Experiences of caregivers of patients with traumatic brain injury during hospitalization in western China: A qualitative study
Family members frequently provide both physical and emotional support to patients. Previous studies have focused primarily on the experiences of patients with traumatic brain injury (TBI) and their caregivers during home care and the transition from hospital care to the community, with less emphasis on their experiences during acute hospital care immediately after TBI. This study aimed to explore the experiences of caregivers of patients with TBI during acute hospitalizations. A qualitative descriptive study using individual semistructured interviews was conducted at the trauma center of a tertiary hospital in western China. A purposive sample of 21 caregivers of patients with TBI were recruited. The interviews were conducted face to face in the inpatient ward from July to September 2023. Conventional content analysis was used to conduct the framework analysis. The experiences of caregivers were identified within three key themes: TBI consequences in patients (physical impairments, psychological distress, and cognitive dysfunctions), challenges of caregivers (physiological/emotional/economic burdens, conflicts, and concerns regarding recovery), and needs of caregivers (health information, medical services, and recovery expectations). This study highlights the experiences of caregivers of patients with TBI during hospital stays in western China. The challenges faced by caregivers and the needs of caregivers are multidimensional. Appropriate support should be provided to alleviate the burden of caregiving.
Alterations of cognitive functions post traumatic upper limb injuries in adults: A longitudinal study
Recent studies have demonstrated a possible association between cognitive impairments and traumatic upper limb injuries. This study aims to track the cognitive changes in individuals with such injuries. In this longitudinal study, 36 participants with traumatic upper limb injuries and 36 uninjured participants were enrolled. Cognitive functions were assessed using the Rey Auditory Verbal Learning Test (RAVLT) and the Stroop Color and Word Test (SCWT) over a period of 6 months, with evaluations conducted on three occasions: 1 month (T1), 3 months (T2), and 6 months (T3). The results revealed that participants with nerve injuries exhibited significantly lower RAVLT scores overall and at each time point (Overall: Wald χ = 7.99, < .05; T1: Wald χ = 7.61, < .05; T2: Wald χ = 5.95, < .05; T3: Wald χ = 5.76, < .05). In contrast, no significant impairment in RAVLT performance was observed in participants without nerve injuries. Additionally, the SCWT showed no significant differences between injured and uninjured participants over the six-month period ( > .05). In conclusion, traumatic nerve injuries to the upper limbs negatively affect memory, and this impairment does not spontaneously recover within six months.
The Buddy Program: High school students inform the design of a school-based peer support program for concussion
Prior research provides little guidance on how to support return to school post-concussion. Peer support may be one strategy to enable adolescents to return to school post-concussion. The purpose of this study was to explore what high school students preferred in a school-based peer support program post-concussion. We conducted a qualitative instrumental case study in one high school in Calgary, Canada. Seven semi-structured focus groups were conducted with 53 high school students (16 boys, 36 girls, 1 preferring not to disclose gender; median age = 16 years, range = 15-18 years). All adolescents were enrolled in a sport medicine course and had either a history of concussion ( = 20) or were interested in supporting peers who had sustained a concussion ( = 33). Focus group questions aimed to solicit which factors the adolescents believed should be considered in the development of a post-concussion peer support program. We analyzed the focus group transcriptions using content analysis. Adolescents preferred a one-on-one Buddy Program. A one-on-one environment would provide a trusting and confidential relationship between the student with a concussion and their buddy. Peer support could include social support, advocacy support for academic accommodations, tutoring support, and concussion education. In future, the Buddy Program should be piloted in high schools.
Microstructural brain changes following prospective memory rehabilitation in traumatic brain injury: An observational study
Prospective memory (PM) impairment is a common consequence of moderate-severe traumatic brain injury (TBI). Compensatory strategy training and rehabilitation (COMP) is the usual treatment of PM deficits through environmental modification and the use of assistive methods such as diaries and routines. The study intends to examine the changes in white matter integrity, as measured by advanced diffusion magnetic resonance imaging (dMRI) following COMP intervention in moderate-severe TBI patients. Nine COMP intervention and twelve routine care comparison cohort moderate-severe TBI patients were recruited from level 1 trauma centres in the Brisbane metropolitan area. Both groups were imaged at least one-month post-TBI for a baseline scan. COMP group was imaged again after a 6-week COMP intervention program and the comparison group was imaged again at least 6 weeks after the baseline scan. MRI scan included structural imaging and dMRI, which the latter fitted for the Neurite Orientation Dispersion and Density Imaging (NODDI) model. Only the comparison group had decreased Neurite Density Index in the major white matter tracts and increased isotropic diffusion in the fluid space between the cortical folds. Our results indicated that COMP intervention slowed down the neural degeneration in moderate-severe TBI patients as compared to routine medical care/rehabilitation.
