Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members.

BACKGROUND: The ability to self-advocate or have a say in one's care is integral to personalised care after acquired brain injury (ABI). This study aimed to understand what constitutes self-advocacy and associated barriers and facilitators throughout hospital transitions and into the community. METHOD: Qualitative methodology was employed with semistructured interviews conducted with 12 people with ABI and 13 family members. Interviews were conducted at predischarge (in-person or via telephone) and 4 months postdischarge (via telephone) from the brain injury rehabilitation unit of a tertiary hospital. Data were thematically analysed using a hybrid deductive-inductive approach. RESULTS: Self-advocacy reflects the process of reclaiming agency or people's efforts to exert influence over care decisions after ABI. Agency varies along a continuum, often beginning with impaired processing of the self or environment (loss of agency) before individuals start to understand and question their care (emerging agency) and ultimately plan and direct their ongoing and future care (striving for agency). This process may vary across individuals and contexts. Barriers to self-advocacy for individuals with ABI include neurocognitive deficits that limit capacity and desire for control over decisions, unfamiliar and highly structured environments and lack of family support. Facilitators include neurocognitive recovery, growing desire to self-advocate and scaffolded support from family and clinicians. CONCLUSION: Self-advocacy after ABI entails a process of reclaiming agency whereby individuals seek to understand, question and direct their ongoing care. This is facilitated by neurocognitive recovery, growing capacity and desire and scaffolded supports. Research evaluating approaches for embedding self-advocacy skills early in brain injury rehabilitation is recommended. PATIENT OR PUBLIC CONTRIBUTION: Two caregivers with lived experience of supporting a family member with ABI were involved in the design and conduct of this study and contributed to and provided feedback on the manuscript.

Evaluating the effectiveness of on-road driving remediation following acquired brain injury: A wait-list feasibility study with follow-up.

INTRODUCTION: Return to driving is an important goal for people recovering from acquired brain injury. Occupational therapy driving assessments aim to determine the impact of acquired brain injury on a person's capacity to drive and may include on-road driving rehabilitation. The primary objective of this project was to conduct a feasibility randomised controlled trial (RCT) of an on-road driving remediation program for adults with acquired brain injury. Secondary objectives were to measure the effectiveness of the on-road driving program and determine sample size required for a randomised controlled trial. METHODS: A wait-list randomised controlled trial with blinded assessment and 6-month follow-up aimed to recruit 10 participants with acquired brain injury. Concealed methods randomly allocated participants to receive the on-road driving rehabilitation program immediately (intervention group) or after 6 weeks (wait-list group). The primary outcome measure of functional fitness to drive, was assessed pre- and post-intervention, and at 6-month follow-up. Driving performance was measured by percentage of correct manoeuvres and driving instructor intervention. RESULTS: Eight participants (seven male; average age 46 years; six traumatic brain injury and two stroke) were recruited. The protocol was feasible. Results of the RCT suggest intervention effectiveness initially with two of the three interventions, and no wait-list, participants achieving fitness to drive. This increased to five out of eight participants after the wait-list group completed the intervention. While three participants retained this outcome at 6-month follow-up, universal deterioration in on-road driving performance was evident for all participants at 6-month follow-up. CONCLUSION: The trial was feasible and findings suggest that on-road driving remediation assists people with acquired brain injury to achieve functional fitness to drive but the skills may not be maintained 6 months later. A full RCT is warranted to further determine the effectiveness of on-road driving remediation and capacity of participants to maintain the skills developed.

Family members' experiences of driving disruption after acquired brain injury.

PRIMARY OBJECTIVE: 1) To explore family members' lived experiences of driving disruption at early and later stages of the recovery continuum following acquired brain injury (ABI). 2) To describe health-related quality of life of family members of individuals with ABI who are experiencing driving disruption. RESEARCH DESIGN: Mixed methods phenomenological research approach. METHODS AND PROCEDURES: Semi-structured interviews and health-related quality of life questionnaires were conducted with 15 family members of individuals with ABI (early group: 1-12 months post-injury, n = 6; later group: >1 year post-injury, n = 9). RESULTS: Two main themes were identified: Different for everyone: how driving disruption affects families, and Making it harder: context of driving disruption. The challenges of driving disruption were reported more frequently and with a more intense focus by family members who were caring for their relative for more than 1 year post-injury. This group also reported higher caregiver strain and poorer health-related quality of life. Reduced satisfaction with life, poor mental health and affected family functioning were reported by both groups. CONCLUSIONS: Driving disruption impacts on family members and has long-lasting consequences. It is important for clinicians to work with family members to manage these challenges even years after ABI and consider individual contextual factors.

