scholarly journals Perceptions of Long-term Community-based Support Following Severe Acquired Brain Injury

2004 ◽  
Vol 5 (1) ◽  
pp. 53-66 ◽  
Author(s):  
Tamara Ownsworth ◽  
Merrill Turpin ◽  
Glenys Carlson ◽  
Julie-Anne Brennan
Keyword(s):  
Brain Injury ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Effective Area ◽  
Structured Interview ◽  
Support Needs ◽  
Individual Choice ◽  
Community Based ◽  
Severe Acquired Brain Injury

AbstractMany individuals require long-term community-based support following acquired brain injury (ABI). However, very few studies have examined individuals' perceptions of these support needs. The present exploratory study examined individuals' perceptions of community-based support following severe ABI. Participants included eight individuals (aged 20–48 years) with severe ABI, seven relatives and three case managers. The individuals were receiving long-term specialised lifestyle support ranging from 3–70 hours per week. A structured interview with open and closed questions was developed to explore perceptions of individuals' support needs across the areas of personal and home-based activities, community-based activities, self-organisation and vocational activities and social and psychological well-being. The questions investigated whether support was needed, the importance of support, the sources of support, the effectiveness of support and the need for change. A comparison of the three respondent groups' perceptions of support indicated a general consensus that community-based activities were the most important and most effective area of support. When the issues raised by the three respondent groups were compared and contrasted two main themes emerged from the data, which were labelled “relationships” and “individual choice versus support needs”. These themes are discussed in relation to the provision of long-term community-based support services following ABI.

scholarly journals Case management after acquired brain injury compared to care as usual: study protocol for a two-year pragmatic randomized controlled trial

2020 ◽  
Author(s):  
Annemarie Stiekema ◽  
Christine Resch ◽  
Mireille Donkervoort ◽  
Natska Jansen ◽  
Kitty HM Jurrius ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Brain Injury ◽  
Case Management ◽  
Self Efficacy ◽  
Unmet Needs ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Family Needs ◽  
Randomized Controlled

Abstract Background: People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual.Methods: This is a pragmatic randomized controlled study with repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to two years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every six months for 18-24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use.Discussion: At the moment there is no integrated health care service for people with acquired brain injury and their family members in the long-term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services.Trial registration: Netherlands Trial Register, NL8104. Registered 22 October 2019, https://www.trialregister.nl/trial/8104.

scholarly journals A Study of Emotionalism in Patients Undergoing Rehabilitation following Severe Acquired Brain Injury

2000 ◽  
Vol 12 (4) ◽  
pp. 201-207 ◽  
Author(s):  
Joanna McGrath
Keyword(s):  
Brain Injury ◽  
Clinical Management ◽  
Acquired Brain Injury ◽  
Female Gender ◽  
Structured Interview ◽  
Self Report ◽  
Independent Variables ◽  
Severe Acquired Brain Injury ◽  
The Right ◽  
Injured Patients

The present study describes the phenomenon of emotionalism in a sample of brain injured patients of mixed aetiology, with a view to identifying issues relevant to clinical management, and possible causal factors. 82 subjects with severe acquired brain injury undergoing rehabilitation participated in a structured interview in which they were asked to report the presence/absence of emotionalism and degree of distress associated with it. Their overt crying behaviour was also observed and recorded. Independent variables that predicted crying during the interview were identified using a multiple logistic regression procedure. Prevalence rates of emotionalism-tearfulness were high in this sample (52% self-report, 36–41% Emotionalism-laughter was much less common (13%) Emotionalism-tearfulness was usually accompanied by negative affect, occurred in response to identifiable precipitants, and was often controllable. It was associated with major personal distress in about half the subjects who reported it. Independent variables which predicted crying behaviour were female gender and focal damage to the right cerebral hemisphere. It is concluded that an increased readiness to cry is common in people with severe acquired brain injury of mixed aetiology. The behaviour is meaningful, though not always distressing. The intensity of the behaviour is variable, and it may be most appropriate to regard emotionalism as a dimension rather than a syndrome. Implications for clinical management are discussed.

scholarly journals Case management after acquired brain injury compared to care as usual: study protocol for a 2-year pragmatic randomized controlled superiority trial with two parallel groups

