NeuroRehabilitation - Volume 52, issue 1

Authors: Perrin, Paul B.

Article Type: Editorial

Abstract: Research on caregiving after neurotrauma and neurological disability critically extends the focus beyond individuals with neurological conditions to family, friends, and significant others who also are greatly impacted. This article introduces a thematic issue of NeuroRehabilitation on the topic with 10 articles that coalesce around the three approaches of (a) literature reviews, (b) empirical studies, and (c) caregiver intervention studies. This introductory article introduces each of these articles and synthesizes them to chart important future directions for research on caregiving after neurotrauma and neurological disability including: (a) a focus on evidence-based common factors caregiver interventions, (b) dissemination and implementation …science approaches to imbedding caregiver interventions into health care systems, and (c) cultural considerations in the context of caregiving. This thematic issue helps rehabilitation clinicians incorporate more of a systems perspective to improve the functioning not only of individuals with neurological conditions but also their caregivers. Show more

Keywords: Caregiving, neurotrauma, neurological condition, disability, neurorehabilitation

DOI: 10.3233/NRE-228027

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 1-7, 2023

Authors: Kjeldgaard, Amanda | Soendergaard, Pernille Langer | Wolffbrandt, Mia Moth | Norup, Anne

Article Type: Review Article

Abstract: BACKGROUND: Caregivers of individuals with traumatic (TBI) or non-traumatic (nTBI) brain injuries are at risk of significant caregiver burden. Consequently, it is crucial to examine predictors of caregiver burden to enable early identification and intervention. OBJECTIVE: To examine predictors of caregiver burden in caregivers of individuals with TBI/nTBI. METHODS: A scoping review was conducted in the bibliographic databases PubMed, EMBASE (Ovid) and APA PsycInfo (EBSCO). Search terms included: ‘acquired brain injur*’, ‘traumatic brain injur*’, ‘brain injur*’, ‘non-traumatic brain injur*’, or ‘stroke*’ combined with ‘burden’, ‘caregiver burden’, ‘perceived burden’, or ‘caregiver strain’. The search was limited to …articles written in English and published in academic journals between 2000 and March 2022. EndNote was used to manage the references and identify duplicates. RESULTS: Twenty-four studies were included. Care recipient-related predictors of caregiver burden included more severe injuries, functional disabilities (including decreased physical and neuropsychological functioning), and worse mental health. Caregiver-related predictors included more time spent caregiving, worse mental health, and unmet needs. For several predictor variables, evidence was mixed or vague. CONCLUSION: The results highlight which caregivers are at risk of caregiver burden and point to several areas of potential intervention to prevent caregiver burden. Future research should explore the relationship between characteristics of the caregiver and caregiver burden, including coping style, problem-solving techniques, and personality, as these have been sparsely investigated and are potentially modifiable through intervention. Further research is needed to elucidate if burden can be prevented by interventions targeting caregivers at risk. Addressing these gaps may clarify the link between caregiver burden and predictor variables and assist in development of interventions that may prevent burden. Show more

Keywords: Traumatic brain injury, non-traumatic brain injury, caregiver, caregiver burden, scoping review

DOI: 10.3233/NRE-220134

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 9-28, 2023

Authors: Hines, Emily A. | Farr, Ellen M. | Rhudy, Lori M. | Chesak, Sherry S. | Kinzelman Vesely, Elissa A. | Esterov, Dmitry

Article Type: Review Article

Abstract: BACKGROUND: Acquired brain injury (BI) is associated with negative mental health outcomes for both people with BI, their caregivers (CG), and patient-CG dyads, which may be mitigated through increased resilience. However, little is known regarding the efficacy of resilience interventions focused on CGs of individuals with BI, as well as dyads, which may be instrumental for positive outcomes. OBJECTIVE: To systematically review the evidence of the efficacy of resilience interventions focused on CGs and/or dyads of individuals with BI. METHODS: A search of MEDLINE, Embase, APA PsycINFO, CINAHL with Full Text, Scopus, SCIE, and ESCI was …conducted. Each title and abstract were screened by two authors independently. Each full text review, study data extraction, and study quality assessment was performed independently by two authors. Study quality was assessed using the Joanna Briggs Institute (JBI) critical appraisal tool. RESULTS: Out of 11,959 articles retrieved, 347 full text articles were assessed for review and 18 met inclusion criteria for data extraction and quality assessment. Resilience interventions were stratified into 5 different categories based on the type of intervention. CONCLUSION: This systematic review suggests that dyadic/CG resilience interventions may improve mental health related outcomes, but conclusions were limited secondary to heterogenous outcomes and lack of a standardized resiliency construct. Future efforts are compulsory to create a standardized resiliency construct and associated outcomes focused on persons with BI, their CGs, and dyads. Show more