Participant evaluation of an inpatient occupational therapy groups programme in brain injury rehabilitation.

BACKGROUND/AIM: Therapy groups are commonly used in brain injury rehabilitation yet patient perceptions of participation in groups are largely uninvestigated. This paper describes the occupational therapy groups programme at an inpatient brain injury rehabilitation unit and presents an evaluation from the patient's perspective. METHODS: Participants were in patients with traumatic brain injury who participated in the groups programme and completed a customised self-report questionnaire measuring perceptions about and satisfaction with four occupational therapy groups. Data were analysed descriptively and comparisons made between groups with a functional focus (meal preparation and community access) and an impairment focus (cognitive and upper limb) using Z scores. RESULTS: Thirty-five participants (30 males, five females) completed a total of 83 questionnaires. Over 90% of responses agreed or strongly agreed that working with others was enjoyable, that the groups provided feedback and individualised treatment, and were useful for them. There were no significant differences in perceptions about the functional and impairment-focussed groups. An illustrative case example of participation in the groups programme is presented. CONCLUSIONS: Overall, consumer feedback on different aspects of the occupational therapy groups programme in brain injury rehabilitation was positive. Further in-depth investigation of patient perceptions of groups including processes that facilitate or challenge participation is warranted.

The perspectives of participants with traumatic brain injury on prospective memory rehabilitation incorporating compensatory and metacognitive skills training.

OBJECTIVE: Patient feedback is rarely gathered systematically in cognitive rehabilitation research. This study examined the perceptions and experiences of people with traumatic brain injury (TBI) who participated in a trial of a 6-session educational program for the rehabilitation of prospective memory (PM) impairment. METHODS: A mixed methods design was used with 47 participants with TBI who completed a compensatory strategy training program (COMP) or COMP plus metacognitive strategy training program (COMP-MST) delivered by an occupational therapist. Data were collected via a participant survey, extracts from progress notes, and audiotaped discussions about learnings from the program during the final session. RESULTS: Participants from both programs were highly satisfied and perceived improvements in everyday PM performance post-intervention. Elements that were highly valued include setting individualised client-centred goals, repetitive training of strategy use, establishing habits and routines, and receiving experiential, verbal, and written feedback.Changes including more therapy sessions were recommended. CONCLUSIONS: Both the COMP and COMP-MST programs were perceived as effective by participants with TBI in improving their PM performance in everyday life using compensatory strategies such as assistive technology. PRACTICE IMPLICATIONS: Routine collection of patient feedback on cognitive rehabilitation can provide valuable information to support person-centred implementation of clinical practice guidelines.

Electronic Assistive Technology to Support Memory Function After Traumatic Brain Injury: A Systematic Review of Efficacy and User Perspectives.

Abstract Rapid technology advances have led to diverse assistive technology (AT) options for use in memory rehabilitation after traumatic brain injury (TBI). This systematic review aimed to evaluate the efficacy of electronic AT for supporting phases of memory in daily life after TBI. A secondary aim was to examine user perspectives on the utility of AT and factors influencing uptake or use. A systematic search of PsycINFO, MEDLINE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Excerpta Medica database (Embase), Scopus, and Cochrane Library was conducted from database inception to June 13, 2022, to identify eligible studies. Methodological quality was assessed by two independent reviewers. Nineteen eligible articles involving a total of 311 participants included four randomized controlled trials (RCTs; Class I), five single-case experimental designs (Class II), and 10 pre-post group (n > 10) or single-case studies without experimental control (Class III). Three Class I studies, two Class II studies and eight Class III studies supported the efficacy of AT for supporting memory functioning. Treatment fidelity was not examined in any study. There was the most empirical support for the efficacy of AT for facilitating retrieval and execution phases of memory (i.e., supported by 6/9 studies) with external support to encode memory intentions or pre-programmed reminders. Further controlled studies are needed to determine whether outcomes vary according to individuals' level of independence with use (e.g., self-initiated vs. pre-programmed reminders) and to examine user characteristics and design features influencing uptake and effectiveness. Greater involvement of end-users with brain injury in the design and evaluation of AT features is also recommended to enhance usability and uptake in daily life.