Introducing a new social cognition online therapy: SoCoBo
Integrating technology-based therapies into existing treatment approaches has proven useful in the endeavour to improve impaired social cognition in patients with neurological diseases. To this end, we present a novel online-based therapy programme for the treatment of impairments of social cognition (""), particularly tailored for patients with acquired brain injuries (ABIs). This study was designed to investigate the online therapy's feasibility including processing time and acceptability in a healthy older sample as, according to previous studies, older individuals show subtle impairments of social cognition. Between 50 and 52 participants (depending on outcome measures) underwent pre-post assessments, completed one out of three therapy modules (emotion recognition, perspective taking, social problem-solving) over a period of four weeks (four sessions per week) and evaluated the therapy concerning feasibility, acceptability and content aspects with a newly developed questionnaire. All modules showed comparable ratings on a low to moderate level in terms of feasibility, acceptability and content aspects, which seems plausible due to the sample under investigation. Processing time of the three modules was comparable for psychoeducation (mean 17.45 min) and training sessions (mean 21.91 min). The results provided important indications for necessary adjustments regarding a subsequently completed randomized controlled trial involving patients with ABIs.
Experiences of loss and grief in adults with acquired brain injury (ABI): A systematic review and meta synthesis of qualitative studies
To synthesise the qualitative research related to the processes of loss and grief experienced by adults who have sustained a moderate to severe ABI.
Post-stroke fatigue severity is associated with executive dysfunction in chronic stroke
Following stroke, fatigue is highly prevalent and managing fatigue is consistently rated a key unmet need by stroke survivors and professionals. Domain-specific cognitive impairments have been associated with greater fatigue severity in earlier stages of stroke recovery, but it is unclear whether these associations hold in chronic (>2 years) stroke. The present cross-sectional observational study evaluates the relationship between domain-specific cognitive functioning and the severity of self-reported fatigue among chronic stroke survivors. Participants (= 105; mean age = 72.92, 41.90% female; mean years post-stroke = 4.57) were assessed in domains of attention (Hearts Cancellation test), language (Boston Naming Test), episodic memory (Logical Memory Test), working memory (Digit Span Backwards task), and executive functioning (set-shifting: Trail Making Test, Part B), as part of the OX-CHRONIC study, a longitudinal stroke cohort. Fatigue was assessed using the Fatigue Severity Scale. In a multiple linear regression analysis inclusive of above cognitive domains, only poorer executive functioning was associated with increased fatigue severity. This provides insight into the cognitive impairment profile of post-stroke fatigue long-term after stroke, with executive functioning deficits as the key hallmark.
Cognitive vulnerabilities and depressed mood in acquired brain injury
Acquired Brain Injury (ABI), an important cause of long-term disability, is associated with increased rates of depression in addition to common cognitive and physical consequences. Past research has linked post-ABI depression to injury severity (e.g., extent of physical or cognitive impairment) and premorbid mood problems. In the general (non-ABI) population, depression is associated with cognitive vulnerabilities that have informed the development of psychological interventions. In this observational study in a heterogeneous sample of individuals with chronic stage ABI, we examine two cognitive vulnerabilities - dysfunctional attitudes (DAs) and autobiographical memory specificity - and explore whether these are linked to depression symptoms and ongoing cognitive difficulties as in the general population. Compared to control participants, individuals with an ABI demonstrated increased endorsement of DAs and reduced specificity of autobiographical memory recall. Within the ABI group, cognitive vulnerability-depression symptom correlations were detected for an explicit measure of DAs, but not for a more implicit DA measure or for autobiographical memory specificity. While individual differences in injury severity and other factors likely obscured subtle relationships between mood and cognitive vulnerabilities, evidence of these vulnerabilities may be relevant to changes in identity and psychological interventions that target low mood in ABI.
