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OBJECTIVES: Caregiver strain often stems from unmet needs and is a risk factor for poor physical and psychological health. This study aims to identify factors associated with caregiver strain among middle-aged and older non-Hispanic Black and Hispanic male caregivers living with one or more chronic conditions. DESIGN: Data were analyzed from 418 male caregivers collected through Qualtrics Online Panels using an internet-delivered survey instrument (55.7% non-Hispanic Black, 44.3% Hispanic). Three ordinal regression models were fitted to assess factors associated with Caregiver Strain Scale tertiles: one for all men, one for non-Hispanic Black men only; and one for Hispanic men only. RESULTS: Similarities and differences were observed between the two groups in terms of factors associated with higher caregiver strain (i.e. lower disease self-management efficacy scores, providing ≥20â h of care per week). Uniquely for Non-Hispanic Black male caregivers, higher caregiver strain was associated with living with more children under the age of 18 (ß = 0.35, P = 0.011) and feeling more socially disconnected (ß = 0.41, P = 0.008). Uniquely for Hispanic male caregivers, higher caregiver strain levels were associated with experiencing lower pain levels (ß = -0.14, P = 0.040) and higher fatigue levels (ß = 0.23, P < 0.001). CONCLUSION: Findings from this study suggest that non-Hispanic Black and Hispanic men with chronic conditions have differing caregiving experiences. While bolstering social connectedness and caregiver support services may offset caregiver strain, tailored mental health and disease management programming are needed to meet the specific needs of non-Hispanic Black and Hispanic male caregivers.
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População Negra , Cuidadores , Doença Crônica , Hispânico ou Latino , Homens , Estresse Psicológico , Idoso , Criança , Humanos , Masculino , Pessoa de Meia-Idade , População Negra/psicologia , Cuidadores/psicologia , Doença Crônica/etnologia , Doença Crônica/psicologia , Autorrelato , Estresse Psicológico/etnologia , Estresse Psicológico/psicologia , Hispânico ou Latino/psicologia , Homens/psicologiaRESUMO
Participation restrictions, including restrictions in employment, recreational activities, and social interactions, and depression are common after traumatic brain injury (TBI) and can profoundly affect individuals. Participation and depression demonstrate complex relationships with each other and over time as individuals age. This study (1) identified differences in participation between different age groups; (2) determined if participation differed between those with and without clinically significant depressive symptoms within each age group; and (3) determined the effect of the interaction between age groups and the presence or absence of clinically significant depressive symptoms on participation in community-dwelling adults with a moderate-to-severe TBI. Results indicate that, among community-dwelling adults 5 years post-TBI, there are significant differences in participation between age groups across the lifespan, with younger adults generally having higher levels of participation. Individuals with clinically significant depressive symptoms participate less than individuals without it within the same age group, except for adults over 65 years-old. For the productivity domain, age interacted with depressive symptoms, such that the presence of clinically significant depressive symptoms was associated with a larger difference in productivity in early-to-middle adulthood. Based on these findings, depression should be considered when providing interventions for participation and vice versa.
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Lesões Encefálicas Traumáticas , Depressão , Emprego , Recreação , Participação Social , Adolescente , Adulto , Fatores Etários , Idoso , Lesões Encefálicas Traumáticas/epidemiologia , Lesões Encefálicas Traumáticas/fisiopatologia , Depressão/epidemiologia , Depressão/fisiopatologia , Emprego/estatística & dados numéricos , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
OBJECTIVE: To investigate within-person variability in daily self-reported emotional and fatigue symptoms and factors associated with high within-person variability among individuals with chronic traumatic brain injury (TBI). DESIGN: This was a prospective descriptive pilot study of n = 18 adults with chronic TBI (2-27 years post-injury) who owned and could independently use an Apple or Android device. METHODS: Participants completed daily assessments for 8 weeks via smartphone. Outcome measures included the Positive and Negative Affect Schedule, Patient Health Questionnaire-2, Generalized Anxiety Disorder-2, and a 7-point fatigue rating. We examined within-person variability over time using individual Multilevel Linear Models. We categorized within-person variability as High or Low based on individual standard deviations in relationship to sample standard deviation. RESULTS: Significant temporal within-person variability occurred for all measures. High variability was associated with more symptom reporting versus Low variability, and variability was associated with sex (High variability: 88% women; Low variability 90% men). CONCLUSIONS: Symptom measurement at a single time point among adults with chronic TBI may not capture day-to-day symptom fluctuation and may misidentify individuals in need of intervention. Assessing symptom profiles over time to capture temporal and individual variability may provide a more ecologically valid measure for managing long-term symptoms after TBI.
