals with a diagnosis of neurofibromatosis (NF; NF1, NF2, and schwannomatosis). OBJECTIVE: To examine the baseline occurrence, severity, and clinical correlates of suicidal ideation in adults with NF. METHOD: Individuals with NF (N = 220) completed assessments measuring depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), perceived stress (Perceived Stress Scale-10), pain (Graded Chronic Pain Scale and PROMIS Pain Interference Short Form 8a), and general quality of life (World Health Organization Quality of Life-Brief version) before beginning a two-arm, single-blind randomized control trial of a live-video mind-body program for stress management and resiliency. RESULTS: Nineteen percent (n = 42) of the individuals experienced suicidal ideation (ie, >0; ideation present several days or greater). More individuals with NF2 experienced suicidal ideation compared with those with NF1 or schwannomatosis. All of the clinical variables except pain intensity were significantly correlated ( P < 0.01) with greater suicidal ideation. Suicidal ideation in individuals with NF was comparable to or higher than that in other medical populations (eg, cancer, dermatological, neurologic). Depression and poor psychological quality of life significantly increased the risk for suicidal ideation. CONCLUSION: Suicidal ideation was relatively prevalent in individuals with NF seeking participation in a mind-body randomized controlled trial. NF clinicians should be prepared to discuss these concerns and provide resources when suicidal ideation is present. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov (Identifier NCT03406208).
Subject(s)
Neurofibromatoses , Suicidal Ideation , Humans , Adult , Quality of Life , Single-Blind Method , Pain , Depression/psychologyABSTRACT
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.
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BACKGROUND: Neurodegenerative diseases (NDDs) are increasingly prevalent and radically alter the lives of individuals and their informal care partners (together called a dyad). As symptoms progress, dyads are at risk for elevated emotional distress and declines in relationship functioning and quality of life. Psychosocial interventions delivered to dyads early after diagnosis have successfully prevented chronic emotional distress across several chronic illnesses including cancer and acute brain injury. Dyads with NDD could benefit from such interventions, however, they are limited. Because NDDs have symptom profiles that are distinct from other chronic illnesses, they require a unique framework and interventions. Given the limited dyadic interventions and unified symptoms across NDDs, a transdiagnostic framework may help to enhance scalability and efficiency. To address this problem, we developed a transdiagnostic framework that cuts across NDD physical and emotional diagnoses to inform cost-effective and sustainable NDD dyadic interventions. METHODS: To develop this framework, we conducted: (1) a narrative review on dyadic adjustment and existent dyadic interventions for those with NDDs, and (2) integrated findings to develop our NDD transdiagnostic framework for dyadic interventions early after diagnosis. RESULTS: Findings revealed no existent dyadic interventions for NDDs delivered shortly after diagnosis. Among available interventions, all were delivered later in disease progression, thereby focusing on dyadic challenges at more advanced stages. In addition, although research emphasized the influence of individual, dyadic, and contextual factors on dyads' early adjustment to NDDs, no conceptual model has been developed. Informed by theory and current research, we introduce an NDD transdiagnostic framework for couples' early biopsychosocial adjustment. This framework includes NDD specific: contextual factors, illness-related factors, individual and dyadic stressors, adaptive coping strategies, and dyads' resources. CONCLUSIONS: Our NDD transdiagnostic framework can be used to inform early dyadic psychosocial interventions that cut across all NDDs. This approach has important implications for implementation and scalability.
