Parental Self-Efficacy and Personal Time Help Explain Impact of Parent-Staff Interactions on Parental Distress and Bonding in the NICU.

OBJECTIVES: To identify factors that help explain associations between parent-staff interactions and: (1) parental depression, anxiety, and posttraumatic stress; and (2) parent-child bonding in the neonatal intensive care unit (NICU). STUDY DESIGN: Our cross-sectional mixed methods survey investigated the ways in which parental-staff interactions relate to parental distress and parent-child bonding. Parents with babies in the NICU (N = 165) completed validated measures and open-ended questions about their experiences with staff. Using a sequential explanatory approach, we examined: (1) whether and how parental self-efficacy and personal time mediated parent-staff interactions on distress and bonding; and (2) parental written accounts of experiences with staff. RESULTS: Multiple mediation analyses revealed that parent-staff interactions exhibited an: (1) indirect effect on parental depression (b = -.05, SE = .02, CI [-.10, -.01]), anxiety (b = -.08, SE = .04, CI [-.16, -.02]), and parent-child bonding (b = -.26, SE = .08, CI [-.43, -.11]) through parental self-efficacy; and (2) indirect effect on parental posttraumatic stress (b = -.08, SE = .04, CI [-.17, -.00], CSIE= -.06) through parental personal time. Thematic analyses revealed that emotional and instructional support from staff helped build parental self-efficacy. Trust with staff helped parents feel comfortable leaving the bedside and engage in basic needs (eg, eat, sleep). CONCLUSIONS: Family-staff dynamics are the foundation for high quality family-centered care. Staff who empower parents to participate in care, engage in parenting tasks, and take care of themselves may reduce their distress and improve relationships among staff, parents, and babies.

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

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

Associations Between Attachment and Depressive Symptoms Among Older Adults Living With Early-Stage Cognitive Impairment and Their Adult Children.

OBJECTIVES: This study examined the extent to which multiple relationship-specific attachment schemas (general, parent-child, and romantic) are interrelated and relate to depressive symptoms among older adults living with early-stage dementia and their adult children, a context likely to activate the attachment system. METHODS: The study consisted of 150 early-stage cognitively impaired parents and one child. Both self-reported general, parent-child, and romantic attachment anxiety as well as avoidance and depressive symptoms. Parents' cognitive and functional impairment were assessed. RESULTS: Most attachment variables were interrelated for individuals, except that the child's parent-child-specific avoidance was not associated with their general or romantic avoidance. The parent's worse functional, but not cognitive, impairment was associated with the child's greater parent-child-specific attachment anxiety. Using Actor Partner Interdependence Models, general attachment anxiety was associated with greater depressive symptoms (actor effects). When both dyad members were high in general avoidance, depressive symptoms were greatest (actor × partner effect). A parent had the greatest depressive symptoms when they were avoidantly attached to their child (role × actor effect) and their child was high in anxiety and low in avoidance toward them (role × partner effects). A child had the greatest depressive symptoms when they were low in avoidance toward the parent (role × actor effect) and the parent was low in anxiety and high in avoidance toward the child (role × partner effects). Romantic anxiety was associated with greater depressive symptoms (actor effects). DISCUSSION: Psychosocial interventions that incorporate attachment theory as a framework may benefit parent-child dyads coping with dementia.

"They really trust us!": Medical Interpreter's Roles and Experiences in an Integrated Primary Care Clinic.

This study describes medical interpreters' experiences with behavioral health (BH) services in a primary care clinic. Focus group data with medical interpreters representing multiple languages was analyzed using hybrid inductive-deductive thematic analysis. Themes related to interpreter roles were: (1) case management, (2) patient-interpreter relationship, and (3) patient-provider liaison. Themes related to barriers and facilitators to interpreter-mediated BH care were: (1) cultural factors, (2) patient-provider interactions, (3) BH-specific considerations, and (4) clinic factors. Results illustrate ways that interpreters directly (e.g., interpreter-mediated services) and indirectly (e.g., relationship building) support care. The interpreter-patient relationship reportedly helped improve patient attitudes and buy-in for BH.

