It is a challenge for both individuals and families when an illness or traumatic injury results in a severe spinal cord injury. The on-going physical impairments experienced by persons with spinal cord injury play themselves out over time. Few qualitative studies have explored how health, resilience and wellbeing interplay across time among persons living with the consequences of severe physical injuries. Thus, the aim of this study was to obtain a deeper understanding of how individuals with spinal cord injury reflect upon the efforts, strategies and agency they perform to sustain long term resilience and wellbeing. In this exploratory qualitative study, we conducted a thematic analysis of in-depth interviews with seven men who had lived with spinal cord injury for 2–32 years and who previously had undergone medical rehabilitation. The efforts revealed by the participants in normalising life with a spinal cord injury required continued flexibility, persistency and solution-focused adjustment, interpreted as processes documenting resilience. The participants were marshalling personal resources to handle challenges over time. They explained that they succeeded in maintaining health and wellbeing by manoeuvring between different strategies such as being self-protective and flexible as well as staying active and maintaining a positive attitude. Further, support from relational resources were of utmost importance emotionally, socially and when in need of practical assistance. When harnessing relational resources when needed, the participants underlined that balancing dependence and autonomy to remain a part of ordinary life was essential in staying emotionally stable. The findings of the present study show similarities to those of previous studies with regard to the participants’ attribution of their resilience and wellbeing to their innate personal abilities and strong connection to their family and friends. In addition, the current participants provide enlightening nuances and depth that expand our understanding of the construct of resilience by highlighting the importance of continuously exerting agency, willpower and strength through rational cognitive strategies to adjust and adapt to chronic and new challenges.
Oropharyngeal dysphagia (OD) is prevalent in the elderly and persons with complex medical conditions, resulting in considerable medical and psychosocial consequences and reduced quality of life. Many prevalence studies regard OD in relation to age or diagnosis. Knowledge on the prevalence of OD in different healthcare settings is lacking. This systematic review aimed to estimate the prevalence of OD in adults admitted to hospitals, rehabilitation facilities, nursing homes, and palliative care facilities through meta-analyses. A systematic literature search was completed including all dates up to March 30, 2021. The methodology and reporting were based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Forty-four out of 1,956 screened articles were deemed eligible. Considerable heterogeneity in definitions of OD and type and quality of selected outcome measures were observed. Overall within-group pooled prevalence estimates for OD determined by meta-analysis were 36.5% (95% CI 29.9 − 43.6) in the hospital setting, 42.5% (95% CI 35.8 − 49.5) in the rehabilitation setting, and 50.2% (95% CI 33.3–67.2) in nursing homes. No OD prevalence data were identified for palliative care facilities. Results for between-group analyses of OD prevalence estimates in the hospital setting were non-significant for type of assessment method, diagnostic group, and type of hospital ward, but indicated significantly higher prevalence estimates in nursing homes when using screening compared to patient-report. Future research should provide OD prevalence data for palliative care, achieve consensus in OD-related terminology when performing prevalence studies, and use screening and assessments with optimal diagnostic performance and psychometric properties.
1 September 2010 in Journal of Head Trauma Rehabilitation
Objective: To confirm the reliability and diagnostic validity of the JFK Coma Recovery Scale–Revised (CRS-R) across raters with varying levels of experience. Methods: Thirty-one patients with disorders of consciousness were recruited from 6 Norwegian hospitals. Main outcome measures: CRS-R and the Disability Rating Scale. Results: Reliability measures were good for the CRS-R total scores and moderate to good for its subscales. Diagnostic agreement among examiners was good. Raters' experience with the CRS-R favorably influenced reliability. Sensitivity and specificity analyses demonstrated better detection of patients in minimally conscious state on the CRS-R relative to the Disability Rating Scale. Conclusions: The CRS-R is a reliable tool for diagnosing vegetative state and minimally conscious state. Raters' level of experience influences the reliability of the CRS-R scores.
29 April 2016 in Journal of the International Neuropsychological Society
Objectives:The present study explored the level of self-and informant reported executive functioning in daily living using the Behavior Rating Inventory of Executive Function-Adult Version (BRIEF-A) in a large sample comprising healthy adults and patient cohorts with neurological and neuropsychiatric disorders. The relationship to neuropsychological test performance and self-reported emotional distress was explored, as well as the applicability of U.S. normative data.Methods:Scores on the self- and informant reported BRIEF-A are presented, along with scores on standardized cognitive tests, and on rating scales of self-reported emotional distress in a Norwegian healthy comparison group (n=115), patients with severe traumatic brain injury (n=125), focal frontal lobe damage (n=29), focal cerebellar lesion (n=24), Parkinson’s disease (n=42), attention deficit hyperactivity disorder (n=34), type II bipolar disorder (n=21), and borderline personality disorder (n=18).Results:Strong associations were observed between the BRIEF-A and emotional distress in both the healthy group and in neurological groups, while no or weak relationships with IQ and performance-based tests of executive function were seen. The relationship between BRIEF-A and emotional distress was weaker in the neuropsychiatric patient groups, despite high symptom load in both domains. Healthy participants tended to have BRIEF-A scores 1/2–3/4SDbelow the U.S. normative mean ofTscore=50.Conclusions:The study demonstrates the need to interpret BRIEF-A results within a broad differential diagnostic context, where measures of psychological distress are included in addition to neuropsychological tests. Uncertainty about the appropriateness of U.S. normative data in non-U.S. countries adds to the need for interpretive caution. (JINS, 2016,22, 682–694)
Objective: This study examined the effects of chronic focal lesions to the lateral prefrontal cortex (LPFC) or orbitofrontal cortex (OFC) on neuropsychological test performance and self-reported executive functioning in everyday living. Methods: Fourteen adults with OFC lesions were compared to 10 patients with LPFC injuries and 21 healthy controls. Neuropsychological tests with emphasis on measures of cognitive executive function were administered along with the Behavior Rating Inventory of Executive Functions (BRIEF-A) and a psychiatric screening instrument. Results: The LPFC group differed from healthy controls on neuropsychological tests of sustained mental effort, response inhibition, working memory and mental switching, while the BRIEF-A provided more clinically important information on deficits in everyday life in the OFC group compared to the LPFC group. Correlations between neuropsychological test results and BRIEF-A were weak, while the BRIEF-A correlated strongly with emotional distress. Conclusions: It was demonstrated that LPFC damage is particularly prone to cause cognitive executive deficit, while OFC injury is more strongly associated with self-reported dysexecutive symptoms in everyday living. The study illustrates the challenge of identifying executive deficit in individual patients and the lack of strong anatomical specificity of the currently employed methods. There is a need for an integrative methodological approach where standard testing batteries are supplemented with neuropsychiatric and frontal-specific rating scales.