Assessment of visual problems after acquired brain injury: a survey of current practice in Danish hospitals.

OBJECTIVES: To explore current hospital practice in relation to the assessment of vision problems in patients with acquired brain injury. DESIGN: A survey study. SUBJECTS: A total of 143 respondents from hospital settings, with background in occupational therapy and physical therapy, participated in the survey. METHODS: The survey questionnaire, developed collaboratively by Danish and Norwegian research groups, encompassed 22 items categorically covering "Background information", "Clinical experience and current practice", "Vision assessment tools and protocols", and "Assessment barriers". It was sent out online, to 29 different hospital departments and 18 separate units for occupational therapists and physiotherapists treating patients with acquired brain injury. RESULTS: Most respondents worked in acute or subacute hospital settings. Few departments had an interdisciplinary vision team, and very few therapists had formal education in visual problems after acquired brain injury. Visual assessment practices varied, and there was limited use of standardized tests. Barriers to identifying visual problems included patient-related challenges, knowledge gaps, and resource limitations. CONCLUSION: The study emphasized the need for enhanced interdisciplinary collaboration, formal education, and standardized assessments to address visual problems after acquired brain injury. Overcoming these challenges may improve identification and management, ultimately contributing to better patient care and outcomes in the future.

Psychometric properties of the Danish version of the Caregiver Burden Scale: Investigating predictors and severity of burden after stroke, spinal cord injury, or traumatic brain injury.

OBJECTIVE: To investigate (i) psychometric properties of the Danish version of the Caregiver Burden Scale, (ii) predictors of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury, and (iii) severity of caregiver burden, and compare level of severity of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury. DESIGN: Cross-sectional study. PARTICIPANTS: Pooled sample of 122 caregivers. METHODS: Psychometric properties including internal consistency, floor and ceiling effects, inter-item and item-total correlation were investigated using the Caregiver Burden Scale. Severity of burden was compared using Fisher's exact test and ANOVA, and predictors of burden were investigated using multiple linear regression models. RESULTS: The total burden score exhibited good internal consistency (α = 0.93), with no floor or ceiling effects. Longer time as a caregiver was a significant predictor of higher total score. The majority (52.2%) reported a low level of caregiver burden (below cut-off of 2.00). Mean scores on the Caregiver Burden Scale were not significantly different among caregivers across diagnostic groups. Differences were found when comparing spinal cord injury caregivers with brain injury caregivers (traumatic brain injury and stroke, collectively), χ2(2) = 6.38, p = 0.04, as spinal cord injury caregivers were more likely to report low levels of burden. CONCLUSION: Good psychometric properties were reported, and most caregivers reported a low level of burden, and longer time as a caregiver was associated with higher burden. Consequently, the Caregiver Burden Scale is a valid measure to use when measuring burden in caregivers of stroke, spinal cord injury, and traumatic brain injury patients.

Convergent and discriminant validity of the Minimal Eating Observation Form - version II: a cross-sectional study.