PTSD symptoms, pain catastrophizing, and pain outcomes after acute orthopedic injury.

BACKGROUND: PTSD is associated with greater incidence of chronic pain. Pain catastrophizing often accounts for this association. Less is known about these relationships during the acute phase (1-2 months) following orthopedic traumatic injuries. We sought to understand which orthopedic traumatic injury-related PTSD symptoms were associated with acute pain and physical dysfunction and whether pain catastrophizing accounted for these associations. METHODS: This secondary analysis uses baseline data from a multisite randomized controlled trial of an intervention for individuals with heightened pain catastrophizing or pain anxiety following acute orthopedic injury. We used partial correlations to examine associations between PTSD symptom clusters (re-experiencing, avoidance, negative alterations in cognitions and mood, and hyperarousal) and pain outcomes (pain intensity and physical dysfunction) controlling for pain catastrophizing. We used hierarchical regressions to evaluate unique associations between PTSD clusters and pain outcomes. In exploratory analysis, we examined the indirect effects of PTSD symptoms on pain outcomes through catastrophizing. RESULTS: Hierarchical linear regressions indicated that hyperarousal was uniquely associated with greater pain intensity with activity (ß = 0.39, p < 0.001, ΔR2 =0.06) and physical dysfunction (ß = 0.22, p = 0.04 ΔR2 =0.02). PTSD symptoms were still associated with pain with activity even with pain catastrophizing included in the models, and catastrophizing did not have a significant indirect effect on the relationship between PTSD and physical dysfunction (b=0.06, SEBoot=0.04, 95% CIBoot = [-0.003, 0.14]). Pain catastrophizing did largely account for the association between re-experiencing, avoidance, and negative alterations in cognitions and mood symptoms and pain at rest. CONCLUSIONS: Pain catastrophizing interventions may be best suited for limiting the impact of PTSD symptoms on pain at rest, but catastrophizing alone may not fully explain the relationship between PTSD symptoms and physical dysfunction after acute orthopedic injury. To prevent the negative association of PTSD symptoms, especially hyperarousal, on physical outcomes in acute pain populations, interventions may require more than solely targeting pain catastrophizing.

Optimizing the Implementation of a Lifestyle Dementia Prevention Intervention for Older Patients in an Academic Healthcare System.

Background: Interventions that promote healthy lifestyles are critical for the prevention of Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD). However, knowledge of the best practices for implementing AD/ADRD prevention in healthcare settings remains limited. Objective: We aimed to qualitatively identify barriers and facilitators to implementing a clinical trial of a novel lifestyle intervention (My Healthy Brain) in our medical center for older patients with subjective cognitive decline who are at-risk for AD/ADRD. Methods: We conducted focus groups with 26 healthcare professionals (e.g., physicians, psychology, nursing) from 5 clinics that treat older patients (e.g., memory care, psychiatry). Our qualitative analysis integrated two implementation frameworks to systematically capture barriers and facilitators to AD/ADRD prevention (Consolidated Framework for Implementation Science Research) that impact implementation outcomes of acceptability, appropriateness, and feasibility (Proctor's framework). Results: We found widespread support for an RCT of My Healthy Brain and AD/ADRD prevention. Participants identified barriers related to patients (stigma, technological skills), providers (dismissiveness of "worried well," doubting capacity for behavior change), clinics (limited time and resources), and the larger healthcare system (underemphasis on prevention). Implementation strategies guided by Expert Recommendations for Implementing Change (ERIC) included: developing tailored materials, training staff, obtaining buy-in from leadership, addressing stigmatized language and practices, identifying "champions," and integrating with workflows and resources. Conclusions: The results will inform our recruitment, enrollment, and retention procedures to implement the first randomized clinical trial of My Healthy Brain. Our study provides a blueprint for addressing multi-level barriers to the implementation of AD/ADRD prevention for older patients in medical settings.