Subject(s)
Neoplasms , Neurodegenerative Diseases , Adaptation, Psychological , Humans , Neoplasms/psychology , Neurodegenerative Diseases/therapy , Quality of LifeABSTRACT
Emotional distress (depression, anxiety, and PTS) and unhealthy lifestyle factors (e.g., smoking, alcohol consumption, poor diet, limited physical activity, medication adherence) are common in hemorrhagic stroke (HS) survivors and may increase risk for recurrence, morbidity, and mortality. Emotional distress and unhealthy lifestyle factors tend to be interdependent between survivors and their informal caregivers (e.g., family and friends who provide unpaid care; together called dyads), such that one partner's lifestyle and coping behaviors influence the other's behaviors, yet no research has closely examined this relationship in HS dyads over time. We will conduct a mixed methods study to quantitatively and qualitatively understand the longitudinal relationship between emotional distress and lifestyle factors across time in this population (HS dyads) to identify treatment targets to prevent emotional distress chronicity and stroke recurrence. In aim 1, we will assess emotional distress (i.e., depression, anxiety, and PTS) and lifestyle factors (smoking, alcohol consumption, poor diet, limited physical activity medication adherence/blood pressure control) in dyads of survivors of HS and their caregivers (N = 80), at three separate time points (hospitalization in the Neuro-ICU, 1, and 3 months later). We hypothesize that 1) lifestyle factors and emotional distress will be interrelated within and across time for both survivors and caregivers, and 2) lifestyle factors and emotional distress will be interdependent between survivors and caregivers. We also aim to explore the nuanced interplay between lifestyle factors and emotional distress and gain in depth information on barriers and facilitators for a dyadic intervention to optimize lifestyle behaviors and emotional functioning in HS dyads. Eligible patients will be adults who have a caregiver also willing to participate. Patients will be referred for study participation by the nursing team who will ensure that they are cognitively able to meaningfully participate. Multilevel dyadic modeling (i.e., actor-partner interdependence model; APIM) with distinguishable dyads will be used to determine influences of these factors onto each other over time. In Aim 2, we will conduct live video qualitative dyadic interviews (N = 20 or until theme saturation) at all time points from the same participants with and without emotional distress and at least one lifestyle risk factor, to understand the nuanced relationships between emotional distress and lifestyle behaviors, and barriers and facilitators to engagement in a skills-based psychosocial intervention. Interviews will be analyzed using inductive and deductive approaches. The present study is currently ongoing. So far, we enrolled 2 participants. Recruitment will end October 2022 with plans to analyze data by December 2022. The findings from this study will be used to further develop psychosocial interventions and inform novel treatments for survivors of HS and their informal caregivers.
Subject(s)
Hemorrhagic StrokeABSTRACT
Objectives: We aimed to test early feasibility, acceptability, and signals of improvement after the 8-week individually delivered asynchronous, web-based mind-body program (NF-Web) modeled after the synchronous group-based live video program (Relaxation Response Resiliency Program for NF; 3RP-NF). Methods: Two cohorts (cohort 1 n = 14, cohort 2 n = 14) completed baseline and posttest (feasibility markers, t-tests). Results: Enrolled participants (N = 28; 80% of those eligible) completed baseline (N = 28; 100% of sample) and posttests (N = 25; 89.3%). Video lesson (58.0%) and homework (70.9%) completion were fair to good. Satisfaction (M = 8.85/10; SD = 2.35), credibility (M = 7.07/10; SD = 1.44), and expectancy (M = 6.68/10; SD = 2.10) were good to excellent. Participation was associated with statistically significant pre-to-post positive changes in quality of life (QoL; Physical, Psychological, Social, and Environmental,; p < 0.05) and emotional distress (depression, anxiety, and stress; p < 0.05). Pain intensity and interference did not improve significantly (p > 0.05) after participation. Conclusions: NF-Web demonstrates initial feasibility, acceptability, and signals of improvement. Results support future trials to ascertain efficacy. Innovation: Web-based programs may be valuable for individuals with rare illness who prefer to learn skills on their own timeline, have barriers to live video participation, and who also have apprehensions about interacting with others during treatment.
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OBJECTIVES: Older adults (OA; 65+) can become cognitively fused with negative attitudes and stereotypes. Given the verbal nature of ageist stereotypes, mindfulness and acceptance-based practices (MABPs) may help the impact of negative aging attitudes by increasing non-judgmental awareness, cognitive defusion, and acceptance. As part of a larger study, this project examined whether an Acceptance and Commitment Therapy (ACT) consistent MABP would reduce negative aging attitudes using an experimental design. We hypothesized that assignment to the MABP condition would be associated with lower negative aging attitudes for both OAs and university undergraduates (18-25). METHOD: Both OAs (N = 60) and undergraduate student (N = 60) participants were assigned to the experimental or comparison condition (MABP vs. sit-and-think task) and were then presented negative ageist stereotypes assessed with two ageism measures. RESULTS: Following the MABP, undergraduates who received a MABP had significantly lower ageism scores than did undergraduates who did not, while OAs endorsed higher scores on ageism after receiving the MABP (vs comparison group; ps < .05). There was no significant condition by age sample interaction effect. CONCLUSION: Results suggest that undergraduates and OAs may have different strategies for recontextualizing ageist attitudes, with OAs possibly employing different strategies when confronted with ageism in an experimental context. Overall, aging education, OA experimental research, and evidence-based interventions for negative beliefs about aging are needed. Limitations and future directions are discussed.