Efficacy of Prospective Memory Rehabilitation Plus Metacognitive Skills Training for Adults With Traumatic Brain Injury: A Randomized Controlled Trial.

BACKGROUND: Prospective memory (PM) failure can limit independence and productivity following traumatic brain injury (TBI). Compensatory strategy use may ameliorate the effect of PM impairment on daily life but requires sufficient self-awareness. Metacognitive skills training (MST) can facilitate self-awareness and strategy use and may improve the efficacy of PM rehabilitation. OBJECTIVE: To evaluate the effectiveness of compensatory strategy training (COMP) with an MST component (COMP-MST) for reducing everyday PM failure and improving psychosocial integration in adults with moderate-severe TBI, compared to COMP alone and a control condition. Secondary aims were to evaluate the effect of training on psychometric PM test scores, strategy use, self-awareness, and level of care. METHODS: Assessor and participant-blinded randomized controlled trial with 52 participants (77% male, mean age = 39.0. SD = 13.6) allocated to 3 groups: COMP-MST, COMP, and waitlist control. Interventions were delivered over 6 weekly sessions. Measures were collected pre- and post-intervention and 3-month follow-up. Data were analyzed using unstructured linear mixed-effects modeling for repeated measures and planned contrasts between time-points for each group. RESULTS: The models showed no significant differences between the groups on primary or secondary outcome measures. Significant pre-post intervention improvements were found for significant other's ratings of everyday PM failure for both intervention groups but not the control group, with medium to large effect sizes. Clinically relevant improvements on primary outcomes were found for participants across all 3 groups. CONCLUSIONS: This study found no significant benefits of combining MST with COMP for improving everyday PM and psychosocial integration. CLINICAL TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry https://www.anzctr.org.au/ ACTRN12615000996561.

Participation in leisure activities during brain injury rehabilitation.

PRIMARY OBJECTIVE: To describe and compare pre- and post-injury leisure activities of individuals receiving brain injury rehabilitation and explore levels of leisure participation and satisfaction. RESEARCH DESIGN: Cross-sectional descriptive study incorporating a survey of current and past leisure activities. METHODS AND PROCEDURES: Questionnaires were completed by 40 individuals with an acquired brain injury receiving inpatient or outpatient rehabilitation. MEASURES: Shortened Version of the Nottingham Leisure Questionnaire and Changes in Leisure Questionnaire (developed for this study). RESULTS: Leisure participation declined following injury, particularly in social leisure activities. Pre-injury activities with high rates of discontinued or decreased participation were driving, going to pubs and parties, do-it-yourself activities and attending sports events. Inpatient participants generally attributed decreased participation to the hospital environment, whereas outpatient participants reported this predominantly as a result of disability. Post-injury levels of perceived leisure satisfaction were significantly lower for the inpatient group compared to pre-injury, but not for the outpatient group. Uptake of some new leisure activities was reported post-injury, however not at the rate to which participation declined. CONCLUSIONS: Leisure participation decreases during brain injury rehabilitation compared to pre-injury levels. Re-engagement in relevant, age-appropriate leisure activities needs to be addressed during rehabilitation to improve participation in this domain.

The Lived Experience and Patient-reported Benefits of Yoga Participation in an Inpatient Brain Injury Rehabilitation Setting.