Graded Exposure Therapy for Fear Avoidance Behaviour After Concussion (GET FAB): protocol for a multisite Canadian randomised controlled trial.

INTRODUCTION: Persistent symptoms after mild traumatic brain injury (mTBI) negatively affect daily functioning and quality of life. Fear avoidance behaviour, a coping style in which people avoid or escape from activities or situations that they expect will exacerbate their symptoms, maybe a particularly potent and modifiable risk factor for chronic disability after mTBI. This study will evaluate the efficacy of graded exposure therapy (GET) for reducing persistent symptoms following mTBI, with two primary aims: (1) To determine whether GET is more effective than usual care; (2) to identify for whom GET is the most effective treatment option, by evaluating whether baseline fear avoidance moderates differences between GET and an active comparator (prescribed aerobic exercise). Our findings will guide evidence-based care after mTBI and enable better matching of mTBI patients to treatments. METHODS AND ANALYSIS: We will conduct a multisite randomised controlled trial with three arms. Participants (n=220) will be recruited from concussion clinics and emergency departments in three Canadian provinces and randomly assigned (1:2:2 ratio) to receive enhanced usual care, GET or prescribed aerobic exercise. The outcome assessment will occur remotely 14-18 weeks following baseline assessment, after completing the 12-week treatment phase. The primary outcome will be symptom severity (Rivermead Post-concussion Symptoms Questionnaire). ETHICS AND DISSEMINATION: Informed consent will be obtained from all participants. All study procedures were approved by the local research ethics boards (University of British Columbia Clinical Research Ethics Board, University of Calgary Conjoint Health Research Ethics Board, University Health Network Research Ethics Board-Panel D). Operational approvals were obtained for Vancouver Coastal Health Research Institute and Provincial Health Services Authority. If GET proves effective, we will disseminate the GET treatment manual and present instructional workshops for clinicians. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov #NCT05365776.

Cannabis Co-Use Among Black Individuals with Chronic Pain Who Use Opioids: Associations with Other Substance Use and Pain Related Outcomes.

Background Black individuals with chronic musculoskeletal (MSK) pain tend to experience worse pain and opioid use-related outcomes, including other substance co-use, compared with non-Hispanic White individuals. Co-using cannabis with opioids could instigate a cascade of pain-related vulnerabilities and poor outcomes. Here, we test associations between cannabis/opioid co-use and pain-related outcomes among Black individuals with chronic MSK pain. Methods Black adults with chronic MSK pain who use opioids (N=401; 51.62% female, Mage=35.90, SD=11.03) completed online measures of pain intensity/interference, emotional distress, opioid dependence, and risky use of other substances. Results Compared with opioid use alone, opioid and cannabis co-use was associated with elevated anxiety and depression symptoms, opioid dependence, and risky substance use, but not pain. Conclusions Black individuals with chronic MSK pain who co-use opioids and cannabis warrant targeted interventions that address their needs. Tailored interventions could help address disparities in pain-related outcomes and opioid morbidity and mortality rates.

A Brief Mind-body Intervention Is Feasible and May Prevent Persistent Pain After Acute Orthopaedic Traumas: A Randomized Controlled Trial.