BACKGROUND: The Minimal Eating Observation Form - Version II (MEOF-II) is a brief and easy to use screening tool for eating difficulties, that is psychometrically robust. The aim of this study was to explore convergent (measuring similar constructs) and discriminant (measuring somewhat different constructs) validity of the MEOF-II to other validated dysphagia specific, activity and participation related instruments. METHODS: In this cross-sectional study, participants (n = 100, mean age 72, n = 42 women), diagnosed with either chronic pulmonary disease, Parkinson´s disease, Multiple Sclerosis, or stroke were recruited from rehabilitation centres. Patient-reported outcomes and clinical-rated assessments, capturing eating ability in general and swallowing in specific, included: The Dysphagia Handicap Index (DHI), the 4-question test (4QT), the Minimal Eating Observation Form - II, the Volume - Viscosity Swallow Test (V-VST), Flexible Endoscopic Evaluation of Swallowing (FEES) documented according to the Penetration-Aspiration Scale (PAS). Type of oral intake was documented using the Functional Oral Intake Scale (FOIS). Activities in daily living was assessed with Barthel index (BI). Spearman's correlation coefficient was used to analyze associations. The MEOF-II total score was hypothesised to have moderate correlations (r ≥ 0.3) with the other assessments, besides with PAS and FOIS (weak correlations, r < 0.3). RESULTS: In total 78 participants had any type of eating difficulties (MEOF-II), 69 reported dysphagia (4QT), 62 had dysphagia according to V-VST, 29 showed evidence of penetration/aspiration (PAS), and 31 participants had decreased oral intake ability (FOIS). The MEOF-II total score had moderate correlations with DHI, BI, 4QT, V-VST volume, and weak correlations with V-VST dysphagia and viscosity, PAS, and FOIS. Comparing a prior hypothesised correlation strengths against empirical findings showed that 83% of the hypothesised correlations were correct. CONCLUSIONS: The MEOF-II is a holistic and objective screening tool that can indicate the need for further assessment and corresponds well with the persons' subjective experiences. MEOF-II does not specifically assess the risk for penetration/aspiration.

A manual-based family intervention for families living with acquired brain or spinal cord injury: a qualitative study of families' experiences.

PURPOSE: To explore families' experiences of participating in a family intervention, targeting families living with the consequences of acquired brain injury (ABI) or spinal cord injury (SCI). MATERIALS AND METHODS: Individuals with ABI or SCI and their family members were recruited from a randomised controlled trial investigating the effectiveness of the manual-based family intervention, which consisted of eight weekly sessions. Semi-structured interviews were conducted with 16 families (n = 33). The data were analyzed through reflexive thematic analysis. RESULTS: One central theme was developed "A sense of belonging together again", describing the value of the reciprocal format of the family intervention, where individuals with ABI or SCI and their family members gained new insights into each other while building up their relationship. The central theme was supported by three additional themes: "Strengthened communication and emotional control", "Acknowledging the changed life situation" and "Being seen as a whole person". CONCLUSIONS: The family intervention supported the families to strengthen family cohesion and to be capable to manage the changed life situation. The findings emphasize the importance of a family-centered approach in neurorehabilitation, and how healthcare professionals play a significant role in facilitating families to achieve a balanced level of family cohesion.

Acquiring an injury to the brain or spinal cord constitutes a severe life change for the entire family and therefore a family-centered approach in neurorehabilitation is crucial.As individuals with injury and their family members often feel disconnected during rehabilitation, healthcare professionals play a significant role in facilitating the family to share their experiences with each other to strengthen family cohesion.Not all families are aware of their need for support. Thus, healthcare professionals should pay particular attention to identify the individual family's needs for being supported.During conversations with families, healthcare professionals should focus on the balance between separateness and togetherness in the family system to support the families in achieving a balanced level of family cohesion.

Defining a Treatment Model for Self-Management of Fatigue in Rehabilitation of Acquired Brain Injury Using the Rehabilitation Treatment Specification System.

Systematic treatment descriptions to standardize and evaluate management of fatigue after acquired brain injury (ABI) are lacking. The purpose of this multi-phase qualitative study was to formulate a treatment model for promoting self-management of fatigue in rehabilitation of ABI based on practice-based understandings and routines. The study was conducted in a community-based rehabilitation center in Denmark. The model was defined using the Rehabilitation Treatment Specification System. Phase 1 comprised co-production workshops with five service providers (occupational therapists, physiotherapists, and a neuropsychologist) to elicit preliminary treatment theories. In Phase 2, four case studies were conducted on management of fatigue in vocational rehabilitation. Interviews (n = 8) and treatment log entries (n = 76) were analyzed thematically to specify treatment targets and active ingredients. The treatment model comprised five main components: (i) Knowledge and understanding of fatigue, (ii) Interoceptive attention of fatigue, (iii) Acceptance of fatigue, (iv) Activity management, and (v) Self-management of fatigue. For each component, lists of targets and active ingredients are outlined. In conclusion, management of fatigue includes multiple treatment components addressing skills, habits, and mental representations such as knowledge and attitudes. The model articulates treatment theories, which may guide clinical reasoning and facilitate future theory-driven evaluation research.

