Meeting the long-term needs of adults with acquired brain injury through community-based programming

Primary objective: To determine the effectiveness of a community-based programme for meeting the long-term needs of survivors of acquired brain injury (ABI).

Methods and procedures: Qualitative and quantitative methods were employed. Surveys were administered to practicing clinicians to validate the needs found in the literature that should be provided by such programmes. Surveys administered to participants in the programme assessed how effective they perceived it to be in meeting those needs. Focus group discussion provided support to the survey findings.

Main outcomes and results: Survey responses indicate differences among members, caregivers and student interns participating in the programme on issues of emotional support, social support, recreation and transportation. Focus group participants agree that emotional, social and cognitive needs are the most important needs of the members. Overall, these member needs were found to be met by the programme. The needs that participants found to remain unmet include social support for caregivers, transportation issues and community education.

Conclusions: This community-based, posts-rehabilitation programme for survivors of ABI appears to effectively meet many long-term needs. Investigations that examine the role of similar programming to meet caregiver needs, educate the public and provide transportation for participants are required.     

Traumatic brain injury state planning grant: preparing for change in a rural state

Purpose: The overarching purpose of this work was to generate a framework on which to build a traumatic brain injury (TBI) system-support action plan for individuals with a TBI living in a rural state.

Methods: Four research questions were posed aimed at describing rural service/support needs and service satisfaction among persons with a TBI, as well as rural service/support availability as defined by providers. One hundred and ninety-four providers/agencies and 250 individuals/family members completed one of two versions (provider/agency, individual/family member) of a Needs and Resources Assessment.

Results: Data analyses indicated that the majority of individual respondents lived at an impoverished income level and lived with a TBI for ∼12 years. Quality of life was perceived as significantly lower after the TBI than before. Employment decreased significantly following a TBI. Reasons for unemployment included a perceived inability to work, problems regarding proper accommodation and/or perceptions regarding being chosen as suitable job candidates.

Conclusions: Provider data confirmed that many important services are rarely available or specific to TBIs. Basic assistance with employment, cognitive training and occupational therapy were among those most needed. Paradoxically, a high proportion of individuals reported feeling satisfied with most services. Applications of these data along with recommendations for other rural states are described.     

Predictors of family system functioning after brain injury

Objectives: To identify predictors of family system functioning after acquired brain injury (ABI).

Research design: Retrospective design.

Methods and procedures: Data on ABI-related impairments, level of awareness, neuropsychological functioning, caregiver strain and family system functioning were extracted from the files of 66 individuals with ABI and 148 family members who had enrolled in a community-based support programme.

Main outcomes and results: Individuals with ABI, mothers, spouses, siblings and the family as a unit reported significant distress in family functioning compared to the norm. Higher caregiver strain and client gender (i.e. female) were predictive of poorer family system functioning. Neither ABI impairments nor neuropsychological variables were correlated with family functioning.

Conclusions: The effects of ABI extend beyond the injured person and primary caregiver. The need for a family systems approach to family intervention after ABI is supported. Implications for practice and future research are discussed.     

A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers

Primary Objective: To explore the transition experiences from hospital to home of a purposive sample of individuals with acquired brain injury (ABI).

Research Design: Phenomenological, qualitative design.

Methods and Procedures: Semi-structured interviews were conducted with 13 individuals with ABI (mean time since discharge = 15.2 months) and 11 family caregivers. Each interview was recorded, transcribed verbatim and then inductively analyzed.

Results: Through the inductive analysis process, a summary coding framework was developed that included that following eight main categories: the hospital experience; the transition process; the role of family caregivers; post-discharge services; friendship networks and community involvement; meaningful activities and time management; physical and psychological wellbeing; and barriers and facilitators.

Conclusions: The results of the study provide valuable insights into the lived experiences of participants and provide evidence to support the existence of a distinct transition phase within the ABI rehabilitation continuum; additional to and closely associated with the acute, post-acute and community integration phases.     