CONTEXT: The multifactorial benefits of yoga have been well documented in the literature, with the integration of yoga therapy into healthcare being an emerging field. In general, yoga therapy programs are utilized in the community as an adjunct to other therapy. At present, limited rehabilitation units routinely incorporate integrative therapy options within a hospital environment. AIMS: The aim of this study is to explore the lived experience and patient-reported benefits of yoga in an inpatient brain injury rehabilitation setting. SETTINGS AND DESIGN: Thirty-one participants were recruited to the study after voluntarily participating in a yoga class within an inpatient brain injury rehabilitation unit of a major metropolitan hospital. Yoga sessions were held weekly for 60 min and consisted of a modified Hatha yoga style. This was a mixed-methods, quasi-experimental one-group pretest-posttest study. METHODOLOGY: Quantitative data were collected to measure perceptions of relaxation and well-being before and after yoga classes, along with the satisfaction of the class. Semi-structured interviews were utilized to collect qualitative data of experiences and perceptions associated with yoga participation. STATISTICAL ANALYSIS USED: Thematic analysis was completed for qualitative data. Quantitative data were analyzed using nonparametric statistical methods, and descriptive statistics were also provided. RESULTS: The benefits described by participants are reported in this paper. These include improved relaxation, physical well-being, emotional well-being, being present, and self-awareness. CONCLUSIONS: This study describes the personal benefits experienced from regular yoga participation within an inpatient rehabilitation setting.

Self-identified goals and the ability to set realistic goals following acquired brain injury: a classification framework.

OBJECTIVE: To develop a framework for classifying the nature of goals identified by people with acquired brain injury (ABI) and explore the extent to which goals and the ability to set realistic goals vary over time and according to stage of recovery. METHODS: Participants included 60 people with ABI comprising two subgroups: a post-acute subgroup (n = 28, mean time since injury = 1.1 years, SD = 0.5) and a long-term subgroup (n = 32, mean time since injury = 4.9 years, SD = 3.0). Participants completed the Self-Awareness of Deficits Interview, which includes a goal-setting component, at an initial assessment and at 12-month follow-up assessment. Data generated from the interviewing process were analysed using a combination of qualitative and quantitative methods. RESULTS: Through an inductive analysis, a classification framework was developed consisting of the following goal categories: 'relationships', 'work and education', 'injury/rehabilitation', 'health and leisure', 'daily life management' and 'general life/personal goals'. Each of these categories comprised several subcategories of goals. Overall, the post-acute subgroup identified more goals in the improve function/rehabilitation subcategory than the long-term subgroup (P = 0.002), whereas the nature of other life goals remained consistent over time. The ability to set realistic goals improved over time for the entire sample (P = 0.013). CONCLUSION: The findings provide therapists with greater insight into the goals most commonly identified by individuals with ABI. The classification framework may assist therapists to elicit client goals and tailor rehabilitation accordingly.

The efficacy of prospective memory rehabilitation plus metacognitive skills training for adults with traumatic brain injury: study protocol for a randomized controlled trial.

BACKGROUND: Impairment of prospective memory (PM) is common following traumatic brain injury (TBI) and negatively impacts on independent living. Compensatory approaches to PM rehabilitation have been found to minimize the impact of PM impairment in adults with TBI; however, poor self-awareness after TBI poses a major barrier to the generalization of compensatory strategies in daily life. Metacognitive skills training (MST) is a cognitive rehabilitation approach that aims to facilitate the development of self-awareness in adults with TBI. This paper describes the protocol of a study that aims to evaluate the efficacy of a MST approach to compensatory PM rehabilitation for improving everyday PM performance and psychosocial outcomes after TBI. METHODS/DESIGN: This randomized controlled trial has three treatment groups: compensatory training plus metacognitive skills training (COMP-MST), compensatory training only (COMP), and waitlist control. Participants in the COMP-MST and COMP groups will complete a 6-week intervention consisting of six 2-h weekly training sessions. Each 1.5-h session will involve compensatory strategy training and 0.5 h will incorporate either MST (COMP-MST group) or filler activity as an active control (COMP group). Participants in the waitlist group receive care as usual for 6 weeks, followed by the COMP-MST intervention. Based on the sample size estimate, 90 participants with moderate to severe TBI will be randomized into the three groups using a stratified sampling approach. The primary outcomes include measures of PM performance in everyday life and level of psychosocial reintegration. Secondary outcomes include measures of PM function on psychometric testing, strategy use, self-awareness, and level of support needs following TBI. Blinded assessments will be conducted pre and post intervention, and at 3-month and 6-month follow-ups. DISCUSSION: This study seeks to determine the efficacy of COMP-MST for improving and maintaining everyday PM performance and level of psychosocial integration in adults with moderate to severe TBI. The findings will advance theoretical understanding of the role of self-awareness in compensatory PM rehabilitation and skills generalization. COMP-MST has the potential to reduce the cost of rehabilitation and lifestyle support following TBI because the intervention could enhance generalization success and lifelong application of PM compensatory strategies. TRIAL REGISTRATION: New Zealand Clinical Trials Registry, ACTRN12615000996561 . Registered on 23 September 2015; retrospectively registered 2 months after commencement.