Investigating the Effectiveness of a Family Intervention after Acquired Brain or Spinal Cord Injury: A Randomized Controlled Trial.

(1) Background: Acquired brain injury (ABI) or spinal cord injury (SCI) constitutes a severe life change for the entire family, often resulting in decreased quality of life (QoL) and increased caregiver burden. The objective of this study was to investigate the effectiveness of a family intervention in individuals with ABI or SCI and in their family members. (2) Methods: An RCT of a family intervention group (FIG) vs. a psychoeducational group (PEG) (ratio 1:1) was performed. The FIG received an eight-week manual-based family intervention, and the PEG received one psychoeducational session. Self-reported questionnaires on QoL with the Mental Component Summary (MCS) and on caregiver burden with the Caregiver Burden Scale (CBS) were the primary outcomes. The data analysis involved linear mixed-effects regression models. (3) Results: In total, 74 participants were allocated randomly to the FIG and 84 were allocated randomly to the PEG. The FIG had significantly larger improvements on the MCS and significantly larger reductions on the CBS at the two-month follow-up than participants in the PEG (mean differences of 5.64 points on the MCS and -0.26 points on the CBS). At the eight-month follow-up, the between-group difference remained significant (mean difference of 4.59 points) on the MCS, whereas that on the CBS was borderline significant (mean change of -0.14 points). (4) Conclusions: Family intervention was superior to psychoeducation, with larger improvements in QoL and larger reductions in caregiver burden.

Measurement Properties of the Dutch Multifactor Fatigue Scale in Early and Late Rehabilitation of Acquired Brain Injury in Denmark.

Fatigue is a major issue in neurorehabilitation without a gold standard for assessment. The purpose of this study was to evaluate measurement properties of the five subscales of the self-report questionnaire the Dutch Multifactor Fatigue Scale (DMFS) among Danish adults with acquired brain injury. A multicenter study was conducted (N = 149, 92.6% with stroke), including a stroke unit and three community-based rehabilitation centers. Unidimensionality and measurement invariance across rehabilitation settings were tested using confirmatory factor analysis. External validity with Depression Anxiety Stress Scales (DASS-21) and the EQ-5D-5L was investigated using correlational analysis. Results were mixed. Unidimensionality and partial invariance were supported for the Impact of Fatigue, Mental Fatigue, and Signs and Direct Consequences of Fatigue, range: RMSEA = 0.07-0.08, CFI = 0.94-0.99, ω = 0.78-0.90. Coping with Fatigue provided poor model fit, RMSEA = 0.15, CFI = 0.81, ω = 0.46, and Physical Fatigue exhibited local dependence. Correlations among the DMFS, DASS-21, and EQ-5D-5L were in expected directions but in larger magnitudes compared to previous research. In conclusion, three subscales of the DMFS are recommended for assessing fatigue in early and late rehabilitation, and these may facilitate the targeting of interventions across transitions in neurorehabilitation. Subscales were strongly interrelated, and the factor solution needs evaluation.

Predictors of caregiver burden in caregivers of individuals with traumatic or non-traumatic brain injury: A scoping review.

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.

"Communication Is Not Exactly My Field, but It Is Still My Area of Work": Staff and Managers' Experiences of Communication With People With Traumatic Brain Injury.