Subject(s)
Acceptance and Commitment Therapy , Ageism , Mindfulness , Aged , Ageism/psychology , Aging/psychology , Attitude , Humans , Stereotyping , Students/psychologyABSTRACT
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.
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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.
Subject(s)
Caregivers , Quality of Life , Adaptation, Psychological , Aftercare , Caregivers/psychology , Humans , Intensive Care Units , Patient Discharge , Pilot Projects , Quality of Life/psychology , SurvivorsABSTRACT
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.
Subject(s)
Mind-Body Therapies/methods , Neurofibromatoses/psychology , Neurofibromatoses/therapy , Quality of Life/psychology , Relaxation Therapy/methods , Adult , Female , Follow-Up Studies , Humans , Male , Middle Aged , Pilot Projects , Resilience, Psychological , Single-Blind Method , Telemedicine , United States/epidemiology , VideoconferencingABSTRACT
BACKGROUND AND OBJECTIVES: Chronic 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 METHODS: Older 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. RESULTS: Thematic 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 IMPLICATIONS: Focus 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.
Subject(s)
Cognitive Dysfunction , Pain Management , Aged , Cognition , Humans , Self Efficacy , WalkingABSTRACT
BACKGROUND: A stroke is a sudden, life-altering event with potentially devastating consequences for survivors and their loved ones. Despite advances in endovascular and neurocritical care approaches to stroke treatment and recovery, there remains a considerable unmet need for interventions targeting the emotional impact of stroke for both patients and their informal caregivers. This is important because untreated emotional distress becomes chronic and negatively impacts quality of life in both patients and caregivers. Our team previously used mixed methods to iteratively develop a six-session modular dyadic intervention to prevent chronic emotional distress in patients with stroke and their informal caregivers called "Recovering Together" (RT) using feedback from dyads and the medical team. The aim of the current study is to test the feasibility of recruitment, acceptability of screening and randomization methods, acceptability of RT, satisfaction with RT, feasibility of the assessment process at all time points, and acceptability of outcome measures. Secondarily, we aimed to explore within-treatment effect sizes and change in clinically significant symptoms of depression, anxiety, and post-traumatic stress (PTS). The larger goal was to strengthen methodological rigor before a subsequent efficacy trial. METHODS: We conducted a feasibility randomized controlled trial to evaluate the RT intervention relative to minimally enhanced usual care (MEUC) in stroke patients admitted to a Neurosciences Intensive Care Unit (Neuro-ICU). Dyads were enrolled within 1 week of hospitalization if they met specific eligibility criteria. Assessments were done via paper and pencil at baseline, and electronically via REDCap or over the phone at post-intervention (approximately 6 weeks after baseline), and 3 months later. Assessments included demographics, resiliency intervention targets (mindfulness, coping, self-efficacy, and interpersonal bond), and emotional distress (depression, anxiety, and PTS). Primary outcomes were feasibility and acceptability markers. Secondary outcomes were depression, anxiety, PTS, mindfulness, coping, self-efficacy, and interpersonal bond. RESULTS: We consented 20 dyads, enrolled 17, and retained 16. Although many patients were missed before we could approach them, very few declined to participate or dropped out once study staff made initial contact. Feasibility of enrollment (87% of eligible dyads enrolled), acceptability of screening, and randomization (all RT dyads retained after randomization) were excellent. Program satisfaction (RT post-test M = 11.33/12 for patients M = 12/12 for caregivers), and adherence to treatment sessions (six of seven RT dyads attending 4/6 sessions) were high. There were no technical difficulties that affected the delivery of the intervention. There was minimal missing data. For both patients and caregivers, participation in RT was generally associated with clinically significant improvement in emotional distress symptoms from baseline to post-test. Participation in MEUC was associated with clinically significant worsening in emotional distress. Although some of the improvement in emotional distress symptoms decreased in the RT group between post-test to 3 months, these changes were not clinically significant. RT was also associated with substantial decrease in frequency of individuals who met criteria for clinically significant symptoms, while the opposite was true for MEUC. There were many lessons that informed current and future research. CONCLUSIONS: This study provided evidence of feasibility and signal of improvement in RT, as well as necessary methodological changes to increase recruitment efficiency before the future hybrid efficacy-effectiveness trial. TRIAL REGISTRATION: NCT02797509.
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BACKGROUND: 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. METHOD: 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. RESULTS: 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. CONCLUSION: 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.