Trials ◽  
2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Annemarie P. M. Stiekema ◽  
Christine Resch ◽  
Mireille Donkervoort ◽  
Natska Jansen ◽  
Kitty H. M. Jurrius ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Brain Injury ◽  
Case Management ◽  
Unmet Needs ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Family Needs ◽  
Randomized Controlled ◽  
Superiority Trial

Abstract Background People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual. Methods This is a pragmatic randomized controlled superiority trial with two parallel groups and repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to 2 years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every 6 months for 18–24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use. Discussion At the moment, there is no integrated health care service for people with acquired brain injury and their family members in the long term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services. Trial registration Netherlands Trial Register NL8104. Registered on 22 October 2019.

scholarly journals Developing an instrument for an early prediction model of long-term functional outcomes in people with acquired injuries of the central nervous system: protocol and methodological aspects

2020 ◽  
Author(s):  
Stefano Masiero ◽  
Humberto Antonio Cerrel Bazo ◽  
Marcello Rattazzi ◽  
Laura Bernardi ◽  
Marina Munari ◽  
...  
Keyword(s):  
Brain Injury ◽  
Prediction Model ◽  
Prediction Models ◽  
Acquired Brain Injury ◽  
Acute Stage ◽  
Cognitive Outcomes ◽  
Cognitive Outcome ◽  
Teaching Hospitals ◽  
Severe Acquired Brain Injury

Abstract Severe acquired brain injury (ABI) is a major cause of long-term disability and is the main determinant of health and societal costs. Early identification of favourable long-term recovery would allow personalized rehabilitative programs and better health care resources allocation. In light of the higher survival rate from intensive care units (ICU) in recent years, there is a growing need for early prognostication markers of functional recovery; to date, these data have been mainly collected at rehabilitation unit admission and not during the acute phase. We present the protocol and methodology to develop prediction models in people with severe acquired brain injury (GCS at admission to ICU < 8) for the functional and cognitive outcome at 12 months from the event. Predictors will be collected during the acute stage. Participants will be recruited within the first 72 h from the event in the ICUs of two teaching hospitals (Padova and Treviso). Participants will be followed up at discharge from ICU, admission and discharge from Neurorehabilitation and after 12 months from the event. Clinical and functional scales, electroencephalography, evoked potentials, magnetic resonance imaging and serological markers will be entered into a digital registry. Survival will be estimated using the Cox proportional hazard model. A multivariate prediction model will be developed for each of the functional and cognitive outcomes at 12 months from the event.

Getting motivated: long-term perspectives on engaging in community-based programs after acquired brain injury

Brain Injury ◽  
2020 ◽  
Vol 34 (10) ◽  
pp. 1331-1338
Author(s):  
Andrea Kusec ◽  
Janelle Panday ◽  
Amanda Froese ◽  
Hailey Albright ◽  
Jocelyn E. Harris
Keyword(s):  
Brain Injury ◽  
Acquired Brain Injury ◽  
Community Based ◽  
Community Based Programs

Train 4 Good - an eight-month mindfulness program live on Internet for long-term mental fatigue and emotional distress after an acquired brain injury

2018 ◽  
Vol 2 (5) ◽  
Author(s):  
Birgitta Johansson ◽  
Helena Bjuhr
Keyword(s):  
Brain Injury ◽  
Emotional Distress ◽  
Short Form ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Mental Fatigue ◽  
Good Program ◽  
Face To Face ◽  
Self Compassion

Long-term psychosocial and emotional difficulties and mental fatigue after stroke and traumatic brain injury (TBI) is common and there is a need for rehabilitation and support. Mindfulness can contribute to well-being and can be delivered in groups and also on Internet. The aim of this feasibility study was to evaluate whether an eight-month mindfulness program, Train 4 Good, could be successfully delivered live on Internet (10 participants) for participants suffering from long-term mental fatigue after a TBI or stroke. A face-to face group was used for comparison (10 participants). The program Train 4 Good, includes cultivation of the four mental states of the Brahma Viharas; metta/loving-kindness, compassion, appreciative joy and equanimity. The Train 4 Good program was designed to enable people suffering from long-term mental fatigue and emotional distress after an acquired brain injury to further explore meditation, enhance well-being and to deepen their meditative practice after having completed a Mindfulness-Based Stress Reduction (MBSR) program. Significant improvement in self-compassion (Self Compassion Scale short form) was achieved after the Train 4 Good program. In conclusion, we suggest that it is possible to deliver the Train 4 Good program live on Internet for people suffering from mental fatigue and emotional distress after an acquired brain injury with a similar alleviation of self-compassion as for a face-to-face group. Mindfulness programs can be a valuable option for rehabilitation after an acquired brain injury when the fatigue and emotional burden can become long-lasting or lifelong. Development of longer mindfulness programs is warranted, since mental health problems only improve slowly and long-term support is requested.