PURPOSE: Communication between people with traumatic brain injury (TBI) and rehabilitation staff can be impacted by cognitive-communication disorders. Communication partner training (CPT) programs hold potential to improve communication between people with TBI and their communication partners. To tailor CPT programs to the rehabilitation environment, it is critical to understand the nature of communicative interactions for staff members. This study explores staff and managers' experiences of communication with people with TBI in the rehabilitation setting. METHOD: Individual semistructured videoconference interviews were carried out with staff members (n = 22) and managers (n = 4) varying in terms of professions and length of work experience. Interviews were guided by a phenomenological approach to gain comprehensive knowledge of staff and managers' lived experiences of communication with people with TBI. RESULTS: Four themes with nine subthemes were generated: (a) cognitive-communication disorders challenge interaction (communication is socially inappropriate, the diversity of presenting symptoms associated with TBI is demanding), (b) staff struggle in communication (there is a breakdown of communicative collaboration, communication increases staff's workload, emotional well-being of staff is at risk), (c) communication context is crucial (tasks affect communication, extending the professional roles), and (d) staff want communication knowledge and skills (needs vary according to work experience, access to tailored strategies, and feedback). CONCLUSIONS: Staff and managers experienced communication with people with TBI as highly demanding. The socially inappropriate communication in people with TBI was perceived to disturb the collaborative aspects of communication and create negative emotional impacts for staff. Staff experiences varied according to discipline, work experience, rehabilitation tasks, and facility. Consequently, staff and managers expressed a need for specific communication strategies to help them overcome the communicative challenges. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21579159.

Validity and reliability of the Danish version of the Pittsburgh Sleep Quality Index.

AIM: The Pittsburgh Sleep Quality Index is a widely used measure of sleep quality. The validity and reliability of the Danish version of the instrument has not yet been established. The aim of this study is to establish the internal consistency, test-retest reliability and convergent validity of the Danish version of the Pittsburgh Sleep Quality Index in adolescents. METHODS: Data were collected from 719 students from 17 different upper secondary schools. The sample consisted of 55% women, and the mean age of the sample was 17.87 (2.52) years. Data was collected on two occasions approximately 6 weeks apart using online surveys. Apart from the Pittsburgh Sleep Quality Index, the students also completed the five-item World Health Organization Well-being Index and the 10-item Perceived Stress Scale. For internal consistency the Cronbach's alpha was calculated, for test-retest reliability the interclass correlation coefficient was computed, and for validity the Pearson's correlation was calculated. RESULTS: The mean global Pittsburgh Sleep Quality Index score among Danish adolescents was 5.86 (3.13). The internal consistency for the Pittsburgh Sleep Quality Index was satisfactory with a Cronbach's alpha of 0.72. Test-retest reliability was adequate with an interclass correlation coefficient of 0.68. Finally, the Pittsburgh Sleep Quality Index showed large positive correlation with the 10-item Perceived Stress Scale (0.55) and a large negative correlation with the five-item World Health Organization Well-being Index (-0.59). CONCLUSIONS: The Danish version of the Pittsburgh Sleep Quality Index showed adequate reliability and validity among Danish adolescents.

Reducing fatigue following acquired brain injury: A feasibility study of high intensity interval training for young adults.

The aim was to evaluate feasibility of high-intensity interval training (HIIT) in fatigued adults (20-40 years old) with acquired brain injury (ABI). A prospective pre-post single-arm intervention trial was conducted, including 6-8 months follow-up assessment and interview. Intervention was 18 sessions of intermittent exercise on a cycle ergometer over six weeks. Six out of ten participants without motor impairments completed the intervention (all females, mean age = 30.2 years, months post-injury = 22). On average, participants attended 88% of sessions and achieved high intensity (93% of max heart rate). VO2max improved by 0.53 l/min (SD = 0.29), and participants continued exercising post-intervention. All participants were satisfied with HIIT, were more inclined to exercise, and reported positive effects of exercising for self-management of fatigue. Three sessions a week were demanding to some participants. Findings support feasibility of HIIT as a promising intervention for young adults with post-ABI fatigue.

