Jennifer A. Bogner

What does participation mean? An insider perspective from people with disabilities

Purpose. Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation. Method. Sixty-three people self-identifying with diverse disabilities participated in qualitative focus groups across sites. Results. Participants conceptualized participation as a cluster of values that included active and meaningful engagement/being a part of, choice and control, access and opportunity/enfranchisement, personal and societal responsibilities, having an impact and supporting others, and social connection, inclusion and membership. Conclusions. No gold standard for ideal or optimal participation emerged; no one defined set or frequency of activities accounted for ‘full’ participation. Participants described needing to be free to define and pursue participation on their own terms rather than meeting predetermined societal norms. Participation was viewed as both a right and a responsibility, influenced by and ascribed to the person and to the society. Participation does not occur in a vacuum; the environment dynamically influences participation. Implications of this conceptual framing for assessment, research and systems level change to support participation of people with disabilities are discussed.

Moderating factors in return to work and job stability after traumatic brain injury

Objective:To examine job stability moderating variables and develop a postinjury work stability prediction model. Design:Multicenter analysis of individuals with traumatic brain injury (TBI) who returned for follow-up at 1, 2, and 3, or 4 years postinjury, were of working age (between 18 and 62 years of age at injury), and were working preinjury. Setting:Six National Institute on Disability and Rehabilitation Research TBI Model System centers for coordinated acute and rehabilitation care. Participants:A total of 186 adults with TBI were included in the study. Main outcome measures:Job stability was categorized as stably employed (employed at all 3 follow-up intervals); unstably employed (employed at one or two of all three follow-up intervals); and unemployed (unemployed at all three follow-up intervals). Results:After injury, 34% were stably employed, 27% were unstably employed, and 39% were unemployed at all three follow-up intervals. Minority group members, people who did not complete high school, and unmarried people were more likely to be unemployed. Driving independence was highly influential and significantly related to employment stability. A discriminant function analysis, which included age, length of unconsciousness and Disability Rating Scale scores at 1 year postinjury, accurately predicted job stability groupings. ConclusionData analysis provided evidence that employment stability is predictable with a combination of functional, demographic, and injury severity variables. Identification of people at risk for poor employment outcomes early on can facilitate rehabilitation planning and intervention.

Initial reliability and validity of the Ohio State University TBI Identification Method.

ObjectivesEvaluate the psychometric properties of indices of a lifetime history of traumatic brain injury (TBI). ParticipantsConvenience samples recruited from 2 treatment programs for persons with substance use disorders: N = 119 (study 1) and N = 103 (study 2) DesignTest interrater reliability (study 1) and predictive validity (Study 2). MeasuresSummary indices of the number, severity, timing, and effects of lifetime TBIs calculated from data elicited via a structured interview. ResultsInterrater reliability was high. Factor analysis showed indices could be characterized by severity weighted counts of the number of injuries, both lifetime and in childhood, number of symptoms persisting, worst injury, time since last TBI with loss of consciousness, and age at first TBI with loss of consciousness. Age at injury and symptoms persisting contributed independently to the prediction of common cognitive and behavioral consequences of TBI. ConclusionThese results provide preliminary support for the reliability and validity of summary indices of lifetime history of TBI elicited via a structured interview.

Systematic bias in outcome studies of persons with traumatic brain injury

OBJECTIVE (1) Examine systematic biases created by subjects lost at 1-year follow-up in samples of persons with traumatic brain injury; (2) identify potential threats to generalization of outcomes data. DESIGN A consecutive sample of admissions to acute rehabilitation studied 1 year following discharge. SETTING An inpatient brain injury rehabilitation unit in a large, academic medical center. SUBJECTS Eighty-eight patients with primary diagnosis of traumatic brain injury. MAIN OUTCOME MEASURES Subjects were considered lost to follow-up when phone calls, mail, clinic visits, and assistance from family failed to allow contact 1 year after discharge from acute rehabilitation. Potential effects of the biased follow-up sample were examined for seven suboptimal outcomes. RESULTS A total of 38.6% of subjects were lost to follow-up. Subjects intoxicated at time of injury and those with history of substance abuse were more-likely to be lost. Among subjects followed, the likelihood of working or being in school 1 year after discharge was significantly less for those intoxicated at time of injury and those with a history of substance abuse. CONCLUSIONS Systematic bias in longitudinal studies may result from subjects with substance use problems being lost to follow-up. Population estimates for return to work or school will be overestimated if those lost who have substance use problems resemble those followed.