BACKGROUND: Approximately 20% to 50% of patients develop persistent pain after traumatic orthopaedic injuries. Psychosocial factors are an important predictor of persistent pain; however, there are no evidence-based, mind-body interventions to prevent persistent pain for this patient population. QUESTIONS/PURPOSES: (1) Does the Toolkit for Optimal Recovery after Injury (TOR) achieve a priori feasibility benchmarks in a multisite randomized control trial (RCT)? (2) Does TOR demonstrate a preliminary effect in improving pain, as well as physical and emotional function? METHODS: This pilot RCT of TOR versus a minimally enhanced usual care comparison group (MEUC) was conducted among 195 adults with an acute orthopaedic traumatic injury at risk for persistent pain at four geographically diverse Level 1 trauma centers between October 2021 to August 2023. Fifty percent (97 of 195) of participants were randomized to TOR (mean age 43 ± 17 years; 67% [65 of 97] women) and 50% (98) to MEUC (mean age 45 ± 16 years; 67% [66 of 98] women). In TOR, 24% (23 of 97) of patients were lost to follow-up, whereas in the MEUC, 17% (17 of 98) were lost. At 4 weeks, 78% (76 of 97) of patients in TOR and 95% (93 of 98) in the MEUC completed the assessments; by 12 weeks, 76% (74 of 97) of patients in TOR and 83% (81 of 98) in the MEUC completed the assessments (all participants were still included in the analysis consistent with an intention-to-treat approach). The TOR has four weekly video-administered sessions that teach pain coping skills. The MEUC is an educational pamphlet. Both were delivered in addition to usual care. Primary outcomes were feasibility of recruitment (the percentage of patients who met study criteria and enrolled) and data collection, appropriateness of treatment (the percent of participants in TOR who score above the midpoint on the Credibility and Expectancy Scale), acceptability (the percentage of patients in TOR who attend at least three of four sessions), and treatment satisfaction (the percent of participants in TOR who score above the midpoint on the Client Satisfaction Scale). Secondary outcomes included additional feasibility (including collecting data on narcotics and rescue medications and adverse events), fidelity (whether the intervention was delivered as planned) and acceptability metrics (patients and staff), pain (numeric rating scale), physical function (Short Musculoskeletal Function Assessment questionnaire [SMFA], PROMIS), emotional function (PTSD [PTSD Checklist], depression [Center for Epidemiologic Study of Depression]), and intervention targets (pain catastrophizing, pain anxiety, coping, and mindfulness). Assessments occurred at baseline, 4 and 12 weeks. RESULTS: Several outcomes exceeded a priori benchmarks: feasibility of recruitment (89% [210 of 235] of eligible participants consented), appropriateness (TOR: 73% [66 of 90] scored > midpoint on the Credibility and Expectancy Scale), data collection (79% [154 of 195] completed all surveys), satisfaction (TOR: 99% [75 of 76] > midpoint on the Client Satisfaction Scale), and acceptability (TOR: 73% [71 of 97] attended all four sessions). Participation in TOR, compared with the MEUC, was associated with improvement from baseline to postintervention and from baseline to follow-up in physical function (SMFA, baseline to post: -7 [95% CI -11 to -4]; p < 0.001; baseline to follow-up: -6 [95% CI -11 to -1]; p = 0.02), PROMIS (PROMIS-PF, baseline to follow-up: 2 [95% CI 0 to 4]; p = 0.045), pain at rest (baseline to post: -1.2 [95% CI -1.7 to -0.6]; p < 0.001; baseline to follow-up: -1 [95% CI -1.7 to -0.3]; p = 0.003), activity (baseline to post: -0.7 [95% CI -1.3 to -0.1]; p = 0.03; baseline to follow-up: -0.8 [95% CI -1.6 to -0.1]; p = 0.04), depressive symptoms (baseline to post: -6 [95% CI -9 to -3]; p < 0.001; baseline to follow-up: -5 [95% CI -9 to -2]; p < 0.002), and posttraumatic symptoms (baseline to post: -4 [95% CI -7 to 0]; p = 0.03; baseline to follow-up: -5 [95% CI -9 to -1]; p = 0.01). Improvements were generally clinically important and sustained or continued through the 3 months of follow-up (that is, above the minimum clinically important different [MCID] of 7 for the SMFA, the MCID of 3.6 for PROMIS, the MCID of 2 for pain at rest and pain during activity, the MCID of more than 10% change in depressive symptoms, and the MCID of 10 for posttraumatic symptoms). There were treatment-dependent improvements in pain catastrophizing, pain anxiety, coping, and mindfulness. CONCLUSION: TOR was feasible and potentially efficacious in preventing persistent pain among patients with an acute orthopaedic traumatic injury. Using TOR in clinical practice may prevent persistent pain after orthopaedic traumatic injury. LEVEL OF EVIDENCE: Level I, therapeutic study.