Changes in Care and Support Needs Following Community-Based Intervention for Individuals With Acquired Brain Injury

2009 ◽  
Vol 10 (3) ◽  
pp. 295-306 ◽  
Author(s):  
Sue Sloan ◽  
Libby Callaway ◽  
Dianne Winkler ◽  
Kirsten McKinley ◽  
Carlo Ziino ◽  
...  
Keyword(s):  
Brain Injury ◽  
Community Integration ◽  
Acquired Brain Injury ◽  
Functional Independence ◽  
Support Needs ◽  
Intervention Period ◽  
Post Injury ◽  
Community Based ◽  
Care And Support ◽  
Life Roles

AbstractObjective:To examine the care and support and participation outcomes for individuals with severe Acquired Brain Injury (ABI) provided with three consecutive years of Community Approach to Participation (CAP) intervention.Method:A case series study design was undertaken with a total of 43 participants from two private occupational therapy practices specialising in community-based, CAP rehabilitation for people with severe ABI. Data were collected at four time points: January 2004 (Baseline), January 2005 (T1), January 2006 (T2), and January 2007 (T3) and included rating on the Care and Needs Scale (CANS); number of hours of paid and gratuitous weekly support; FIM™ and Community Integration Questionnaire scores; and number of current life roles (as recorded on Part 1 of the Role Checklist). Participants were an average of 6.73 years post injury and were living in a range of community environments and residential facilities.Results:There was considerable change in participants' CANS rating across the intervention period, with statistically significant decreases occurring from Baseline to T1 and T1 to T2. Ninety-five per cent of participants received some level of weekly paid support throughout the intervention period, with the amount varying considerably. Paid care decreased by an average of 10.78 hours per week from 85.85 hours per week at Baseline to 75.06 at T3. Although not statistically significant, this equated to an average cost saving of AU$324.84 per participant per week by the end of CAP intervention. There was an overall mean reduction of 4.96 hours of gratuitous care per week per participant over the intervention period, which was statistically significant. Increases in functional independence, community integration, and role participation were also found. On the FIM™, statistically significant improvement occurred between Baseline and T1 and on the CIQ between Baseline and T1 and T1 and T2. Significant increase on the Role Checklist occurred between Baseline and T1 and between T2 and T3. The number of life roles in which participants engaged increased by an average of 1.65 roles by the end of the intervention period. A reduction in care and support needs (measured by the CANS) was significantly associated with: (1) a reduction in total care hours, (2) and an increase in functional independence on the FIM™, and (3) an increase in community integration on the CIQ.Conclusion:With a long term approach and contextualised intervention targeted at skill development in the areas that underpin personally valued participation, increased role performance and community integration can be achieved by people with severe ABI, even many years post injury. This increased capacity has been found to be associated with a reduction in care and support needs, including paid and gratuitous care hours, over time.

scholarly journals Case management after acquired brain injury compared to care as usual: study protocol for a two-year pragmatic randomized controlled superiority trial with two parallel groups

2020 ◽  
Author(s):  
Annemarie Stiekema ◽  
Christine Resch ◽  
Mireille Donkervoort ◽  
Natska Jansen ◽  
Kitty HM Jurrius ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Brain Injury ◽  
Case Management ◽  
Unmet Needs ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Family Needs ◽  
Randomized Controlled ◽  
Superiority Trial

Abstract Background: People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual. Methods: This is a pragmatic randomized controlled superiority trial with two parallel groups and repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to two years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every six months for 18-24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use.Discussion: At the moment there is no integrated health care service for people with acquired brain injury and their family members in the long-term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services. Trial registration: Netherlands Trial Register, NL8104. Registered 22 October 2019, https://www.trialregister.nl/trial/8104.

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