Feasibility of Concussion Essentials: A multimodal intervention for persisting post-concussion symptoms among children and adolescents
This study examined the feasibility of "Concussion Essentials" (CE), an individualized, multimodal intervention for persisting post-concussion symptoms (pPCS). Thirteen 6-18 year-olds with pPCS at 1-month post-concussion, as determined by the Post Concussion Symptom Inventory - Parent Report (PCSI-P), completed education, physiotherapy, and psychology modules, for up to 8-weeks or until pPCS resolved. Intervention participants were matched to a longitudinal observational cohort who received usual care (n = 13). The study enrolled 70% of participants symptomatic on screening and the dropout rate was <30% between baseline and post-programme assessments (4-weeks to 3-months post-injury). Symptoms improved for 100% of CE participants, with the number of symptomatic items on the PCSI-P reducing from 4-weeks, Median (IQR) = 14.0 (8.0-19.0) to 3-months, Median (IQR) = 1.0 (0.0-5.0). Comparatively, symptoms improved for approximately half of matched usual care participants. CE participants (n = 8) and their parents (n = 11) completed acceptability questionnaires. Most parents (91%) agreed CE was acceptable for children with concussion. All participants agreed CE was appropriate for concussion, while approximately 88% agreed they enjoyed the intervention and would recommend CE to others. Findings suggest CE is a feasible and acceptable treatment for paediatric pPCS. Further investigation within a larger scale randomized clinical trial is warranted.
Ecological assessment of unilateral spatial neglect in immersive virtual reality: A multiple-case study to assess the feasibility and relevance of a Baking Tray Task
The assessment of unilateral spatial neglect (USN) primarily relies on paper-and-pencil tests, which do not fully represent daily life difficulties. To address this limitation, ecological tests, like the Baking Tray Test (BTT), have been developed. However, the original BTT identifies the presence of USN without providing information on its severity. In this aim, a new severity measure, the Centre of Mass (CoM), has been proposed, but its calculation in real environments poses challenges. Immersive virtual reality (VR) offers a promising solution for implementing a BTT in which measures are automatically calculated. This study aimed to assess the feasibility and relevance of an immersive VR BTT. Nineteen right brain-damaged patients with and without USN and 25 healthy participants were included. Group analyses showed an equivalence between the two BTT versions. Individual analyses revealed that all USN patients, except one, had pathological results in both versions. They also underlined pathological scores in patients without USN signs on paper-and-pencil tests. Finally, the CoM strongly correlated with paper-and-pencil tests and appeared to be a good indicator of USN severity. These findings support the relevance of implementing the BTT in an immersive VR version, suggesting its potential to enhance USN assessment.
Graded exposure therapy for adults with persistent symptoms after mTBI: A historical comparison study
Fear avoidance behaviour is associated with slow recovery from mild traumatic brain injury (mTBI). This study is a preliminary evaluation of graded exposure therapy (GET), which directly targets fear avoidance behaviour, for reducing post-concussion symptoms (PCS) and disability following mTBI. In a historical comparison design, we compared two groups from independent randomized trials. The GET + UC group (N = 34) received GET (delivered over 16 videoconference sessions) in addition to usual care (UC). The historical comparison group (N = 71) received UC only. PCS severity (Rivermead Post Concussion Symptoms Questionnaire; RPQ) and disability (World Health Organization Disability Assessment Schedule; WHODAS 2.0 12-item) were measured at clinic intake (M = 2.7, SD = 1.1 months after injury) and again at M = 4.9 (SD = 1.1) months after injury. Between-group differences were estimated using linear mixed effects regression, with a sensitivity analysis controlling for injury-to-assessment intervals. The estimated average change on the RPQ was -14.3 in the GET + UC group and -5.3 in the UC group. The estimated average change on the WHODAS was -5.3 in the GET + UC group and -3.2 in the UC group. Between-group differences post-treatment were -5.3 on the RPQ and -1.5 on the WHODAS. Treatment effects were larger in sensitivity analyses. Findings suggest that a randomized controlled trial is warranted.