Clinician perspectives on characteristics and care of traumatic brain injury among asylum seekers and refugees.

PURPOSE: Traumatic brain injury (TBI) disproportionately affects asylum-seekers and refugees (ASR), although underdiagnosed and undertreated. Our study assesses clinicians' perspectives on characteristics and management of TBI among ASR, with the hope of improving TBI management in this population. MATERIALS AND METHODS: We conducted six focus groups of 16 clinicians across two academic medical centers in Boston, Massachusetts, United States. Clinicians in our sample included primary care clinicians, nurse practitioners, social workers, psychologists, neurologists, psychiatrists, and neuropsychologists. We analyzed the qualitative data following a hybrid inductive-deductive thematic analytic approach. RESULTS: Clinicians characterized TBI among ASR as mostly mild and remote, involving head strikes, perpetrated predominantly by interpersonal violence and strangulation-related brain injury, and involving symptom overlap with mental health diagnoses, challenging diagnosis. Clinicians also described inadequate screening, the importance of connecting the physical and psychological symptoms of the brain injury rather than viewing them as distinct, and addressing diagnosis-related stigma and shame. Finally, they discussed lack of TBI-specific knowledge among providers and patients alike, and resource limitations affecting the continuum of care for this population. CONCLUSION: Integrating clinicians' perspectives in caring for this population allows us to best meet their needs, including in TBI recovery.

Traumatic Brain Injury (TBI) disproportionately affects asylum-seekers and refugees (ASR).ASR predominantly sustain TBI through head strikes, but strangulation-related brain injury is under-recognized and must be assessed alongside common TBI mechanisms of injury.Current challenges in assessing TBI in ASR include mild and remote presentation of TBI, perpetration in contexts of interpersonal violence, and symptom overlap with mental health diagnoses.Rehabilitation professionals can enhance TBI-related assessment, care, and communication by enhancing education of ASR patients and clinicians who serve them. This includes implementing use of, and improving, existing screening tools.

A Mind-Body Intervention to Improve Physical Activity for Patients with Chronic Hip-Related Pain: Protocol for a Mixed Methods Study.

BACKGROUND: Pain and dysfunction persist for most patients following hip-related pain treatment. Additionally, individuals with hip-related pain are typically less physically active than individuals without hip pain, despite evidence that regular physical activity reduces chronic musculoskeletal pain. Poor psychological health is common in patients with hip-related pain and further reinforces low physical activity. Mind-body interventions can improve psychological health and activity levels but have yet to be integrated to provide comprehensive, psychologically informed care for patients with hip-related pain. Thus, we are using the NCCIH intervention development framework to develop Helping Improve PSychological Health (HIPS), a novel, multimodal mind-body intervention to improve physical activity for individuals with hip-related pain and poor psychological health. METHODS: We will recruit physical therapists (N = 20) and patients with hip-related pain (N = 20) to participate in 60 min qualitative interviews (focus groups with therapists; one-on-one interviews with patients). Using these data, we will develop the initial HIPS intervention and provider training materials. One physical therapist will be trained to deliver the HIPS intervention to five participants in an open pilot trial. Participants will attend six 30 min HIPS intervention sessions. We will collect quantitative data on satisfaction, improvement, and physical activity, alongside qualitative exit interviews with participants and the physical therapist in order to refine the HIPS intervention and provider training materials. RESULTS: This study has been approved by the MGB IRB. We aim to develop and test the initial feasibility of the HIPS intervention in an open pilot trial. The findings from this project will inform a subsequent feasibility RCT.

