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 ◽  
...  

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.

2007 ◽  
Vol 8 (3) ◽  
pp. 251-261 ◽  
Author(s):  
Sue Sloan ◽  
Dianne Winkler ◽  
Katie Anson

AbstractObjectives: To investigate care needs, functional outcome, role participation and community integration approximately nine years following severe brain injury. To gain an understanding of the ongoing cost of care and support needs for this group. Participants: 13 individuals who had sustained an extremely severe traumatic brain injury (TBI), between 8 and 9 years previously participated in the study. These individuals were the remaining participants of a larger sample of consecutive admissions between 1996 and 1998 at Ivanhoe Manor Rehabilitation Hospital. Measures: Structured Interview, Functional Independence Measure, Community Integration Questionnaire, Care and Needs Scale and Role Checklist. Results: The majority of the participants were reported to have high support needs, with 6 participants (46%) requiring 24-hour support. Four participants were reported to able to be left alone for between a few hours per day to almost all week. Three participants reported that they were completely independent. The participant's characteristics are described in terms of functional independence, community integration and role participation. Overall care needs appear to have remained relatively stable between 2 and 9 years postinjury. However, there was a shift in the proportion of paid and gratuitous care over time, with a decrease in paid care and increased gratuitous care noted from the 2-year to long-term follow-up time points. Conclusions: Severe TBI has a long term influence on life roles, care needs and functional independence. The current study suggests that high care needs do not necessarily preclude participants from leading active lives and participating in valued life roles. The importance of social support in facilitating participation in activity and the potential issues for caregiver burden, given the increase in gratuitous care over time, should be acknowledged and further research in this area is recommended.


2009 ◽  
Vol 10 (3) ◽  
pp. 282-294 ◽  
Author(s):  
Sue Sloan ◽  
Libby Callaway ◽  
Dianne Winkler ◽  
Kirsten McKinley ◽  
Carlo Ziino ◽  
...  

AbstractObjective: To investigate the participation outcomes of individuals with severe acquired brain injury (ABI) who were provided with up to 12 months of intervention based on the Community Approach to Participation (CAP). Method: A case series study design was undertaken with a total of 85 participants from two private practices specialising in community-based, CAP rehabilitation for people with severe ABI. Inclusion criteria were the person had sustained an acquired brain injury, was aged over 18 years and had received up to 12 consecutive months of CAP input from one of the two practices within a three-year period between January 2004 and January 2007. Twenty-six of the 85 participants were an average of 343 days post injury (Early group) and 59 of the participants were an average of 10.2 years post injury (Late group). They were living in a range of community environments and residential facilities. Initial participants were identified for the study in January 2005. Data were gathered using the Functional Independence Measure (FIM™), Community Integration Questionnaire (CIQ), and Role Checklist (RC Part 1) at two time points: prior to intervention (baseline), and after a 12-month period or at discharge (TI). Within the intervention period, all participants received a customised community occupational therapy (OT) rehabilitation program based on the key principles of the CAP. Intervention focused on participation goals of the individual, and development of the associated skills that underpinned valued role performance. Results: Participants each received an average of 51.01 hours of CAP OT during the 12-month period of intervention. Considerable improvement was seen in functional independence, community integration, and role participation after intervention in both the Early and Late groups. A statistically significant increase in FIM™ and CIQ total scores was found for all participants from Baseline to T1. The number of roles in which participants engaged increased on average by almost one role per participant following intervention, from a mean of 3.06 to 3.99. Increased participation in volunteer, home maintainer, participant in organisations and hobbyist roles were most common. Conclusion: Increased functional independence, community integration, and participation in both the Early and Late groups over a 12 month period demonstrates the potential for improved participation outcomes for people with complex needs following ABI, even many years post injury.


2010 ◽  
Vol 11 (3) ◽  
pp. 299-312 ◽  
Author(s):  
Dianne Winkler ◽  
Sue Sloan ◽  
Libby Callaway

AbstractObjectives:The aim of this article is to describe the characteristics, needs and preferences of people under 50 with an acquired brain injury (ABI) living in residential aged care in Victoria and examine implications for service development.Participants:Sixty-one people under 50 with an ABI living in residential aged care in the state of Victoria.Measures:Care and Needs Scale, Community Integration Questionnaire, Overt Behaviour Scale, Health of the Nation Outcome Scale — ABI Version, Role Checklist, Resident Choice Scale.Results:The younger people with ABI in this study were a diverse group with a complex range of health and support needs that were not being adequately met within residential aged care. Many people (44%) required the highest level of support, indicating they could not be left alone while 26% could be left for part of the day and overnight. Most people (81%) and their support networks indicated they would like to explore moving out from residential aged care into community accommodation settings.Conclusions:This article provides clear direction for the development of services to meet the care needs of this group, to enable them to participate in the life of the community and to pursue a lifestyle of choice.


2004 ◽  
Vol 5 (1) ◽  
pp. 53-66 ◽  
Author(s):  
Tamara Ownsworth ◽  
Merrill Turpin ◽  
Glenys Carlson ◽  
Julie-Anne Brennan

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.