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Lesões Encefálicas Traumáticas/psicologia , Emoções/fisiologia , Fadiga/psicologia , Adulto , Lesões Encefálicas Traumáticas/complicações , Fadiga/complicações , Feminino , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estudos Prospectivos , AutorrelatoRESUMO
Individuals living with traumatic brain injury (TBI) are at an increased risk for developing chronic conditions such as diabetes, heart disease, and hypertension compared to the non-injured population. Furthermore, TBI-specific challenges such as physical limitations, pain, mood, and impaired cognition make it difficult to live a healthy lifestyle. Key health behaviors that contribute to overall health and well-being after TBI include physical activity and healthy eating, sleep, participation, eliminating substance abuse, and managing stress. The objectives of this narrative are to (1) describe the key components of a healthy lifestyle for individuals with a TBI, (2) identify the challenges that individuals with TBI face when attempting to establish these health behaviors, and (3) discuss approaches and supports to achieve these health behaviors after TBI, including the role of self-management.
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Lesões Encefálicas Traumáticas/reabilitação , Estilo de Vida Saudável , Lesões Encefálicas Traumáticas/psicologia , Exercício Físico , Comportamento Alimentar , Humanos , Autocuidado , SonoRESUMO
Introduction: Pharmacological strategies are often central to chronic pain management; however, pain treatment among non-Hispanic Black men may differ because of their disease profiles and healthcare interactions. However, less is known about pain medication prescribing and patients' satisfaction with pain treatment and management among non-Hispanic Black men with self-reported chronic pain. Purpose: This study assessed factors associated with non-Hispanic Black men being prescribed/recommended narcotics/opioids for chronic pain and their satisfaction with pain treatment/management. Methods: Data were analyzed from 286 non-Hispanic Black men with chronic pain who completed an internet-delivered questionnaire. Participants were recruited nationwide using a Qualtrics web-based panel. Logistic regression was used to identify factors associated with being prescribed/recommended narcotics/opioids for pain management treatment. Then, ordinary least squares regression was used to identify factors associated with their satisfaction level with the pain treatment/management received. Results: On average, participants were 56.2 years old and 48.3% were prescribed/recommended narcotics/opioids for chronic pain. Men with more chronic conditions (Odds Ratio [OR] = 0.57, P = 0.043) and depression/anxiety disorders (OR = 0.53, P = 0.029) were less likely to be prescribed/recommended narcotics/opioids. Men who were more educated (OR = 2.09, P = 0.044), reported more frequent chronic pain (OR = 1.28, P = 0.007), and were allowed to participate more in decisions about their pain treatment/management (OR = 1.11, P = 0.029) were more likely to be prescribed/recommended narcotics/opioids. On average, men with more frequent chronic pain (B = -0.25, P = 0.015) and pain problems (B = -0.16, P = 0.009) were less satisfied with their pain treatment/management. Men who were allowed to participate more in decisions about their pain treatment/management reported higher satisfaction with their pain treatment/management (B = 0.55, P < 0.001). Conclusion: Playing an active role in pain management can improve non-Hispanic Black men's satisfaction with pain treatment/management. This study illustrates the importance of patient-centered approaches and inclusive patient-provider interactions to improve chronic pain management.
