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.

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.

Prevention of pressure ulcers in patients undergoing subacute rehabilitation after severe brain injury: An observational study.

AIMS AND OBJECTIVES: To uncover efforts made by healthcare professionals to prevent pressure ulcers in patients with severe brain injury undergoing treatment at a subacute rehabilitation department. BACKGROUND: Pressure ulcers are a major burden for patients and also generate considerable healthcare costs. Pressure ulcers are, nevertheless, prevalent in both secondary care and primary care. DESIGN: In this qualitative study, we performed 24-hour observation on four patients undergoing rehabilitation for severe brain injury. An observation guide was developed inspired by the Braden Scale and Spradley's theory and methods. Observations were analysed using content analysis. Patricia Benner's aspects of clinical grasp were employed in the interpretation of the observations. FINDINGS: One overarching theme was identified: "Professionalism expressed by preventing intervention, involving the patient, employing clinical grasp and professional pride." Seven subcategories were summed up into the following three categories: organisation of clinical practice, professional assessment and interactions with the patient. CONCLUSION: The healthcare professionals' actions to prevent pressure ulcers consisted of attaining the necessary knowledge about pressure ulcer care and performing the activities. However, our observations revealed one important additional aspect: a very distinct impression that the healthcare professionals were committed to learning about the patients' former life and actively used this knowledge in their planning and provision of daily patient care. We believe this commitment has a very positive effect on prevention of pressure ulcers. RELEVANCE TO CLINICAL PRACTICE: Professional knowledge about prevention of pressure ulcer is a necessary requisite, but is not sufficient to ensure effective treatment. To transfer knowledge into practice, we recommend that patients' rehabilitation days be planned in such a manner that activities, mobilisation and training are conducted throughout the day and evening. We also recommend that professional staff are encouraged to seek information about the former life of patients with severe brain injury.