2012 ◽  
Vol 13 (1) ◽  
pp. 24-43 ◽  
Author(s):  
Sue Sloan ◽  
Libby Callaway ◽  
Dianne Winkler ◽  
Kirsten McKinley ◽  
Carlo Ziino

Objectives: To explore living situation, support and participation outcomes of people with severe acquired brain injury (ABI) residing in either home-like or disability-specific accommodation settings, who were provided with 3 years of occupational therapy intervention based on the Community Approach to Participation (CAP).To examine transitions for a subgroup whose accommodation and support model changed during this 3-year period and identify factors critical to this change.Method: Forty-three participants who had sustained severe to extremely severe ABI, and were an average of 6.73 years post-injury, were provided with CAP intervention over a 3-year period. Living situation and support model, participation levels and accommodation transition data were collected at four time points.Results: Participants were living in a range of home-like and disability-specific accommodation settings at baseline. The disability-specific accommodation group had mainly noncompensable injuries and required a significantly higher level of daily support at all four time points. They also received higher total hours of support, which averaged 170.83 hours per week at baseline and did not change significantly over the 3 years. In contrast, 86% of the participants residing in home-like settings had compensable injuries and received an average of 91.46 hours of support per week at baseline. This reduced to 70.97 hours per week over the 3-year intervention period, a change that was statistically significant.Conclusion: It is possible to achieve accommodation transitions to more independent, home-like situations many years post-injury and regardless of injury severity. Home-like settings provide scope to adjust support along a continuum to reflect gains in independence, community integration and role participation that the fixed models and hours of support in disability-specific accommodation do not. Over time, these gains can flow into a significant reduction in hours of support.


2017 ◽  
Vol 18 (2) ◽  
pp. 240-257 ◽  
Author(s):  
Anna Potter ◽  
Danielle Sansonetti ◽  
Kate D'Cruz ◽  
Natasha Lannin

Transitional living service (TLS) programmes for adults with an acquired brain injury are considered an important part of rehabilitation. However, considerable variability exists in the design and structure of these services, with limited research to guide the development of a programme based on best evidence. A scoping literature review was completed to answer the question ‘What is known about TLS programmes for adults with an acquired brain injury?’ Four electronic databases were systematically searched, followed by a grey literature search (from 1996 to 2015). 3183 articles were screened and 13 articles were included in the final review. Themes that emerged from the literature include the types of residents using TLS programmes, the subjective experience of residents and staff, intervention approaches, programme staffing, and programme outcomes. The research reviewed supports the use of TLS programmes to maximise functional independence and community integration of individuals with an acquired brain injury. Clinical practise recommendations were developed to help support implementation of TLS programmes based on best evidence, these included: to use multiple outcome measures, implement collaborative goal setting, support generalisation of skills learnt in the TLS to the home environment and for eligibility criteria for these programmes to include individuals across all phases of recovery.


2021 ◽  
pp. 1-21
Author(s):  
Kerrin Watter ◽  
Areti Kennedy ◽  
Vanette McLennan ◽  
Jessica Vogler ◽  
Sarah Jeffery ◽  
...  

Abstract Introduction: Following acquired brain injury, the goal of return to work is common. While return to work is supported through different rehabilitation models and services, access to vocational rehabilitation varies within and between countries, and global rates of employment post-injury remain low. The literature identifies outcomes from vocational programs and experiences with return to work, yet little is known about individuals’ perceptions and experiences regarding rehabilitation to support their vocational goals and experiences in attempting to return to work. Method: This qualitative study investigated the experiences of community-living adults with acquired brain injury (n = 8; mean age 45 years; mean time post-injury of 5.5 years) regarding their vocational rehabilitation and return to work. Focus groups and semi-structured interviews were conducted, with data analyzed via thematic analysis. Results: Participants identified negative and positive experiences with vocational rehabilitation and return to work. Five overarching themes were identified: addressing vocational rehabilitation in rehabilitation; facilitators of recovery and return to work; the importance and experience of working again; acquired brain injury and identity; and services, systems and policies. Participants also identified five key areas for early vocational rehabilitation services: education; service provision; employer liaison; workplace supports; and peer mentors. Study findings inform current and future practice and service delivery, at a clinical, service and system level.


2018 ◽  
Vol 21 (7) ◽  
pp. 465-474 ◽  
Author(s):  
Suzanne A.M. Lambregts ◽  
Frederike Van Markus-Doornbosch ◽  
Coriene E. Catsman-Berrevoets ◽  
Monique A.M. Berger ◽  
Arend J. De Kloet ◽  
...  

2004 ◽  
Vol 5 (1) ◽  
pp. 30-41 ◽  
Author(s):  
Pim Kuipers ◽  
Glenys Carlson ◽  
Sandra Bailey ◽  
Anshu Sharma

AbstractCommunity-based rehabilitation for people with acquired brain injury (ABI) is largely driven by goals set in the course of rehabilitation by clients and service providers. A preliminary study investigating the perspectives and practice of experienced rehabilitation coordinators was undertaken to explore issues that influence goal-setting in community rehabilitation settings. Detailed interviews and subsequent rounds of clarification were conducted with six experienced rehabilitation coordinators. Key themes identified through inductive analysis include cognitive influences, other client influences, service provider influences and the client-service provider relationship in the goal-setting process. Based on the findings, a preliminary descriptive schema of goal-setting in a community-based rehabilitation service for people with acquired brain injury is suggested. Factors such as training, experience, and values of the rehabilitation coordinators are also discussed in terms of their influence on goal-setting. Some strategies to assist a person with ABI to identify and work towards achieving realistic goals are identified. Suggestions for enhancing community-based rehabilitation practices with people with ABI, and scope for future research are noted. This paper constitutes a general overview of goal-setting in community-based ABI rehabilitation.


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