Major and Minor Depression After Traumatic Brain Injury

OBJECTIVE To examine minor as well as major depression at 1 year posttraumatic brain injury (TBI), with particular attention to the contribution of depression severity to levels of societal participation. DESIGN Observational prospective study with a 2-wave longitudinal component. SETTING Inpatient rehabilitation centers, with 1-year follow up conducted primarily by telephone. PARTICIPANTS Persons with TBI (N=1570) enrolled in the TBI Model System database and followed up at 1-year postinjury. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES FIM, Patient Health Questionnaire-9, Participation Assessment with Recombined Tools-Objective, Glasgow Outcome Scale-Extended, and the Satisfaction With Life Scale. RESULTS Twenty-two percent of the sample reported minor depression, and 26% reported major depression at 1-year post-TBI. Both levels of depression were associated with sex (women), age (younger), preinjury mental health treatment and substance abuse, and cause of injury (intentional). There was a monotonic dose-response relationship between severity of depression and all 1-year outcomes studied, including level of cognitive and physical disability, global outcome, and satisfaction with life. With other predictors controlled, depression severity remained significantly associated with the level of societal participation at 1-year post-TBI. CONCLUSIONS Minor depression may be as common as major depression after TBI and should be taken seriously for its association to negative outcomes related to participation and quality of life. Findings suggest that, as in other populations, minor and major depression are not separate entities, but exist on a continuum. Further research should determine whether people with TBI traverse between the 2 diagnoses as in other patient groups.

Reliability and predictive validity of the Ohio State University TBI identification method with prisoners.

ObjectivesEvaluate the psychometric properties of indices of lifetime exposure to traumatic brain injury (TBI) among prisoners. ParticipantsConvenience samples recruited from male (N = 105) and female (N = 105) state prison facilities. DesignAssess test/retest reliability and criterion-related validity. Primary MeasuresSummary indices of the number, severity, timing, and effects of lifetime exposure to TBI calculated from data elicited via a structured interview. ResultsTest/retest reliability ranged from acceptable to high. Factor analysis showed that indices of lifetime exposure could be characterized by (1) age of onset (especially childhood onset), (2) combinations of number and likely severity of injuries, and (3) number of symptoms and functional effects. Age at injury, number of TBIs with loss of consciousness, and symptoms persisting contributed independently to the prediction of common cognitive and behavioral consequences of TBI. ConclusionThese results provide further support for the reliability and validity of summary indices of lifetime exposure to TBI when elicited via a structured interview.

Awareness of deficits: emotional implications for persons with brain injury and their significant others.

The relationship between emotional distress and differing perceptions of the extent of deficits was investigated with fifty individuals with brain injury and their significant others. Participants completed questionnaires assessing their perceptions of the individuals deficits in various areas (Patient Competency Rating Scale, PCRS). Difference scores were used as markers for awareness of deficits. Emotional distress of the individuals with brain injury and their significant others was assessed with the Beck Depression Inventory (BDI) and the Beck Anxiety Inventory (BAI). Forty per cent of persons with brain injury and 34% of significant others reported symptoms suggestive of mild or greater depression, while 54% of persons with brain injury and 39% of significant others reported symptoms suggestive of experiencing mild or greater anxiety. Significant relationships were not found between the emotional distress of significant others and difference scores. Moderate-to-weak relationships were found between difference scores and the emotional distress of individuals with brain injury. The relationship between chronicity and awareness of deficits was in the opposite direction than predicted. The adjustment of significant others appears to be a function of the extent to which they perceive a resolution of deficits, time since injury, and other factors. Implications for rehabilitation and future research are discussed.The relationship between emotional distress and differing perceptions of the extent of deficits was investigated with fifty individuals with brain injury and their significant others. Participants completed questionnaires assessing their perceptions of the individuals deficits in various areas (Patient Competency Rating Scale, PCRS). Difference scores were used as markers for awareness of deficits. Emotional distress of the individuals with brain injury and their significant others was assessed with the Beck Depression Inventory (BDI) and the Beck Anxiety Inventory (BAI). Forty per cent of persons with brain injury and 34% of significant others reported symptoms suggestive of mild or greater depression, while 54% of persons with brain injury and 39% of significant others reported symptoms suggestive of experiencing mild or greater anxiety. Significant relationships were not found between the emotional distress of significant others and difference scores. Moderate-to-weak relationships were found between difference scores and the emotional distress of individuals with brain injury. The relationship between chronicity and awareness of deficits was in the opposite direction than predicted. The adjustment of significant others appears to be a function of the extent to which they perceive a resolution of deficits, time since injury, and other factors. Implications for rehabilitation and future research are discussed.