Predictors of caregiver burden following traumatic brain injury

Primary objective : To investigate the relationship of demographic characteristics of the caregiver (i.e. race, age, household income, education) to caregiver burden, family needs, family functioning and social support to assess the predictors of caregiver burden.

Research design : Information was obtained through mailed surveys and follow-up phone interviews.

Methods and procedures : Participants were 24 African American and 21 White caregivers of individuals with traumatic brain injury who were at least 1-year post-injury. Measures administered included the Head Injury Family Interview, Family Needs Questionnaire, Family Assessment Device and the NON, a measure of social support.

Main outcomes and results : Regression analyses revealed that importance of needs and percentage of needs met accounted for a significant amount of the variance in predicting affective/behavioural, cognitive and physical/dependency burden.

Conclusions : Rehabilitation professionals need to provide support that includes ongoing assessment of needs and provides a resource for steering caregivers to potential sources for meeting those needs.     

Self-concept and quality of life following acquired brain injury: a pilot investigation

Objective: To investigate through pilot exploration the relationships between depression, self-concept and perceived quality of life (QoL) in post-acute patients with acquired brain injury (ABI).

Methods: Nineteen patients with ABI were administered the Beck Depression Inventory-II and the Quality of Life Inventory, along with the Tennessee Self-Concept Scale-2 and the Head Injury Semantic Differential Scale, measures of self-concept. The relationships between these measures were explored using correlational analyses.

Results: Ratings of self-concept were correlated with perceived QoL, suggesting that poorer view of self was associated with lower subjective QoL. Additionally, depressive symptoms were associated with lower QoL ratings, consistent with previous research.

Conclusions: These results suggest that intra-personal variables, such as self-concept and depression, impact the perceived QoL of the ABI survivor. Future research exploring the mediating effects of these variables on QoL may clarify this relationship and may aid in developing more effective interventions for these individuals.     

Measuring grief in caregivers of persons with acquired brain injury

Primary objective: To investigate the psychometric and validity properties and applicability of a modified version of the Marwit-Meuser Caregiver Grief Inventory (MM-CGI) for use with caregivers of patients with acquired brain injury (ABI).

Research design: Replicate Marwit and Meuser's original psychometric study assessing grief in caregivers of dementia patients.

Methods and procedures: The MM-CGI was administered to 28 ABI caregivers along with standardized measures of caregiver strain, depression, well-being and family support.

Main outcomes and results: Results for ABI caregivers were similar to those for dementia caregivers with the instrument demonstrating excellent internal consistency reliability for total and sub-scale grief scores and strong divergent validity. Results also parallel those of a recent study of cancer caregivers.

Conclusions: The MM-CGI is as useful for diagnosing and treating grief in ABI caregivers as it is for those caring for persons with other serious illnesses.     

The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum

Primary objective: To investigate the experiences of individuals who had sustained a traumatic brain injury, their families and the physicians and health professionals involved, from the critical care episodes and subsequent rehabilitation.

Research design: Semi-structured interviews were conducted with individuals who had sustained a TBI (n = 8) and their families (n = 8) as well as with the health professionals (or service providers) (n = 22) and physicians (n = 9) who provided them care.

Main outcomes and results: Results revealed the difficulties encountered by the different people involved, from the standpoint of the readjustment of the individual with the TBI and their family, the relationships among the various actors and the continuity of care.

Conclusions: This study brings to light the importance of including the family and the person with a TBI in the care process by calling for their participation and by setting up suitable structures that prioritize a meaningful partnership among the key individuals.     

An evaluation of the paediatric acquired brain injury community outreach programme (PABICOP)

Primary objective: To examine the utility of a coordinated, family/community-focused programme (PABICOP) vs. a standard approach for improving outcomes for children with ABI and their families.

Research design: Pre-test-post-test design, with comparison group and follow-up.

Methods and procedures: Ninety-six children (64 children receiving PABICOP services and 32 children receiving standard care) participated in the study. Measures were completed at baseline and 3 and 12 months later.