Socioeconomic consequences of traumatic and non-traumatic spinal cord injuries: a Danish nationwide register-based study.

STUDY DESIGN: A nationwide population-based register study. OBJECTIVES: To investigate the socioeconomic consequences of traumatic (tSCI) and non-traumatic (ntSCI) spinal cord injuries (SCI) in relation to health care costs, risk of job loss, and divorce. SETTING: Denmark. METHODS: All survivors admitted for specialized SCI rehabilitation from 2008 to 2018 were included (n = 1751), together with their relatives (n = 3084). Control groups for the SCI group (n = 8139) and their relatives (n = 15,921) were identified. Data on socioeconomics up to 2 years before and up to 4 years after the injury year were included. RESULTS: Survivors of tSCI and ntSCI had significantly increased health care costs 2 years before injury compared to their controls, and increased health care cost was maintained 4 years after the injury (all p values < 0.0001). The SCI group had significantly increased risk of job loss (OR = 9.26; 95% CI: 7.70-11.15) and higher risk of divorce (OR = 1.44; 95% CI: 1.08-1.87) the 3 following years after injury compared to controls, but risk of divorce was only significant for the ntSCI group (OR = 1.58; 95% CI: 1.09-2.29). No significant differences on health care cost and job loss between the group of relatives of SCI survivors and their controls were found, except for the relatives (n = 1604) of SCI survivors <18 years old, where a higher risk of job loss was found (OR = 1.43, 95% CI 0.97-2.1). CONCLUSION: These results emphasize that socioeconomic consequences for survivors of both tSCI and ntSCI are pervasive and long-lasting.

Evaluation of Response Processes to the Danish Version of the Dutch Multifactor Fatigue Scale in Stroke Using the Three-Step Test-Interview.

Validated self-report measures of post-stroke fatigue are lacking. The Dutch Multifactor Fatigue Scale (DMFS) was translated into Danish, and response process evidence of validity was evaluated. DMFS consists of 38 Likert-rated items distributed on five subscales: Impact of fatigue (11 items), Signs and direct consequences of fatigue (9), Mental fatigue (7), Physical fatigue (6), and Coping with fatigue (5). Response processes to DMFS were investigated using a Three-Step Test-Interview (TSTI) protocol, and data were analyzed using Framework Analysis. Response processes were indexed on the following categories: (i) "congruent," response processes were related to the subscale construct; (ii) "incongruent," response processes were not related to the subscale construct; (iii) "ambiguous," response processes were both congruent and incongruent or insufficient to evaluate congruency; and (iv) "confused," participants did not understand the item. Nine adults were recruited consecutively 10-34 months post-stroke (median = 26.5) at an outpatient brain injury rehabilitation center in 2019 [five females, mean age = 55 years (SD = 6.3)]. Problematic items were defined as <50% of response processes being congruent with the intended construct. Of the 38 items, five problematic items were identified, including four items of Physical fatigue and one of Mental fatigue. In addition, seven items posed various response difficulties to some participants due to syntactic complexity, vague terms, a presupposition, and a double-barrelled statement. In conclusion, findings elucidate the interpretative processes involved in responding to DMFS post-stroke, strengthen the evidence base of validity, and guide revisions to mitigate potential problems in item performance.

Exploring Individual Differences as Predictors of Performance Change During Dual-N-Back Training.

In working memory training studies, individual trajectories are known to vary considerably between participants. A better understanding of how individual differences affect training outcomes is important because it might inform the development of more effective training interventions. This study explored how measures of working memory, intelligence, sustained attention, training motivation, mindset, psychological well-being, perceived stress, and sleep quality affect initial training performance and rate of change. A total of 217 upper secondary students completed 12 weeks of adaptive dual-n-back in a classroom setting. We analyzed their self-reported training data using latent growth curve modeling. We found that working memory and intelligence predicted both, initial training performance and rate of performance change. Sustained attention and sleep quality predicted initial performance, but not the rate of change. Furthermore, we observed that participants who completed the intervention scored significantly higher on measures of working memory and intelligence and reported lower levels of perceived stress and higher levels of sleep quality at baseline compared to dropouts. In general, our study supports the magnification account with higher ability individuals starting out at a higher performance level and showing a higher rate of performance change, and moreover, being more likely to adhere to the training protocol.