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PURPOSE: To determine if commonly used caregiver burden assessments, Zarit Burden Interview(ZBI), Caregiver Reaction Assessment Scale(CRA), Caregiver Burden Inventory(CBI), and Caregiver Strain Index(CSI), provide clinicians and researchers with a comprehensive understanding of the burden that informal caregivers face. MATERIALS AND METHODS: Meaningful concepts, identified from these assessments, were linked to the most appropriate and precise International Classification of Functioning, Disability, and Health (ICF) code by experienced coders using a validated standardized ICF linking technique. Descriptive statistics were used to examine and compare the comprehensiveness of each assessment. RESULTS: A total of 120 meaningful concepts identified from 83 items, represented three of the four ICF domains: 1) Body functions (27%), 2) Activities and Participation (29%), and 3) Environmental factors (5%). Eleven percent of concepts were too vague to be coded, and 25% were clearly defined but not included in the ICF. Six of the 17 epidemiologic factors of caregiver burden were covered by the assessments combined. CONCLUSIONS: Linking commonly used caregiver burden assessments to the ICF and comparing the results to the epidemiologic factors of caregiver burden suggests that the assessments may not be capturing many of the factors associated with caregiver burden. This, in turn, may be hindering the development and implementation of effective caregiver education and interventions.
A comparison between the ICF coding results and the 'epidemiology of caregiver burden' suggests that the most common informal caregiver burden assessments are not comprehensive.Informal caregivers play a key role in the rehabilitation process. Knowledge of what aspects of burden are and are not included in each of the caregiver burden assessments will strengthen clinical decision-making about caregiver support, education, and interventions.A mixed-methods approach to caregiver burden assessment may provide a more comprehensive understanding of the burden.
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BACKGROUND: The increasing number of older adults with mental, behavioral, and memory challenges presents significant public health concerns. Reminiscence is one type of nonpharmacological intervention that can effectively evoke memories, stimulate mental activities, and improve psychological well-being in older adults through a series of discussions on previous experiences. Fully immersive virtual reality (FIVR) may be a useful tool for reminiscence interventions because it uses realistic virtual environments connected to a person's significant past stories. OBJECTIVE: This review aims to examine empirical evidence regarding the application of FIVR in reminiscence interventions, its usability and acceptability, and its effectiveness in assisting the intervention to achieve optimal outcomes. METHODS: We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) approach for scoping reviews. The PubMed, PsycINFO, Embase, CINAHL, Web of Science, ACM, and IEEE Xplore electronic databases were used for the search. We included peer-reviewed studies that used FIVR as an assistive tool for reminiscence interventions; were published between January 1, 2000, and August 1, 2022; reported empirical research; involved older adults as participants; and addressed health- and behavior-related outcomes or the feasibility and usability of FIVR. We used Endnote X9 to organize the search results and Microsoft Excel for data extraction and synthesis. RESULTS: Of the 806 articles collected from the databases and other resources, 11 were identified. Most of the studies involved participants aged between 70 and 90 years. Only 1 study did not involve those with cognitive impairments, whereas 3 specifically targeted people living with dementia. The results indicated that FIVR reminiscence interventions enhanced engagement and reduced fatigue. Although some studies have observed positive effects on anxiety, apathy, depression, cognitive functions, and caregiver burden reduction, these findings were inconsistent across other research. In addition, FIVR showed overall usability and acceptability with manageable side effects among older adults across various health conditions during reminiscence sessions. However, 1 study reported adverse feelings among participants, triggered by unpleasant memories evoked by the virtual reality content. CONCLUSIONS: The role of FIVR in reminiscence interventions remains nascent, with limited studies evaluating its impacts on older adults. Many of the reviewed studies had notable limitations: small sample sizes, absence of rigorous research design, limited assessment of long-term effects, lack of measures for health and behavior outcomes, and quality of life. Beyond these limitations, this review identified a list of future research directions in 6 categories. On the basis of the review findings, we provide practical recommendations to enhance FIVR reminiscence interventions, covering topics such as virtual reality content, device choice, intervention types, and the role and responsibility of facilitators.