Positive affect expression during a play interaction and psychological health among older adults living with cognitive impairment and their adult children.

OBJECTIVES: We examined the extent to which positive affect expression in play interactions between adult children and their parents living with cognitive impairment was associated with lower depressive symptoms and mental health difficulties for both dyad members. Gender differences in positive affect expression were also examined. METHOD: Dyads (N = 126) self-reported their depressive symptoms and mental health difficulties. Dyad members later engaged in a video-recorded play interaction together, and their positive affect expression was observationally coded by trained coders in terms of 'enjoyment', 'laughter', and 'positive affect towards partner'. RESULTS: Findings from mixed models using the Actor Partner Interdependence Model showed that one's partner's positive affect was associated with one's own lower depressive symptoms. There were no significant actor effects or effects of role (parent vs. child). Results also revealed that women expressed more positive affect and had greater mental health difficulties, but not depressive symptoms. We found that one's partner's positive affect expressions were more associated with women's mental health than men's mental health. CONCLUSION: Positive affect expression may be a useful indicator of psychological health in parent-child relationships in which the parent has cognitive impairment. Positive affect may be useful to target in supportive, dyadic, psychosocial interventions.

Psychosocial Distress Among Certified Nursing Assistants in Long-Term Care During the COVID-19 Pandemic: A Social Ecological Model Informed Scoping Review.

OBJECTIVES: This scoping review maps the literature on psychosocial distress and coping among nursing assistants (CNAs) in long-term care facilities (LTC) during the COVID-19 pandemic onto the Social Ecological Model (SEM) of Occupational Stress. METHODS: Searches yielded 862 unique studies. Inclusion criteria were sample CNAs or equivalent in LTC; includes psychosocial variable; and collect data from February 2020-. A multi-phasic, meta-synthesis was used to synthesize qualitative data. RESULTS: We identified 20 studies (13 quantitative, 7 qualitative) conducted between March 2020 and December 2021 from 14 countries. Prevalence rates were reported for perceived stress (31-33%; n = 1 study), post-traumatic stress (42%; n = 1), anxiety (53%; n = 1), depression (15-59%; n = 2), suicidal thoughts (11-15%; n = 1), and everyday emotional burnout (28%; n = 1). Qualitative studies identified factors contributing to psychosocial distress and coping at each SEM level (i.e. individual, microsystem, organization, and peri-/extra-organizational). Quantitative studies primarily measured factors relating to psychosocial distress and coping at the individual and organizational levels. CONCLUSIONS & CLINICAL IMPLICATIONS: This review identifies specific targets for intervention for psychosocial distress among CNAs in LTC at multiple levels, including job clarity; workload; facility culture; community relations; and policy. These intervention targets remain relevant to the LTC industry beyond the context of the COVID-19 pandemic.

Emotional distress, social support, and functional dependence predict readiness for hospital discharge in a prospective sample of cognitively intact cardiac arrest survivors.

AIM: To inform screening, referral and treatment initiatives, we tested the hypothesis that emotional distress, social support, functional dependence, and cognitive impairment within 72 hours prior to discharge predict readiness for discharge in awake and alert cardiac arrest (CA) survivors. METHODS: This was a secondary analysis of a prospective single-center cohort of CA survivors enrolled between 4/2021 and 9/2022. We quantified emotional distress using the Posttraumatic Stress Disorder Checklist-5 and PROMIS Emotional Distress - Anxiety and Depression Short Forms 4a; perceived social support using the ENRICHD Social Support Inventory; functional dependence using the modified Rankin Scale; and cognitive impairment using the Telephone Interview for Cognitive Status. Our primary outcome was readiness for discharge, measured using the Readiness for Hospital Discharge Scale. We used multivariable linear regression to test the independent association of each survivorship factor and readiness for discharge. RESULTS: We included 110 patients (64% male, 88% white, mean age 59 [standard deviation ± 13.1 years]). Emotional distress, functional dependence, and social support were independently associated with readiness for discharge (adjusted ß's [absolute value]: 0.25-0.30, all p < 0.05). CONCLUSIONS: Hospital systems should consider implementing routine in-hospital screening for emotional distress, social support, and functional dependence for CA survivors who are awake, alert and approaching hospital discharge, and prioritize brief in hospital treatment or post-discharge referrals.