The Family Needs Questionnaire-Revised: a Rasch analysis of measurement properties in the chronic phase after traumatic brain injury.

PURPOSE: The main aim was to evaluate the measurement properties of the Family Needs Questionnaire-Revised (FNQ-R) in family members of individuals living with severe traumatic brain injury (TBI). METHODS: A total of 309 family members of individuals with severe TBI from Colombia, Denmark, Mexico, Norway and Spain participated. Rasch analysis of the FNQ-R and its 6 subscales was conducted. RESULTS: The Rasch analysis indicated a lack of fit of the 37-item FNQ-R to one single underlying construct of needs, and less than half of the items were invariant across the countries. Misfit of single items was revealed in the Need for Health Information, Need for Emotional Support, Need for Instrumental Support, Need for Professional Support and Need for Community Support Network subscales. Fit to the Rasch model was obtained after removal of misfitting items. The Involvement in Care subscale had too few items to be adequately assessed by the Rasch approach. CONCLUSION: The FNQ-R is a well-targeted instrument for assessing the unmet needs of caregivers regarding the need for health information, emotional support, professional support and a community support network after some scoring adjustment and the removal of misfitting items. Caution should be taken when comparing responses across countries.

Socioeconomic Consequences of Traumatic Brain Injury: A Danish Nationwide Register-Based Study.

This study examined if acquiring a traumatic brain injury (TBI) increases utilization of health care costs, increases risk of job loss for the patient and the closest relatives, and increases the risk of divorce 1 to 5 years following the injury. The study was conducted as a Danish national population-based register study with follow-up. Participants included a cohort of patients with TBI (n = 18,328) admitted to a hospital or treated in an emergency room (ER) and a matching control group (n = 89,155). For both the TBI group and the matching controls, relatives were identified, using national registers (TBI relatives: n = 25,708 and control relatives: n = 135,325). The outcome measures were utilization of health care costs (including hospital services, use of general practitioner and practicing specialists, and prescribed medication), risk of job loss, and risk of divorce among the TBI group and the control group and their relatives. Patients with TBI had significantly increased health care costs at baseline (i.e., the year before the injury) and during the following 4 years. Further, TBI relatives had a significantly higher utilization of health care costs the first and the third year after injury. The TBI group had a significant increased risk of job loss (odds ratio [OR] = 2.88; confidence interval [CI]: 2.70-3.07) and divorce (OR = 1.44; CI: 1.27-1.64) during the first 3 years following injury. In conclusion, the TBI group had significantly higher utilization of health care costs, both pre-morbidly and post-injury. Further, increased risk of job loss and divorce were found, emphasizing that the socioeconomic consequences of TBI last for years post-injury.

On the relation between dimensions of fatigue and depression in adolescents and young adults with acquired brain injury.

Complaints of fatigue following acquired brain injury (ABI) are often associated with depression. However, the nature of this relationship is unclear; furthermore, research among young people with ABI is limited. The objective of this cross-sectional study was (1) to investigate levels of depression in young outpatients with ABI (15-30 years old) and (2) to determine how different dimensions of fatigue relate to depression. Five dimensions of fatigue were assessed with the Multidimensional Fatigue Inventory (MFI-20), and depression was assessed with the Major Depression Inventory (MDI). Mann-Whitney U-tests and multiple regression analyses were conducted. The ABI group (n = 105), on average 23.7 years old (SD = 4.2) and 31 months post-injury (SD = 61), had elevated levels of fatigue and depression compared to a convenience sample of 160 healthy controls, all p's < .001. In multivariate analyses, the predominantly mental dimensions of fatigue, General Fatigue, Mental Fatigue, and Reduced Motivation, were independently associated with MDI, all p's < .01, while the physical dimensions, Physical Fatigue and Reduced Activity, were not. Distinctions within the concept of fatigue may be important in relation to depression, and future research could benefit from adopting a multidimensional approach in the development of more targeted and effective treatments of fatigue and depression following ABI.