Main outcomes and results: Parents/caregivers with more than 10 contacts with PABICOP scored significantly higher on an ABI knowledge quiz than either parents/caregivers with 10 contacts or less or the comparison group at post-test and follow-up. Parents/caregivers with 10 contacts or less with PABICOP reported significantly greater improvements in children's school and total competence on the CBCL than either parents/caregivers with more than 10 contacts or the comparison group at post-test and follow-up.

Conclusions: PABICOP may be more useful for enhancing knowledge of ABI for parents/caregivers and for integrating children into the community over a 1-year period than a standard approach. The amount of service received appears to influence outcomes.     

The factor structure of the Hospital Anxiety and Depression Scale in acquired brain injury

Primary objective: To evaluate the factor structure of the Hospital Anxiety and Depression Scale (HADS) as a mood assessment in a sample of individuals with acquired brain injury (ABI).

Research design: Cohort study.

Methods and procedures: HADS data from 140 people with ABI was subjected to principle components analysis (PCA).

Experimental interventions: None.

Main outcomes and results: A three-factor solution emerged. Items loading on the first two factors map on to the anxiety and depression scales. However, two items from the depression sub-scale did not load significantly on either of these two main factors. Possible reasons are discussed.

Conclusions: This study suggests that the HADS is a useful tool for examining depression and anxiety in a brain injured population, but interpretation of responses to some items should be cautious.     

Rehabilitation outcomes of cardiac and non-cardiac anoxic brain injury: a single institution experience

Objective: To compare the functional outcomes of patients with anoxic brain injury (ABI) due to cardiac and non-cardiac aetiologies.

Design: Retrospective chart review over 4 years.

Setting: Freestanding rehabilitation hospital.

Participants: Thirteen patients with cardiac ABI and 13 patients with non-cardiac ABI.

Intervention: Comprehensive, multi-disciplinary inpatient rehabilitation services.

Main outcome measures: Rehabilitation hospital length of stay (LOS) and cost; Functional Independence Measure (FIM) scores and its various sub-sets on admission and discharge; FIM efficiency and change; and discharge disposition.

Results: Patients with cardiac ABI were similar in gender and ethnicity when compared to patients with non-cardiac ABI but were older (average age 52 vs 42) with a higher percentage of cardiac patients married (77% vs 39%). No statistically significant differences were found between the two groups on all sub-sets of the FIM on admission and discharge as well as the different FIM efficiencies. However, there was a trend for the cardiac ABI patients to have a greater efficiency in improving mobility during rehabilitation when compared to non-cardiac ABI patients. The rehabilitation hospital LOS was ∼28 days less for patients with cardiac ABI (41.49 vs 69.84 days), but this difference was not statistically significant (p = 0.26). The mean rehabilitation cost for patients with cardiac ABI was ∼ $14 000 less than that for those with non-cardiac ABI ($44 181 vs $58 187). This difference was not statistically significant (p = 0.15). Cardiac ABI patients were more likely to be discharged directly to home from rehabilitation when compared to non-cardiac ABI patients (p = 0.06).

Conclusion: This pilot study demonstrates some differences in the recovery patterns of patients with ABI who had a cardiac aetiology and those who had non-cardiac aetiologies. While both groups experienced similar progress during rehabilitation, those with cardiac ABI made gains with a shorter LOS and less rehabilitation costs when compared to non-cardiac ABI patients. These data suggest a trend towards greater cost and length of stay for patients with ABI who had non-cardiac aetiologies.     

Functional outcomes following anoxic brain injury: a comparison with traumatic brain injury

Primary objective: To compare the functional outcomes of patients with anoxic brain injury (ABI) and patients with traumatic brain injury (TBI) following inpatient rehabilitation.

Research design: Retrospective chart review.

Methods and procedures: Data on 68 patients with brain injury (34 with ABI and 34 with TBI) were collected.