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BACKGROUND: Alzheimer disease and Alzheimer disease-related dementia represent complex neuropathologies directly challenging individuals, their families, and communities in the United States. To support persons living with dementia, family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely used solution such as a consolidated web-based assistance or guidance platform is missing, compounding care challenges. OBJECTIVE: In preparation for designing an internet-based artificial intelligence-driven digital resource platform, a qualitative interview study was conducted to characterize the challenges and needs of family caregivers in the United States. METHODS: A semistructured interview topic guide in English was developed by engaging community partners and research partnerships. Family caregiver participants were purposefully recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. Interested individuals were first invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange a web-based in-depth interview via Zoom (Zoom Video Communications) from January 1, 2022, to May 31, 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants' demographics, socioeconomic characteristics, and caregiving information. Thematic analysis in a framework approach was used to identify and organize themes and the study findings. RESULTS: Following the prescreening of 150 eligible respondents, 20% (30/150) individuals completed both the interviews and follow-up survey, allowing for an in-depth look into the challenges, experiences, and expectations of primary caregivers of people living with dementia. Most participants (20/30, 67%) were primary caregivers of persons with dementia, and 93% (28/30) had provided care for at least a year. Most participants were aged >50 years (25/30, 83%), female (23/30, 77%), White (25/30, 83%), and non-Hispanic (27/30, 90%) and held a bachelor's or graduate degree (22/30, 73%). Collectively, all participants acknowledged challenges in caring for people living with dementia. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. In addition, participants identified the need for an integrative digital platform where information could be supplied to foster education, share resources, and provide community support, enabling family caregivers to improve the quality of care and reducing caregiver burden. CONCLUSIONS: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive web-based platform to mitigate current challenges within the caregiving role.
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Aim: This study aims to classify, describe, and compare the problems reported by care partners of adults with Alzheimer's disease (AD) and Lewy body dementia (LBD) using the International Classification of Functioning Disability and Health (ICF). Methods: Problems that care partners experience were collected during a problem-solving training intervention. The meaningful concepts were then extracted and linked to the ICF using a standardized linking technique. Results: 402 meaningful concepts were extracted from 128 problems reported by care partners. 79.4% of the concepts were linkable to the ICF. "Body functions" was most frequently addressed followed by "Activities and participation." LBD care partners reported more problems (M = 23.6 ± 13.4) on average than AD care partners (M = 19.4 ± 12.1). LBD care partners reported greater relative proportions of problems in mental function (emotional and sleep functions) than AD care partners. Conclusion: This study suggests that the experience of LBD care partners may include significantly more challenges and may be more emotionally demanding than the care experience of AD care partners. Interventions designed to support care partners of adults with dementia may need to be tailored to meet the needs of care partners based on the care receiver's type of dementia.
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PURPOSE: To develop the novel multidimensional health perceptions questionnaire (MHPQ), a self-reported assessment of health perceptions inclusive of (1) individuals beliefs about the causes and consequences of health conditions, benefits and barriers to maintaining and improving health, ability to accomplish health-related goals and control health circumstances, and the role of God and/or spirituality in health and healthcare, (2) anticipated discrimination in the healthcare systems, and (3) trust in healthcare providers and medicine, illustrated in our newly proposed Multidimensional Health Perceptions Conceptual Model. METHODS: We developed an initial MHPQß item set, corresponding to domains of our conceptual model, using a patient-centered outcomes development approach. This include literature review, expert and end-user feedback, translation and language validation (specifically to Latin American Spanish), and cognitive interviewing. RESULTS: The initial 104 items of MHPQß had excellent content validity, with a Content Validity Index of 98.1%. After expert (n = 13) feedback, translation and language validation, and cognitive interviewing among community-dwelling English-speakers (n = 5) and Spanish-speakers (n = 4), the final MHPQß comprised 93 items rated on a five-point agreement scale (1 = Strongly disagree to 5 = Strongly agree), with a reading grade level of 6th grade in English and 8th grade in Spanish. CONCLUSION: The MHPQß is a promising tool to assess individuals' health perceptions. It has excellent content validity and good reading accessibility. Future work will establish the factor structure and final item set of the MHPQ.