Keywords: Brain injury, traumatic brain injury, acquired brain injury, dyad, caregiver, resiliency, resilience

DOI: 10.3233/NRE-220125

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 29-46, 2023

Authors: Rasmussen, Mari S. | Howe, Emilie I. | Andelic, Nada | Soberg, Helene L.

Article Type: Research Article

Abstract: BACKGROUND: A strength-based approach in the rehabilitation after traumatic brain injury (TBI) is recommended for patients and their families. However, further exploration of the complexity of individual and family factors is needed. OBJECTIVE: To explore the associations between individual protective resources in patients and family members and the overall family functioning using a strength-based approach. METHODS: Secondary analysis of data collected at baseline in a randomized controlled trial. Structural equation modeling with two latent constructs and six observed variables was performed. Outcome measures included the Resilience Scale for Adults, the Mental Component Summary (SF-36), the General …Self-Efficacy Scale, and the Family Adaptability and Cohesion Evaluation Scale-IV. RESULTS: Hundred and twenty-two participants (60 patients, 62 family members) with a mean age of 43 years were included at a median of 11 months post-injury. The final model demonstrated a strong covariance (coefficient = 0.61) between the latent Protective construct and Family functioning. Model-fit statistics indicated an acceptable fit to the data. CONCLUSION: Higher levels of protective resources (resilience, self-efficacy, and mental HRQL) were positively associated with family functioning. These resources should be further assessed in patients and their families, to identify factors that can be strengthened through TBI rehabilitation intervention. Show more

Keywords: Traumatic brain injury, resilience, psychological, self-efficacy, family, mental health

DOI: 10.3233/NRE-220131

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 47-58, 2023

Authors: Klyce, Daniel W. | Merced, Kritzianel | Erickson, Alexander | Neumann, Dawn M. | Hammond, Flora M. | Sander, Angelle M. | Bogner, Jennifer A. | Bushnik, Tamara | Chung, Joyce S. | Finn, Jacob A.

Article Type: Research Article

Abstract: BACKGROUND: People with traumatic brain injury (TBI) can lack awareness of their own emotions and often have problems with emotion dysregulation, affective disorders, and empathy deficits. These impairments are known to impact psychosocial behaviors and may contribute to the burden experienced by care partners of individuals with TBI. OBJECTIVE: To examine the associations of emotional awareness, emotional functioning, and empathy among participants with TBI with care partner burden. METHOD: This multisite, cross-sectional, observational study used data from 90 dyads (participants with TBI and their care partner) 1-year post-injury. Participants with TBI completed the Difficulty with Emotional …Regulation Scale (DERS; Awareness, Clarity, Goals, Impulse, Nonacceptance, and Strategies subscales); PTSD Checklist-Civilian Version; NIH Toolbox Anger-Affect, Hostility and Aggression Subdomains; PHQ-9; GAD-7; and the Interpersonal Reactivity Index (empathic concern and perspective taking subscales). Care partners completed the Zarit Burden Inventory (ZBI) and provided demographic information. RESULTS: Care partners were predominately female (77%), and most were either a spouse/partner (55.2%) or parent (34.4%). In an unadjusted model that included assessments of emotional awareness, emotional functioning, and empathy of the participant with TBI, the DERS-Awareness and NIH-Hostility subscales accounted for a significant amount of variance associated with care partner burden. These findings persisted after adjusting for care partner age, relationship, education, and the functional status of the participant with TBI (β= 0.493 and β= 0.328, respectively). CONCLUSION: These findings suggest that high levels of hostility and low emotional self-awareness can significantly affect the burden felt by TBI care partners. Show more

Keywords: Traumatic brain injury, alexithymia, emotional awareness, caregiving

DOI: 10.3233/NRE-220128

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 59-69, 2023

Authors: Pugh Jr., Mickeal | Perrin, Paul B. | Watson, Jack D. | Kuzu, Duygu | Tyler, Carmen | Villaseñor, Teresita | Lageman, Sarah K. | Moreno, Oswaldo A.