Main outcomes and results: The ABI and TBI groups were demographically similar, except that patients with ABI were more likely to be married. Both groups significantly improved their function and were similar upon discharge. For the ABI group, there were trends toward a shorter length of stay, increased total FIM efficiency and decreased cost of stay when compared with the TBI group. The patients with ABI tended to be discharged to a sub-acute rehabilitation facility more than those in the TBI group.

Conclusions: This study is important because it shows that patients with ABI benefit from inpatient rehabilitation and made significant functional gains comparable to the gains of patients with TBI.     

Comparison of the Sydney Psychosocial Reintegration Scale (SPRS) with the Community Integration Questionnaire (CIQ): psychometric properties

Primary objective: This study compared the psychometric properties of two community integration measures used with people with acquired brain injury (ABI) in the community.

Research design: Questionnaires were mailed-out to people with ABI and nominated proxies.

Methods and procedures: Responses were obtained from 96 people with ABI and 121 proxies on the Community Integration Questionnaire (CIQ) and the Sydney Psychosocial Reintegration Scale (SPRS).

Main outcomes and results: Matched client-proxy scores were not significantly different. The SPRS had greater internal consistency and more normal distributions than the CIQ. Correlations between the three pairs of theoretically parallel sub-scales were modest (0.41-0.60). Multi-dimensional scaling did not support the theoretical structure of the sub-scales, but found two dimensions underpinning the measurement of community integration.

Conclusions: Mail-out administration is associated with poor completion rates. The SPRS has sound psychometric properties when compared to the CIQ. Further research investigating the theoretical structure of community integration in ABI is recommended.     

Parental coping following childhood acquired brain injury

Primary objective: To examine parental coping following an acquired brain injury of their child, the relationship between maternal and paternal coping, and the extent to which social support and family environment affect parental coping.

Research design: A cross-sectional design was used.

Methods and procedures: Parents (n = 30) of children with acquired brain injury provided relevant demographic data and completed questionnaires investigating coping, social support and perceptions of family environment.

Main outcomes and results: Perception-focused coping strategies were used most often by parents. Mothers had a more extensive repertoire than fathers, and the relationship between maternal and paternal coping appeared to be complementary. Relationships were found between emotion-focused coping and instrumental support (r = 0.39) and perception-focused coping and family cohesion (r = 0.37).

Conclusions: Recognizing parental coping styles, enhancing the development of positive strategies, and underscoring the importance of social support and the family environment will assist parents to cope positively with their child's acquired brain injury.     

Life satisfaction and distress in family caregivers as related to specific behavioural changes after traumatic brain injury

Primary objective: To predict long-term outcome of those caring for family members who have sustained a traumatic brain injury (TBI).

Methods and procedures: A multivariate approach was used to examine the effectiveness of caregiver coping strategies in the context of TBI-related behavioural change. Self-administered questionnaire packages were collected from 72 adult survivor and family-member pairs who provided information on survivors' altered executive function, behavioural control and emotional sensitivity as well as caregivers' methods of coping, attitudes toward caregiving, indices of distress, mood ratings and quality of life.

Main outcomes and results: Family members generally reported higher levels of satisfaction than dissatisfaction with their caregiving role. The type of neurobehavioural deficit and the approaches taken to cope with stress had specific effects on each dimension of caregiver outcome.

Conclusions: Adequate family support requires finely tuned assessment of factors relevant to successful coping.     

Crisis and its assessment after brain injury

Primary objective : To develop a measure to assess crisis after acquired brain injury (ABI).

Research design : A triangulated research strategy, using both qualitative and quantitative methods, was employed to develop the crisis measure.

Methods and procedures : The measure was developed in two phases. In the first phase, by using focus group methodology, the experience of crisis following brain injury was described. The second phase involved developing the questionnaire items, pilot testing the measure and conducting initial reliability testing.

Main outcomes and results : The six themes derived from the content analysis led to the creation of the measure, with versions for individuals who have an ABI, family members and professionals. Test-re-test reliability results ( n = 40) were adequate.