Do People With Severe Traumatic Brain Injury Benefit From Making Errors? A Randomized Controlled Trial of Error-Based and Errorless Learning.

BACKGROUND: Errorless learning (ELL) and error-based learning (EBL) are commonly used approaches to rehabilitation for people with traumatic brain injury (TBI). However, it is unknown whether making errors is beneficial in the learning process to promote skills generalization after severe TBI. OBJECTIVE: To compare the efficacy of ELL and EBL for improving skills generalization, self-awareness, behavioral competency, and psychosocial functioning after severe TBI. METHOD: A total of 54 adults (79% male; mean age = 38.0 years, SD = 13.4) with severe TBI were randomly allocated to ELL or EBL and received 8 × 1.5-hour therapy sessions that involved meal preparation and other goal-directed activities. The primary outcome was total errors on the Cooking Task (near-transfer). Secondary outcome measures included the Zoo Map Test (far-transfer), Awareness Questionnaire, Patient Competency Rating Scale, Sydney Psychosocial Reintegration Scale, and Care and Needs Scale. RESULTS: Controlling for baseline performance and years of education, participants in the EBL group made significantly fewer errors at postintervention (mean = 36.25; 95% CI = 32.5-40.0) than ELL participants (mean = 42.57; 95% CI = 38.8-46.3). EBL participants also demonstrated greater self-awareness and behavioral competency at postintervention than ELL participants ( P < .05). There were no significant differences on other secondary outcomes ( P > .05), or at the 6-month follow-up assessment. CONCLUSION: EBL was found to be more effective than ELL for enhancing skills generalization on a task related to training and improving self-awareness and behavioral competency.

Discrepancy between older clients' ability to read and comprehend and the reading level of written educational materials used by occupational therapists.

OBJECTIVE: The match between the reading level of occupational therapy education materials and older clients' reading ability and comprehension was determined. The sociodemographic and literacy characteristics that influenced clients' reading ability and comprehension were investigated. METHOD: The reading level of 110 written education materials (handouts, brochures, and information leaflets), distributed to older clients (65 years of age and older) by occupational therapists working in Queensland hospitals, was analyzed using the Flesch formula. The reading ability of 214 older persons (mean age 77 years, 63% female) was assessed using the Rapid Estimate of Adult Literacy in Medicine. Participants' comprehension of information of increasing reading difficulty was measured using the Cloze procedure. RESULTS: The written materials required a mean reading level between the ninth and tenth grades. Participants' mean reading ability was seventh to eighth grade. Therefore some materials may have been too difficult for participants to read and understand. Participants with a managerial or professional or clerical background (p= 0.001) and those who perceived they read well (p= 0.001) had a significantly higher reading ability. Older age was significantly related to poorer comprehension (p = 0.018), with participants 75 years of age and over having a mean comprehension score of 25.6 compared to 30.3 for those 65 to 74 years of age. CONCLUSION: Occupational therapists must analyze the reading level of the written education materials they develop for and use with clients by applying readability formulas. There should be a match between the reading level of written materials and clients' reading ability. Clients' reading ability may be assessed informally by discussing years of education and literacy habits or formally using reading assessments. Content and design characteristics should be considered when developing written education materials for clients.

Cognitive Deficits Underlying Error Behavior on a Naturalistic Task after Severe Traumatic Brain Injury.