Improving emotion regulation ability after brain injury: A systematic review of targeted interventions
Emotion dysregulation is a common sequela after a brain injury, and it can have serious negative consequences for individuals, families, and the community. A systematic review of the literature was conducted to identify and evaluate interventions designed to improve emotion regulation ability in adults with acquired brain injury. Studies were identified on ProQuest, PsycInfo, ScienceDirect, Scopus, and Web of Science; last searched on 3 August 2023. A review protocol was prospectively registered on PROSPERO (CRD42020218175). Risk of bias was assessed using the Cochrane Risk-of-Bias tool (version 2). Sixteen studies were included in the review comprising one case series, five pilot studies, four pre-post studies, and six RCTs. There was a total of 652 participants across studies. Fourteen of the sixteen studies reported statistically significant improvements in at least one emotional functioning variable. Ten studies reported medium-large effect sizes. Limitations included inconsistency in the measurement, reporting of intervention outcomes and processes. Future directions are discussed.
SMART-goal domains and goal attainment in an individualized, goal-oriented intervention for children with acquired brain injury and their families
ClinicalTrials.gov identifier: NCT04798859.
Enhancing task performance in adults with intellectual disability through modified goal management training and assistive technology with errorless learning: A randomized controlled trial
Individuals with intellectual disabilities often fail to learn complex tasks. Modified Goal Management Training (mGMT) or Errorless Learning combined with assistive technology (App + EL) can help. The goal is to demonstrate the effectiveness of mGMT and/or App + EL in learning complex tasks. We employed a randomized controlled crossover design. One group started with mGMT ( = 16), and the other with App + EL (N = 15). We compared their performance with that of a passive control group (N = 15). The training consisted of six sessions of 30 minutes each. Success was analyzed using the Goal Attainment Scale (GAS). Three different tasks were assessed before and after each intervention period: "Practiced", "Non-Practiced", or "Previously Practiced". Generalization was evaluated through neuropsychological tests. Results indicated that both interventions significantly improved "Practiced" tasks compared with "Non-Practiced" tasks and the control group. Crossing the intervention did not interfere with the stable performance on the "Previously Practiced" task. However, starting with mGMT reduced, but did not eliminate, the efficacy of App + EL after crossing, but this pattern was not observed for the reverse sequence. Only the Tower of London task documented improvements related to interventions. In conclusion, the mGMT and App + EL were effective in learning complex tasks and retaining performance after learning a second task. German Clinical Trials Register identifier: DRKS00021674.
The 20-item dysexecutive questionnaire after severe traumatic brain injury: Distribution of the total score and its significance
ClinicalTrials.gov identifier: NCT01437683..
The meaning of apathy in Huntington's disease: A qualitative study of caregiver perspectives
Although one of the most prevalent and impactful features of Huntington's disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven't forgotten me, but they have forgotten that they ever loved me, (4) I'm grieving for someone who hasn't died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.
Exploring the everyday impacts and memory intervention needs of people with transient epileptic amnesia: A qualitative study
People with transient epileptic amnesia (TEA) experience deficits in memory, however, little is known about their everyday experience of this, and no memory intervention studies have been conducted within this group. Using a two-part qualitative method, this study explored the lived experience of people with TEA and possible avenues for memory intervention. Fourteen people with TEA participated in either a focus group ( = 7) or an online survey ( = 7) to answer questions regarding their memory difficulties, impact on their lives, and strategies to mitigate these problems. Perceived barriers and facilitators to participating in a group memory intervention program were discussed. Thematic content analysis identified key themes regarding impacts on the individual and their relationships. Although some positive outcomes regarding family support and personal acceptance were described, most participants described negative impacts on relationships and mood. A range of strategies to mitigate memory problems were reported, although some people did not use any. Participants identified practical and socio-emotional advantages to memory intervention, with perceived barriers around individual applicability, preferences, and ability to engage. While individual preferences need to be considered, a group-based memory intervention may help address cognitive and mental health concerns, particularly for those newly diagnosed with TEA.