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OBJECTIVE: In rehabilitation research and practice, participation is defined as involvement in life situations and most often measured as frequency of engaging in these life situations. This narrow measurement approach overlooks that individuals perceive importance of and satisfaction with participation in activities in various life areas differently. The purpose of this study was to determine differences in meaningful participation (perceived importance and satisfaction) after moderate to severe traumatic brain injury (TBI) across age groups and to identify predictors of participation satisfaction. METHOD: Secondary data analysis of a TBI Model Systems substudy, including the Participation Assessment with Recombined Tools-Subjective (PART-S) that rates participation importance and satisfaction in 11 life areas that we grouped into three domains (i.e., productivity, social relations, out-and-about). We identified differences across age groups (i.e., 16 to 24 years, 25 to 44 years, 45 to 64 years, and 65 + years) and predictors of participation satisfaction. RESULTS: Participation satisfaction in and importance of the 11 life areas varied across age groups. In all age groups, participants rated relationships as being of medium or high importance more often than other life areas. Older adults reported the highest participation satisfaction across life areas, despite having the lowest participation frequency. Consistent predictors of participation satisfaction were cognitive functioning and frequency of participation in the domain examined. CONCLUSION: Participation importance, satisfaction, and frequency are related, yet distinct, dimensions of participation that should all be measured to adequately evaluate meaningful participation. Future research should explore interventions across the lifespan that target modifiable predictors, like functional cognition and access to frequent participation in important life activities. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
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Lesões Encefálicas Traumáticas , Satisfação Pessoal , Adolescente , Adulto , Idoso , Lesões Encefálicas Traumáticas/psicologia , Humanos , Longevidade , Qualidade de Vida/psicologia , Adulto JovemRESUMO
OBJECTIVE: Caregivers of individuals with Alzheimer's disease and related dementias (ADRD) often experience debilitating caregiver burden and emotional distress. To address these negative emotional consequences of caregiving, we will test and refine a strategy training intervention - Problem-Solving Training (PST) - that promotes self-efficacy and reduces caregiver burden and depressive symptoms. Previous research supports efficacy of PST; however, we do not know exactly how many PST sessions are needed or if post-training "boosters" are required to maintain PST benefits. Additionally, we translated and culturally-adapted PST into "Descubriendo Soluciones Juntos" (DSJ), our novel intervention for Spanish-speaking caregivers. METHOD: In this 2 × 2 factorial design randomized controlled trial, we will test remotely-delivered PST/DSJ sessions for both English- and Spanish-speaking caregivers of persons with ADRD to determine the optimal number of PST/DSJ sessions and ongoing "booster" sessions needed to best help caregivers navigate their current and future needs. AIMS: 1) Compare the efficacy of three vs. six PST/DSJ sessions each with and without booster sessions for decreasing caregiver burden and depression and enhancing caregiver problem-solving; 2) Identify key factors associated with efficacy of PST/DSJ, including age, gender, primary language, relationship to care recipient, and uptake of the PST/DSJ strategy. RESULTS: These results will establish guidelines needed for an evidence-based, culturally-adapted, and implementable problem-solving intervention to reduce caregiver stress and burden and improve caregiver health and well-being. CONCLUSION: This work promotes inclusion of diverse and underserved populations and advances therapeutic behavioral interventions that improve the lives of caregivers of individuals with chronic conditions.