Conclusions : The results suggest that crisis is experienced as precarious homeostasis with individuals with brain injury, varying in intensity over time, subjectively viewed as never really absent.     

Validation of the Memory and Behavior Problems Checklist-1990R for use in acquired brain injury

Objective: The Memory and Behavior Problems Checklist-1990R (MBPC-1990R) is a carer-rated measure of (a) problem behaviours and (b) corresponding carer reaction. Although originally developed and validated for dementia, its items are relevant to acquired brain injury (ABI). This study evaluated its validity in this population.

Design: Cross-sectional study.

Methods: In a national postal survey carried out to inform service planning, 222 family carers of adults with TBI (49%), strokes (26%), infections (18%), other (7%) completed the MBPC-1990R, Head Injury Behaviour Scale (HIBS), Barthel Index (BI), Northwick Park Dependency Score (NPDS), Carer Burden Interview (CBI), WHOQOL-BREF and GHQ-28.

Results: MBPC-1990R problems correlated well with HIBS problems (r = 0.70), as did MBPC-1990R carer reaction with HIBS distress (r = 0.78) and CBI (r = 0.73) scores, indicating good convergent validity. Discriminant validity was inferred from absent/weak correlations between MBPC-1990R problems and both BI (r = -0.02) and NPDS (r = 0.24); likewise between MBPC-1990R carer reaction and WHOQOL-BREF physical, psychological, social, environmental sub-scales (r = -0.32 to -0.41) and GHQ-28 scores (r = 0.35). Factor analysis revealed excessive, cognitive, aggressive and passive/low mood sub-scales, which showed good internal consistency and varied across ABI groups.

Conclusions: The MBPC-1990R is supported as a measure of problem behaviours and carer reaction in ABI. Further validation in ABI groups is recommended.     

Breaking the news of traumatic brain injury and incapacities

Primary objective: This paper presents research results regarding disclosure of traumatic brain injury (TBI) diagnosis and resulting deficits of a study aiming to investigate the experiences of individuals who had sustained a TBI, their families, the physicians and health professionals involved, from the critical care episodes and subsequent rehabilitation.

Research design: Semi-structured interviews were conducted with individuals who had sustained a TBI (n = 8) and their families (n = 8) as well as with the health professionals (or service providers) (n = 22) and physicians (n = 9) who provided them care.

Main outcomes and results: Results revealed that the quality of the disclosure is strongly influenced by the medical uncertainty surrounding the TBI and the difficulties of healthcare professionals in dealing with the family's emotions.

Conclusions: Delivering bad news is always difficult, but it is possible to make this harrowing experience easier and, in so doing, enhance patient and family resilience.     

Comparability of Mayo-Portland Adaptability Inventory ratings by staff, significant others and people with acquired brain injury

Objectives: To determine the internal consistency, reliability and comparability of the Mayo-Portland Adaptability Inventory (MPAI-4) and sub-scales completed by people with acquired brain injury (ABI), family and significant others (SO) and rehabilitation staff.

Subjects: 134 people with ABI consecutively seen for outpatient rehabilitation evaluation.

Method: MPAI-4 protocols based on independent ratings by the people with ABI undergoing evaluation, SO and rehabilitation staff were submitted to Rasch Facets analysis to determine the internal consistency of the overall measure and sub-scales (Ability, Adjustment and Participation indices) for each rater group and for a composite measure based on all rater groups. Rater agreement for individual items was also examined.

Results: Rasch indicators of internal consistency were entirely within acceptable limits for 3-rater composite full scale and sub-scale measures; these indicators were generally within acceptable limits for measures based on a single rater group. Item agreement was generally acceptable; disagreements suggested various sources of bias for specific rater groups.

Conclusions: The MPAI-4 possesses satisfactory internal consistency regardless of rating source. A composite measure based on ratings made independently by people with ABI, SO and staff may serve as a 'gold standard' for research purposes. In the clinical setting, assessment of varying perspectives and biases may not only best represent outcome as evaluated by all parties involved but be essential to developing effective rehabilitation plans.