Personal growth in caregivers of persons with brain injury or multiple sclerosis
An existing scale of personal growth in caregivers of people with multiple sclerosis (MS) was expanded for use with an acquired brain injury (ABI) population, and was modified following additional psychometric analyses. A cross-sectional online survey was administered to 315 caregiving partners of persons with MS and 310 family caregivers of persons with ABI. Principal component analysis (PCA) performed on the original 32-item instrument yielded a 4-component, 17-item solution with correlated subscales with solid psychometric properties. Subscales were labelled . Secondary PCA conducted revealed three subscales (five items each) correlated moderately while the fourth, remained distinct. The sum of the three five-item subscales may serve as a total score. Reliability analysis yielded acceptable-to-high internal consistency. Comparisons of the PGS with existing instruments demonstrated its discriminant/convergent validity. Two kinds of latent class analyses were conducted on the 15-item PGS to identify three latent classes that spanned the neurologic groups, revealing that measurement invariance was held for the instrument in this sample. An instrument with sound psychometric properties was established, designed to assess personal growth in caregivers of individuals with ABI or MS. Future work should explore its value in other populations and as a metric of changes over time.
Fatigue and depression at 8 weeks and 1 year after bacterial brain abscess and their relationship with cognitive status
A bacterial brain abscess (BA) is a focal brain infection with largely unknown long-term implications. This prospective study assessed the frequency of fatigue and symptoms of depression at 8 weeks and 1 year after BA and examined the relationship between fatigue, depressive symptoms, and cognitive status. Twenty BA-patients (age 17-73; 45% female) were assessed for fatigue, depression, memory, and executive functions. Fatigue rates were 40-65% at 8 weeks and 25-33% at 1 year on various fatigue questionnaires. Patient Health Questionnaire indicated symptoms of depression in 10% at the 8-week follow-up only. Relevant comorbidities and vocational outcomes were not associated with fatigue or symptoms of depression. Mean fatigue scores improved significantly between the two-time points. Greater fatigue was related to subjective problems with working memory, inhibition, self-monitoring, and emotional control and worse objective verbal memory performance. Symptoms of depression were associated with one out of two fatigue measures. We conclude that fatigue is common in the first year after BA, and higher levels of fatigue are related to more cognitive problems. Symptoms of clinical depression were rare. These findings underscore fatigue as an important consequence of BA and emphasize the necessity for targeted rehabilitation interventions.
Understanding the role of illness perceptions in the relationship between cognitive and emotional difficulties after stroke
Emotional difficulties are common after stroke and up to one third of stroke-survivors develop post-stroke depression. Psychological distress in this population remains poorly understood, despite high prevalence and secondary implications. One established predictor of depressive symptoms after stroke is cognitive impairment, however, the mechanism underlying this relationship is unclear. This research investigated the potential role of stroke-related illness appraisals as a mediating factor to this known association. Seventy-seven participants, aged 45-94, were consecutively recruited from inpatient stroke units in Oxfordshire over 15-months and completed assessments of mood, cognition and illness appraisals, which were analyzed cross-sectionally. As expected, cognitive impairment significantly predicted depressive symptoms. Importantly, this relationship was shown to be mediated by perceptions of threat and control. Higher levels of cognitive impairment were significantly associated with lower perceived control and higher perceived threat, which partially explained the relationship between cognitive impairment and depressive symptoms. Perceptions of illness coherence were predictive of depressive symptoms but not associated with degree of cognitive impairment. This research has implications for the management of cognitive impairment in the early stages after stroke and suggests that illness appraisals may be an important intervention target for reducing depressive symptoms in patients with post-stroke cognitive impairments.
Group interventions for people with primary progressive aphasia and their care partners: Considerations for clinical practice
Primary progressive aphasia (PPA) describes a group of language-led dementias. Speech and language therapy is the main available intervention for people with PPA. Despite best practice recommendations for speech and language therapy to include access to group therapies (Volkmer et al, 2023a), research evidence to date has predominantly focused on delivery in individual sessions. The aim of this study was to gather the collective intelligence of expert speech and language therapists/pathologists delivering group therapy for people with PPA to synthesize guidance for clinicians. This paper describes a qualitative study using narrative synthesis methods. Data were collected using the Template for Intervention Description and Replication - TIDiER. Eight respondents described a total of 17 different groups. Respondents worked across healthcare, research clinics and third sector organizations in Australia, Canada, Spain, the USA and the UK. For the purposes of analysis, groups were divided into two main types: (1) groups delivering specific therapy interventions; and (2) groups providing broader opportunities for conversational practice and support. This initial synthesis of the current state of the art in PPA therapy groups highlights several important considerations around candidacy, content and ecological validity of delivering group intervention for people with PPA.