Article Type: Research Article

Abstract: BACKGROUND: Parkinson’s disease (PD) caregivers, particularly in Latin America, may experience high levels of affiliate stigma due to their association with a person having a disability. The most common measure used of this construct in the literature, the Affiliate Stigma Scale, was validated using non-standard and questionable methods. OBJECTIVE: The purpose of this study was to investigate the factor structure and psychometric properties of the Spanish version of the Affiliate Stigma Scale with PD caregivers in Mexico using more widely accepted psychometric approaches including confirmatory and exploratory factor analyses (CFAs, EFAs). METHODS: A sample of 148 …PD caregivers from Mexico completed this measure, as well as indices of caregiver burden and anxiety. RESULTS: Initial CFAs revealed that the data did not fit either the originally proposed one-factor or three-factor structures. An EFA was then conducted which was unable to discern any factor structure. Upon instituting a stepwise removal alpha-if-item-deleted process, a 5-item Affiliate Stigma Scale Spanish Short Form was retained with an adequate Cronbach’s alpha, good convergent validity, and a Short Form CFA generally indicating adequate fit. CONCLUSIONS: The new Spanish Affiliate Stigma Scale Short Form holds promise for more appropriately measuring affiliate stigma likely in general but particularly in Spanish and among PD caregivers. The Short Form can assist not only in assessing levels of caregiver affiliate stigma, but in creating novel interventions to help support caregivers and decrease stigma. Show more

Keywords: Parkinson’s disease, caregiver, affiliate stigma, Mexico

DOI: 10.3233/NRE-210105

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 71-81, 2023

Authors: Kuzu, Duygu | Perrin, Paul B. | Pugh Jr., Mickeal

Article Type: Research Article

Abstract: BACKGROUND: Despite the widespread international use of the Affiliate Stigma Scale in the context of disability, much research on its psychometric properties has taken dubious statistical approaches. OBJECTIVE: The aim of this study was to examine the psychometric properties of the Affiliate Stigma Scale in a sample of Turkish spinal cord injury/disorder (SCI/D) caregivers. METHODS: Participants completed the Affiliate Stigma Scale, Zarit Burden Interview, and Generalized Anxiety Disorder-7. This study conducted a series of confirmatory factor analyses (CFAs) of the Turkish Affiliate Stigma Scale using its originally theorized 3-factor structure and a 1-factor …structure, as well as an exploratory factor analysis (EFA) to refine the scale items to create a short form, with a final CFA of the items in the short form. RESULTS: The 3-factor and 1-factor CFAs of the 22 items from the Affiliate Stigma Scale suggested poor fit to the data across every fit index. An EFA yielded four factors, although the patterns of item loading onto the factors did not map in any discernible way to the original subscales theorized by the scale creators. A 1-factor CFA with the six items loading onto factor 1 of the EFA showed much better fit indices, with most achieving good or adequate fit. CONCLUSION: The current study supports a 1-factor solution with a short form comprised of six items, at least in Turkish and with SCI/D caregivers. Show more

Keywords: Affiliate Stigma Scale, Spinal cord injury and disorders, Caregiving, Turkey, Psychometrics

DOI: 10.3233/NRE-210127

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 83-91, 2023

Authors: Martindale-Adams, Jennifer Lynn | Zuber, Jeffrey | Burns, Robert | Nichols, Linda O.

Article Type: Research Article

Abstract: BACKGROUND: Parents often provide care to adult children veterans with polytrauma, traumatic brain injury, and/or post-traumatic stress disorder. OBJECTIVE: This two-arm randomized clinical trial compared interventions to help parent caregivers improve their depression, anxiety, and burden and manage care by decreasing troubling and concerning behaviors. METHODS: Interventions were six one-hour structured one-on-one behavioral sessions (REACH) or six 30-minute prerecorded online educational webinars. Both focused on knowledge, strategies for care, and coping, but REACH sessions were targeted, interactive, and skills-based. Quantitative and qualitative data were collected by telephone. Quantitative analyses included chi-squared test or independent samples t …-test and repeated measures mixed linear modeling, with theme development for qualitative data. RESULTS: There were 163 parent caregivers, mostly mothers. During six months, participants in both arms improved significantly in depression, anxiety, burden, and reported veteran troubling and concerning behaviors. REACH caregivers showed a group by time improvement in concerning behaviors. Benefits included resources, self-reflection, not feeling alone, new skills, improved self-efficacy, and helping others. Specific concerns include exclusion from military and veteran care briefings and concern for the future. CONCLUSION: The positive response to both interventions provides opportunities for organizations with varying resources to provide support for parent caregivers. Interventions need to be targeted to parents’ particular concerns and needs. Show more

