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.
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: 1) common psychosocial stressors experienced by both PWDs and CGs, 2) unique psychosocial stressors experienced by either PWDs or CGs, 3) common adaptive coping strategies employed by both PWDs and CGs, and 4) 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 Chronic pain is associated with poor physical and emotional functioning. Nonpharmacological interventions can help, but improvements are small and not sustained. Previous clinical trials do not follow recommendations to comprehensively target objectively measured and performance-based physical function in addition to self-reported physical function. Objective This study aimed to establish feasibility benchmarks and explore improvements in physical (self-reported, performance based, and objectively measured) and emotional function, pain outcomes, and coping through a pilot randomized controlled trial of a mind-body physical activity program (GetActive) with and without a digital monitoring device (GetActive-Fitbit), which were iteratively refined through mixed methods. Methods Patients with chronic pain were randomized to the GetActive (n=41) or GetActive-Fitbit (n=41) programs, which combine relaxation, cognitive behavioral, and physical restoration skills and were delivered in person. They completed in-person assessments before and after the intervention. Performance-based function was assessed with the 6-min walk test, and step count was measured with an ActiGraph. Results Feasibility benchmarks (eg, recruitment, acceptability, credibility, therapist adherence, adherence to practice at home, ActiGraph wear, and client satisfaction) were good to excellent and similar in both programs. Within each program, we observed improvement in the 6-min walk test (mean increase=+41 m, SD 41.15; P<.001; effect size of 0.99 SD units for the GetActive group and mean increase=+50 m, SD 58.63; P<.001; effect size of 0.85 SD units for the GetActive-Fitbit group) and self-reported physical function (P=.001; effect size of 0.62 SD units for the GetActive group and P=.02; effect size of 0.38 SD units for the GetActive-Fitbit group). The mean step count increased only among sedentary patients (mean increase=+874 steps for the GetActive group and +867 steps for the GetActive-Fitbit group). Emotional function, pain intensity, pain coping, and mindfulness also improved in both groups. Participants rated themselves as much improved at the end of the program, and those in the GetActive-Fitbit group noted that Fitbit greatly helped with increasing their activity. Conclusions These preliminary findings support a fully powered efficacy trial of the two programs against an education control group. We present a model for successfully using the Initiative on the Methods, Measurement, and Pain Assessment in Clinical Trials criteria for a comprehensive assessment of physical function and following evidence-based models to maximize feasibility before formal efficacy testing. Trial Registration ClinicalTrial.gov NCT03412916; https://clinicaltrials.gov/ct2/show/NCT03412916
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 two 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 non-randomized 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.
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 PARTICIPANTSThis 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 MEASURESFive 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 apriori 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 RELEVANCEThis 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.
Background: Improving all aspects of physical function is an important goal of chronic pain management. Few studies follow recent guidelines to comprehensively assess physical function via patient-reported, performance-based, and objective/ambulatory measures. Purpose: To test 1) the interrelation between the 3 types of physical function measurement and 2) the association between psychosocial factors and each type of physical function measurement. Methods: Patients with chronic pain (N=79) completed measures of: 1) physical function (patient-reported disability; performancebased 6-minute walk-test; objective accelerometer step count); 2) pain and non-adaptive coping (pain during rest and activity, pain-catastrophizing, kinesiophobia); 3) adaptive coping (mindfulness, general coping, pain-resilience); and 4) social-emotional dysfunction (anxiety, depression, social isolation and emotional support). First, we tested the interrelation among the 3 aspects of physical function. Second, we used structural equation modeling to test associations between psychosocial factors (pain and non-adaptive coping, adaptive coping, and social-emotional dysfunction) and each measurement of physical function. Results: Performance-based and objective physical function were significantly interrelated (r=0.48, p<0.001) but did not correlate with patient-reported disability. Pain and nonadaptive coping (β=0.68, p<0.001), adaptive coping (β=−0.65, p<0.001) and socialemotional dysfunction (β=0.65, p<0.001) were associated with patient-reported disability but not to performance-based or objective physical function (ps>0.1). Conclusion: Results suggest that patient-reported physical function may provide limited information about patients' physical capacity or ambulatory activity. While pain and nonadaptive reactions to it, adaptive coping, and social-emotional dysfunction may potentially improve patient-reported physical function, additional targets may be needed to improve functional capacity and ambulatory activity. Trial Registration: ClinicalTrials.gov NCT03412916.
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.
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