Family needs at one and two years after severe traumatic brain injury: a prospective study of changes and predictors.

Objective: To assess changes in family needs between the first and second years after severe traumatic brain injury (sTBI) and to identify factors predicting unmet family needs.Design: Prospective Norwegian multicenter cohort study.Participants: The family members of 110 patients with sTBI were followed up at one year, and family members of 70 patients also at two years after trauma.Main measure: The Family Needs Questionnaire-Revised (FNQ-R).Results: Mean ratings of met family needs changed with a small decline between one year and two years post-injury on the FNQ-R subscales of Health Information and of Community Support Network. Proportions of needs met at one and two years ranged between 28% and 55%. Family needs most often met were from the Health Information subscale, and needs most often unmet were from the Emotional Support subscale. Caring for older patients, patients with more functional disabilities, female patients and being a spouse of a patient were associated with statistically significantly greater unmet family needs.Conclusion: Family members of survivors of traumatic brain injuries experience high levels of unmet needs, and rating of met needs tends to decline from one to two years post-injury. The identified predictors of unmet needs can contribute to guiding services following sTBI.

Correction to: A manual-based family intervention for families living with the consequences of traumatic injury to the brain or spinal cord: a study protocol of a randomized controlled trial.

After publication of our article [1] we were notified that a few duplicate sentences were included on page 7 of the manuscript.

A manual-based family intervention for families living with the consequences of traumatic injury to the brain or spinal cord: a study protocol of a randomized controlled trial.

BACKGROUND: Acquiring a traumatic injury constitutes a severe life change for the survivor, but also for the surrounding family. The paradigm of helping the family has primarily been on psychosocial interventions targeting caregivers. However, interventions including both survivor and caregivers should be an essential part of treatment, as the whole family's functional level and mental health can be affected. The current study protocol presents a manualized family intervention for families living with traumatic injury to the brain (TBI) or spinal cord (tSCI). The objectives are to investigate if the intervention improves quality of life (QoL) and decreases burden. It is hypothesized that the family intervention improves problem-solving strategies and family dynamics, which will reduce the burden. This may improve the caregivers' mental health, which will improve the support to the survivor and QoL. METHODS: The study is an interventional, two-arm, randomized controlled trial. During a 2-year period, a total of 132 families will be included. Participants will be recruited from East-Denmark. Inclusion criteria are (1) TBI or tSCI, (2) ≥ 18 years of age, (3) ≥ 6 months to ≤ 2 years since discharge from hospital, (4) ability to understand and read Danish, (5) cognitive abilities that enable participation, and (6) a minimum of one family member actively involved in the survivor's life. Exclusion criteria are (1) active substance abuse, (2) aphasia, (3) prior neurologic or psychiatric diagnose, and (4) history of violence. Within each disease group, families will be allocated randomly to participate in an intervention or a control group with a ratio 1:1. The intervention groups receive the family intervention consisting of eight sessions of 90 min duration. Families in the control groups receive 2 h of psychoeducation. All participants complete questionnaires on QoL, self-perceived burden, family dynamics, problem-solving strategies, mental health, and resilience at pre-intervention, post-intervention, and 6-month follow up. CONCLUSION: If the intervention is found to have effect, the study will contribute with novel knowledge on the use of a manual-based intervention including the entire family. This would be of clinical interest and would help families living with the consequences of TBI or tSCI. TRIALS REGISTRATION: ClinicalTrials.gov, NCT03814876. Retrospectively registered on 24 January 2019.