People with severe traumatic brain injury (TBI) often make errors on everyday tasks that compromise their safety and independence. Such errors potentially arise from the breakdown or failure of multiple cognitive processes. This study aimed to investigate cognitive deficits underlying error behavior on a home-based version of the Cooking Task (HBCT) following TBI. Participants included 45 adults (9 females, 36 males) with severe TBI aged 18-64 years (M = 37.91, SD = 13.43). Participants were administered the HBCT in their home kitchens, with audiovisual recordings taken to enable scoring of total errors and error subtypes (Omissions, Additions, Estimations, Substitutions, Commentary/Questions, Dangerous Behavior, Goal Achievement). Participants also completed a battery of neuropsychological tests, including the Trail Making Test, Hopkins Verbal Learning Test-Revised, Digit Span, Zoo Map test, Modified Stroop Test, and Hayling Sentence Completion Test. After controlling for cooking experience, greater Omissions and Estimation errors, lack of goal achievement, and longer completion time were significantly associated with poorer attention, memory, and executive functioning. These findings indicate that errors on naturalistic tasks arise from deficits in multiple cognitive domains. Assessment of error behavior in a real life setting provides insight into individuals' functional abilities which can guide rehabilitation planning and lifestyle support.

Development and preliminary psychometric evaluation of the Self-Perceptions in Rehabilitation Questionnaire (SPIRQ) for brain injury rehabilitation.

OBJECTIVE: The Self-Perceptions in Rehabilitation Questionnaire (SPIRQ) is a brief measure developed to monitor client self-perceptions, motivation, and emotional reactions throughout rehabilitation. We describe the SPIRQ's development and preliminary psychometric evaluation. METHOD: One hundred five adults with traumatic brain injury attending two brain injury rehabilitation units completed the SPIRQ during occupational therapy sessions. A subset (n = 33) completed the SPIRQ twice over a 5- to 7-day interval to examine test-retest reliability. RESULTS: Exploratory factor analysis yielded three factors: Changes in Self and Life Plans, Self in Rehabilitation, and Emotional Reactions. Their internal consistency was sound (αs = .72-.83). Test-retest reliability was generally acceptable (rs = .67-.81), and scores did not significantly change between testing occasions (p > .05). CONCLUSION: We found preliminary support for the SPIRQ scales' reliability and construct validity. Future empirical evaluation and potential clinical applications of the SPIRQ in occupational therapy are discussed.

Comparison of error-based and errorless learning for people with severe traumatic brain injury: study protocol for a randomized control trial.

BACKGROUND: Poor skills generalization poses a major barrier to successful outcomes of rehabilitation after traumatic brain injury (TBI). Error-based learning (EBL) is a relatively new intervention approach that aims to promote skills generalization by teaching people internal self-regulation skills, or how to anticipate, monitor and correct their own errors. This paper describes the protocol of a study that aims to compare the efficacy of EBL and errorless learning (ELL) for improving error self-regulation, behavioral competency, awareness of deficits and long-term outcomes after TBI. METHODS/DESIGN: This randomized, controlled trial (RCT) has two arms (EBL and ELL); each arm entails 8 × 2 h training sessions conducted within the participants' homes. The first four sessions involve a meal preparation activity, and the final four sessions incorporate a multitasking errand activity. Based on a sample size estimate, 135 participants with severe TBI will be randomized into either the EBL or ELL condition. The primary outcome measure assesses error self-regulation skills on a task related to but distinct from training. Secondary outcomes include measures of self-monitoring and self-regulation, behavioral competency, awareness of deficits, role participation and supportive care needs. Assessments will be conducted at pre-intervention, post-intervention, and at 6-months post-intervention. DISCUSSION: This study seeks to determine the efficacy and long-term impact of EBL for training internal self-regulation strategies following severe TBI. In doing so, the study will advance theoretical understanding of the role of errors in task learning and skills generalization. EBL has the potential to reduce the length and costs of rehabilitation and lifestyle support because the techniques could enhance generalization success and lifelong application of strategies after TBI. TRIAL REGISTRATION: ACTRN12613000585729.