Diverse learners: learning disabilities and quality of life following mind-body and health education interventions for adults with neurofibromatosis.

PURPOSE: Neurofibromatosis (NF) is associated with low quality-of-life (QoL). Learning disabilities are prevalent among those with NF, further worsening QoL and potentially impacting benefits from mind-body and educational interventions, yet research on this population is scarce. Here, we address this gap by comparing NF patients with and without learning disabilities on QoL at baseline and QoL-related gains following two interventions. METHODS: Secondary analysis of a fully-powered RCT of a mind-body program (Relaxation Response Resiliency Program for NF; 3RP-NF) versus an educational program (Health Enhancement Program for NF; HEP-NF) among 228 adults with NF. Participants reported QoL in four domains (Physical Health, Psychological, Social Relationships, and Environmental). We compare data at baseline, post-treatment, and 12-month follow-up, controlling for intervention type. RESULTS: At baseline, individuals with NF and learning disabilities had lower Psychological (T = -3.0, p = .001) and Environmental (T = -3.8, p < .001) QoL compared to those without learning disabilities. Both programs significantly improved all QoL domains (ps < .0001-0.002) from baseline to post-treatment, regardless of learning disability status. However, those with learning disabilities exceeded the minimal clinically important difference in only one domain (Psychological QoL) compared to three domains in individuals without learning disabilities. Moreover, those with learning disabilities failed to sustain statistically significant gains in Psychological QoL at 12-months, while those without learning disabilities sustained all gains. CONCLUSION: Adults with NF and learning disabilities have lower Psychological and Environmental QoL. While interventions show promise in improving QoL regardless of learning disabilities, additional measures may bolster clinical benefit and sustainability among those with learning disabilities.

Palliative Care Interventions for Persons With Neurodegenerative Disease: A Scoping Review of Clinical Trial Study Design Features.

Background: Within palliative care research, best practice guidelines to conduct scientifically rigorous clinical trials for neurodegenerative diseases are underexplored. This patient population experiences unique challenges, including fluctuations in cognitive capacity, care partner (CP) and proxy involvement, and high adverse events (AEs), that necessitate special consideration when designing clinical trials. Objective: The objective of this study was to describe and identify clinical trial design features that have been documented in studies involving a neuropalliative intervention for persons with neurodegenerative diseases, highlighting features that have been adapted for this unique patient population. Design: We conducted a scoping review of clinical trials with a neuropalliative intervention for persons with neurodegenerative disease. We searched Cochrane, Web of Science, EMBASE, Scopus, and PubMed (MEDLINE) databases for articles published in English between 1950 and 2023. Two reviewers screened, extracted, and synthesized data from the included articles. A third reviewer adjudicated instances of conflict. The data were analyzed using a thematic framework approach. Results: Of 1025 texts, 44 articles were included. Seven study design features were analyzed: (1) consent, (2) proxies and CPs, (3) recruitment strategies, (4) retention strategies, (5) choice of comparator, (6) AEs, and (7) internal validity. This scoping review found disparities in study design features around structured consent, proxies and CPs, comparators, and AEs. Conclusions: To date, neuropalliative care clinical trials have had varied study designs and the majority of research has focused on dementia. Research guideline development for high-quality neuropalliative care clinical trials is greatly needed across the range of neurodegenerative diseases. To increase the scientific rigor of clinical trials and neuropalliative care, we recommend a standardized capacity assessment for consent, defining conditions for the CP, proxy, and AEs, systematizing appropriate comparators, and outlining preemptive recruitment and retention strategies to address the broader unpredictable challenges of palliative care research.