Factor structure of the Agitated Behavior Scale

The Agitated Behavior Scale (ABS; Corrigan, 1989) is a 14-item scale developed to monitor agitation during the acute phase of recovery from acquired brain injury. While previous studies have supported the reliability, internal consistency, and concurrent validity of the ABS, the current study was designed to investigate its underlying factor structure, as well as to determine systematic effects of time-of-day on the occurrence of agitation. Subjects were 212 patients with traumatic or other recently acquired brain injury who exhibited agitation during their treatment on a specialized brain-injury unit of an acute rehabilitation hospital. Confirmatory factor analysis revealed that agitation is best represented by one general construct with three underlying factors: Aggression, Disinhibition, and Lability. Analysis of agitation by nursing shift in which ratings were made confirmed that overall level was lowest during the night shift; however, the relationship between time-of-day and underlying factors deviated from this pattern. Results are discussed in terms of the necessity for objective measurement, definition of the construct of agitation, and time-of-day issues in sampling agitated behavior.

Role of agitation in prediction of outcomes after traumatic brain injury.

Bogner JA, Corrigan JD, Fugate L, Mysiw WJ, Clinchot D: Role of Agitation in Prediction of Outcomes After Traumatic Brain Injury. Am J Phys Med Rehabil 2001;80:636–644. Objective: To determine the role of agitation in the prediction of traumatic brain injury rehabilitation outcomes. Design: A longitudinal study of 340 consecutive patients admitted to an acute traumatic brain injury rehabilitation unit was conducted. Outcomes under study included rehabilitation length of stay, discharge destination, functional independence at discharge (FIMTM instrument), productivity at 1-yr follow-up, and life satisfaction at 1-yr follow-up (Satisfaction with Life Scale). Results: Univariate analyses suggested that the presence of agitation in rehabilitation is predictive of a longer length of stay and decreased functional independence in the cognitive realm at discharge. In addition, individuals who exhibit agitation at any time during rehabilitation are less likely to be discharged to a private residence. However, multivariate analyses indicated that cognitive functioning at admission to rehabilitation (FIM cognitive) mediates the relationship between the presence of agitation and length of rehabilitation, as well as between agitation and FIM cognitive at discharge. Similar results were found when discharge residence was the dependent variable; however, agitation also contributed some unique variance to the prediction. Lower cognitive functioning at admission to rehabilitation was associated with the occurrence of agitation during rehabilitation, longer length of stay, lower cognitive functioning at discharge, and a decreased likelihood that an individual would be discharged to a private residence. Conclusions: The results of the multivariate analyses support the contention that agitation and cognition are intimately related, with the long-term effects of the former being at least partially driven by the latter. These findings support the importance of systematically monitoring both agitation and cognition when applying interventions to reduce agitation.

Development of the participation assessment with recombined tools- Objective for use after traumatic brain injury

OBJECTIVE To develop a new measure, the Participation Assessment With Recombined Tools-Objective (PART-O), based on items from 3 participation instruments. DESIGN Instrument development based on survey research. SETTING Community. PARTICIPANTS Adults (N=400) with traumatic brain injury (TBI) 1 to 15 years postinjury, recruited from 8 TBI Model Systems (TBIMS). INTERVENTIONS None. MAIN OUTCOME MEASURE Community Integration Questionnaire version 2; Participation Objective, Participation Subjective; Craig Handicap Assessment and Reporting Technique; PART-O. RESULTS Using Rasch rating scale analysis to evaluate the psychometric properties of participation items drawn from 3 instruments, a set of 24 items was developed that covered a broad range of participation content and formed a measure with person separation of 2.47, person reliability of .86, item spread of 4.25 logits, item separation of 11.36, and item reliability of .99. Items were well targeted on the sample with only 1 item misfitting. The PART-O showed expected relationships with measures of impairment, activity limitations, and subjective well-being. CONCLUSIONS The 24-item PART-O is an acceptable measure of objective participation for persons with moderate and severe TBI. It has been adopted as the measure of participation in the TBIMS.