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.

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.

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.

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.

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.

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.

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.

Measuring Neurobehavioral Disabilities Among Severe Brain Injury Survivors: Reports of Survivors and Proxies in the Chronic Phase.

Background: Neurobehavioral disability (NBD) has a major influence on long-term psychosocial outcome following acquired brain injury, as it affects not only the survivor of the brain injury, but the whole family. Objectives: To investigate (1) the frequency of NBD among survivors of severe brain injury measured by the Danish version of the St Andrew's-Swansea Neurobehavioural Outcome Scale (SASNOS) rated by patients and proxies, (2) factors associated with NBD, and (3) concordance between reports of NBD completed by patients and proxies. Methods: SASNOS was administered at an outpatient unit as a part of a follow-up assessment after discharge from intensive neurorehabilitation. SASNOS consists of five factors describing the following domains: Interpersonal Behavior, Cognition, Aggression, Inhibition and Communication, and both the patient and a proxy were asked to complete the questionnaire. Data collection was conducted over a period of 2 years, and 32 patients and 31 proxies completed the questionnaire. Mean time since injury was 19.4 months (10.0 SD). Most patients were male (68.8%), and most proxies were female (58.1%). Most of the patients had suffered a traumatic brain injury (68.8%). Results: A fourth of this patient group reported themselves below the normal range on the major domains of Interpersonal Behavior and Cognition. Significant associations between proxies' reports and time since injury, cohabitant status, and the patient's score on the Extended Glasgow Outcome Scale were found. Furthermore, significant differences were found between patient and proxy ratings. Proxies rated patients as having fewer problems on the Interpersonal Behavior domain, and more problems in relation to Cognition. Cognition was the only domain, where patients rated themselves higher indicating fewer problems, compared with their proxies. On both the Aggression and Communication domains, proxies rated patients higher indicating fewer problems than the patients themselves. Conclusion: Danish brain injury survivors experienced NBD as measured by SASNOS. Differences were found between patient and proxy ratings in relation to Cognition and Interpersonal Behavior. The NBDs identified can affect the survivor's ability to reintegrate and participate in activities of daily living, emphasizing how a systematic assessment is required.