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Doença de Alzheimer , Juniperus , Adulto , Cuidadores , Humanos , Resolução de Problemas , Ensaios Clínicos Controlados Aleatórios como Assunto , Projetos de PesquisaRESUMO
The purpose of our scoping review was to describe the current use of mHealth technology for long-term assessment of patient-reported outcomes in community-dwelling individuals with acquired brain injury (ABI). Following PRISMA guidelines, we conducted a scoping review of literature meeting these criteria: (1) civilians or military veterans, all ages; (2) self-reported or caregiver-reported outcomes assessed via mobile device in the community (not exclusively clinic/hospital); (3) published in English; (4) published in 2015-2019. We searched Ovid MEDLINE(R) < 1946 to 16 August 2019, MEDLINE InProcess, EPub, Embase, and PsycINFO databases for articles. Thirteen manuscripts representing 12 distinct studies were organized by type of ABI [traumatic brain injury (TBI) and stroke] to extract outcomes, mHealth technology used, design, and inclusion of ecological momentary assessment (EMA). Outcomes included post-concussive, depressive, and affective symptoms, fatigue, daily activities, stroke risk factors, and cognitive exertion. Overall, collecting patient-reported outcomes via mHealth was feasible and acceptable in the chronic ABI population. Studies consistently showed advantage for using EMA despite variability in EMA timing/schedules. To ensure best clinical measurement, research on post-ABI outcomes should consider EMA designs (versus single time-point assessments) that provide the best timing schedules for their respective aims and outcomes and that leverage mHealth for data collection.
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Lesões Encefálicas , Telemedicina , Adulto , Humanos , Vida Independente , Medidas de Resultados Relatados pelo Paciente , TecnologiaRESUMO
OBJECTIVE: To determine the feasibility of delivering an evidence-based self-management intervention, problem-solving training (PST), to care partners of individuals with traumatic brain injury (TBI), spinal cord injury (SCI), burn injury, or stroke during the inpatient hospital stay. DESIGN: In this single group pre-post intervention pilot feasibility study. SETTING: Inpatient rehabilitation or acute care and community. PARTICIPANTS: Care partners (spouse or partner, family member, friend who is in any way responsible for the health or well-being of the care recipient) of individuals with TBI, SCI, burn injury, or stroke (N=39). INTERVENTION: PST is a metacognitive self-management intervention that teaches individuals a global strategy for addressing self-selected problems. Participants received up to 6 sessions of PST in person or via telephone during their care recipient's inpatient stay. MAIN OUTCOME MEASURES: We measured feasibility of recruitment, intervention delivery, and postintervention use of a smartphone app (Care Partner Problem Solving [CaPPS]) and participant satisfaction (Client Satisfaction Questionnaire [CSQ]) and engagement (Pittsburgh Rehabilitation Participation Scale [PRPS]) with the intervention. RESULTS: Of 39 care partners approached, n=10 (25.6%) were ineligible. Of n=29 (74.4%) who were eligible, n=17 (58.6%) refused, and n=12 (41.4%) consented, of whom n=8 (66.7%) completed ≥3 PST sessions. Not perceiving any benefit was the most common reason for refusal, followed by no interest in research. Participants were very satisfied with PST (CSQ mean=3.35, SD=0.60), reported strong working alliance (Working Alliance Inventory mean=6.8, SD=3.1), and demonstrated very good engagement (PRPS mean=4.75, SD=1.41). CaPPS was downloaded and used by only n=3 participants. CONCLUSIONS: Delivering a self-management intervention to care partners during the care recipient's acute hospital stay is feasible for a subset of potential participants. Short lengths of stay, language fluency, and perceiving no potential benefit were noted barriers. Boosters via smartphone app have potential, but several barriers must first be overcome.
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Traumatic brain injury (TBI) often leads to immediate and chronic functional impairments that affect care partners, or those providing physical and/or emotional support to individuals with TBI. The many challenges associated with being a care partner often lead to caregiver burden and can compromise the well-being and quality of life of care partners and individuals with TBI under their care. Equipping care partners with problem-solving skills could facilitate and sustain their transition into this supportive role. Problem-solving training (PST) has demonstrated efficacy for providing such skills to care partners of individuals with TBI after discharge from inpatient rehabilitation. We propose that PST delivered to care partners during inpatient rehabilitation of individuals with TBI will provide care partners with the skills to manage their caregiving roles across the transition from hospital to home. Herein, we describe the methodology of a current randomized controlled trial that examines the feasibility and efficacy of PST plus TBI education compared to TBI education alone to improve care partner burden, emotional distress, and adaptive coping when delivered during the inpatient rehabilitation stay of individuals with moderate-severe TBI.