Keywords: Military, veterans, parenthood/parent-adult child relations, caregivers, families

DOI: 10.3233/NRE-220126

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 93-108, 2023

Authors: Juengst, Shannon B. | Wright, Brittany | Driver, Simon | Calhoun, Stephanie | Muir, Aimee | Dart, Georgianna | Goldin, Yelena | Lengenfelder, Jean | Bell, Kathleen

Article Type: Research Article

Abstract: BACKGROUND: Problem-Solving Training (PST) during inpatient rehabilitation could provide care partners the skills needed to manage their life roles after discharge. OBJECTIVE: Determine the feasibility of PST+ Education versus Education for care partners of adults with traumatic brain injury (TBI) during inpatient rehabilitation. METHODS: We conducted a multisite randomized feasibility trial across three sites. We present recruitment rates, reasons for refusal to participate, and reasons for non-completion of interventions. We measured client satisfaction, participant engagement, and fidelity for both interventions. We compared change in depressive symptoms and caregiver burden between PST and Education groups. …RESULTS: Though the interventions were generally feasible, recruitment and retention rates were lower than anticipated largely due to the COVID-19 pandemic. Participants who completed >3 sessions were less likely to be employed full-time and more often spouses and co-residing. Length of inpatient rehabilitation stay was correlated with number of sessions completed. We observed potential benefits of PST over Education, specifically for reducing depression symptoms and caregiver burden. CONCLUSION: High satisfaction, engagement, and fidelity, overall recruitment and retention, and positive change in outcomes suggest that PST is generally feasible and beneficial for care partners of persons with TBI. Adaptations, such as developing a 3-session version of PST, could improve feasibility. Show more

Keywords: Caregiver, care partner, problem-solving training, brain injuries, behavioral intervention

DOI: 10.3233/NRE-220129

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 109-122, 2023

Authors: Rhudy, Lori M. | Hines, Emily A. | Farr, Ellen M. | Esterov, Dmitry | Chesak, Sherry S.

Article Type: Research Article

Abstract: BACKGROUND: Practice guidelines and research results emphasize the need for dyadic interventions targeting psychosocial outcomes such as depression, anxiety, social function, physical function, and health-related quality of life. Resilience interventions have been proposed as one strategy to influence these outcomes. OBJECTIVE: The objective of this observational pilot study was to determine the feasibility and acceptability of the Resilient Living program among persons with stroke or brain tumor (BT) admitted for comprehensive acute inpatient rehabilitation and/or their family caregivers. A secondary aim was to gather preliminary data to assess the effects of the program on quality of life, stress, …anxiety, physical function, sleep disturbance, fatigue, resilience, dyadic coping, and caregiver role overload. METHODS: The Resilient Living program is a psychosocial intervention with a focus on building resilience skills. Feasibility and acceptability outcomes were assessed at the end of the study. Quantitative outcome measures were collected at baseline, 12 weeks, and 6 months post the intervention. RESULTS: Eight patients and eight caregivers completed the study. The intervention was feasible with this population. Participants found the intervention useful and appreciated the flexibility of an online program; however, finding time to engage in it was challenging. Recruitment of eligible patients with acquired brain disorders and their caregivers as a dyad was challenging. CONCLUSION: The study confirms prior research suggesting that interventions targeting resilience are feasible, but larger studies with more rigorous methods are needed to appreciate the influence of resilience interventions in persons with brain disorders and their caregivers. Further research is needed to identify the characteristics of those most likely to benefit from resilience interventions and the optimal timing of such interventions. Show more

Keywords: Acquired brain injury, stroke, brain tumor, caregiver, family caregiver, resilience, mindfulness, dyad, brain injury

DOI: 10.3233/NRE-220127

Citation: NeuroRehabilitation, vol. 52, no. 1, pp. 123-135, 2023