"I completely shut down": A mixed methods evaluation of the fear-avoidance model for young adults with a recent concussion and anxiety.

PURPOSE/OBJECTIVES: The fear-avoidance model is a well-established framework for understanding the transition from acute to chronic pain. However, its applicability to concussions is not yet well understood. Here, we conduct the first mixed methods analysis of the fear-avoidance model in young adults with a recent concussion and co-occurring anxiety and assess the model's alignment with their lived experience. RESEARCH METHOD/DESIGN: We conducted a mixed methods analysis using a cross-sectional parallel design. Seventeen participants completed questionnaires corresponding with the elements in the fear-avoidance model (e.g., pain catastrophizing, avoidance, disability, anxiety, depression, etc.) and participated in semistructured interviews probing their experiences following their concussion between March 2021 and February 2022. We calculated bivariate correlations for quantitative data and analyzed the qualitative data using hybrid inductive-deductive thematic analysis. RESULTS: Quantitative results demonstrated strong and medium-sized correlations among theorized relationships within the fear-avoidance model (rs = .40-.85) with the majority being statistically significant. Qualitative results provided substantial convergent and complementary support (e.g., bi-directionality of some relationships, associations between nonadjacent model components, centrality of anxiety in symptom persistence) for the application of the fear-avoidance model to concussions. Findings highlighted additional factors (social factors and post-injury endurance patterns) relevant to this population. CONCLUSION/IMPLICATIONS: The fear-avoidance model is a useful lens for understanding the lived experience of young adults with a recent concussion and co-occurring anxiety. Psychosocial treatment for this population would benefit from focusing on the interplay of concussion symptoms, anxiety, depression, disability, and pain-related fear, offering adaptive confrontation strategies, and addressing the interpersonal impact of concussion. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

"I Wish I Had That!": A Qualitative Analysis of Psychosocial Treatment Preferences Among Young Adults With Recent Concussion and Anxiety.

OBJECTIVE: To assess psychosocial treatment preferences and factors that may affect treatment participation among young adults with a recent concussion and co-occurring anxiety. DESIGN: In-depth, semi-structured individual qualitative interviews, followed by thematic analysis using a hybrid deductive-inductive approach. SETTING: Academic medical center in the US Northeast. PARTICIPANTS: Seventeen young adults (18-24y) who sustained a concussion within the past 3-10 weeks and reported at least mild anxiety (≥5 on the Generalized Anxiety Disorder-7 questionnaire). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary outcomes include preferences for program content (eg, topics and skills), delivery modality, format, and barriers and facilitators to participation. RESULTS: We identified 4 domains characterizing participants' perceptions of and preferences for treatment. (1) Program content: Participants preferred a program early after injury that included psychoeducation and coping skills (eg, activity pacing, deep breathing, mindfulness). (2) Therapeutic processes: Participants preferred a person-centered approach in which clinicians normalized anxiety postconcussion and reassured them of recovery. (3) Program logistics: Participants endorsed that a brief, virtual program would be acceptable. They preferred access to program components through multiple modalities (eg, audio, video) and accommodations to manage concussion symptoms. (4) Barriers and facilitators to participation: Barriers included acute concussion symptoms (eg, screen sensitivity), time constraints, and forgetting sessions. Facilitators included a program that is flexible (format, scheduling), personalized (self-chosen mode for reminders, measure of accountability), and accessible (ie, advertising through health care professionals or social media). CONCLUSIONS: Participants need psychosocial support that normalizes their experiences and provides education and coping tools. Treatments should be accessible, flexible, and person centered. Psychosocial treatments meeting these preferences may help optimize the recovery of young adults with recent concussion and anxiety.