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.

Impact of Early Personal Resources on Long-Term Psychosocial Outcomes After Moderate-to-Severe Traumatic Brain Injury: A Systematic Review.

OBJECTIVE: To investigate the relationship between preinjury or early personal resources and long-term psychosocial outcomes following moderate-to-severe traumatic brain injury (TBI) and examine evidence for the stability of personal resources over time. METHODS: The review protocol was registered with the International Register of Systematic Reviews (PROSPERO, Registration No. CRD4202341056). A search of PsycINFO, Cumulative Index to Allied Health Literature (CINAHL), MEDLINE, Scopus, and Web of Science was conducted from inception to February 23, 2023, for longitudinal studies involving adults with moderate-to-severe TBI that examined: (1) the relationship between preinjury or early personal resources (measured ≤6 months postinjury) and later psychosocial outcomes or (2) stability of personal resources over time with a minimum reassessment interval of 3 months. Two reviewers independently assessed eligibility and rated methodological quality of studies using a checklist informed by Strengthening the Reporting of Observational Studies in Epidemiology. RESULTS: A narrative synthesis was conducted on 14 eligible articles summarizing 12 studies (N = 826). Nine studies examined the impact of preinjury or early personal resources on long-term psychosocial outcomes, most typically at 12 months postdischarge. Out of 9 studies 7 indicated that self-reported preinjury or early personal resources, including productive coping, higher self-esteem and resilience, and lower neuroticism, were associated with better psychosocial outcomes. Evidence from 7 studies examining the stability of personal resources over time was generally mixed, with personality changes (eg, neuroticism, conscientiousness, and extraversion) more evident from informant ratings than self-ratings. CONCLUSION: Preinjury or early personal resources may influence later psychosocial outcomes after TBI. Further research is needed to investigate the stability of personal resources and factors mediating or moderating change across the adjustment trajectory.

Towards Translation of Novel Neurorehabilitation Systems: A Practical Approach to Usability Testing.

Usability testing is important for the effective translation of neurorehabilitation technologies but is often overlooked and under-reported. The aim of this paper is to present a method of collecting and analyzing usability data, using a think-aloud and semi-structured interview protocol and qualitative analysis techniques. We present a worked case study of this method with a novel neurorehabilitation system that utilizes thought-controlled robotics to partially restore lower-limb function of people with spinal cord injury (SCI). Five male participants (mean age = 32.6 years) with SCI who identified as users of related neurorehabilitation technologies completed the usability study. Video-recorded usability sessions utilized a combination of concurrent and retrospective think-aloud methods as well as semi-structured interviews. Recordings were analyzed to identify verbal and behavioral feedback from participants regarding system performance and acceptability. In total, 538 data points were logged, which were aggregated into 60 usability issues, 44 positive evaluations, and 31 strategies for improvement. The approach undertaken was novel in that we sought to not only capture usability issues but also system elements that were positively evaluated by intended users and strategies for improvement from the perspective of intended users. These observations will be used to inform the further development of the neurorehabilitation system.

End-User Perspectives of the Importance of Rehabilitation Technologies and Related Values for Implementation.

Despite the increased availability of rehabilitation technologies (such as robotics) and evidence to support their use, their adoption is still limited in practice. To begin to address this issue, we sought to better understand the perspectives of end-users regarding the implementation of rehabilitation technologies through an online survey. Fifty unique responses across Client (e.g., people with disability and carers), Allied Health (e.g., occupational and physical therapists, podiatrists, psychologists, dieticians, audiologists, exercise physiologists), and Medical (i.e., physicians and nurses) groups were analyzed. Respondents considered rehabilitation technologies to be important (median across groups of 9 out of 10). Across groups, value statements related to the implementation of rehabilitation technologies ranked from most to least important related to: benefits of technology to its intended end-user with disability, practical use of technologies, the technologies themselves (e.g., innovative, established, stand-alone), and their impact on health professionals or the health system as a whole. There were similarities and differences in ranking within and across end-user groups. The prioritization of statements indicates where development efforts can be focused to address end-user goals, and disparity in results across groups supports rich stakeholder engagement during rehabilitation technology development.

Factors that influence the adoption of rehabilitation technologies: a multi-disciplinary qualitative exploration.

BACKGROUND: Technological innovation is recognised as having the potential to enhance rehabilitation for people with disability. Yet, resistance to, and abandonment of, rehabilitation technology is prevalent and the successful translation of technology into rehabilitation settings remains limited. Therefore, the aim of this work was to develop an in-depth, multi-stakeholder perspective on what influences the adoption of rehabilitation technologies. METHODS: Semi-structured focus groups were conducted as part of a larger research project aiming to facilitate the co-design of a novel neurorestorative technology. Focus group data were analysed using a five-phase hybrid deductive-inductive approach to qualitative data analysis. RESULTS: Focus groups were attended by 43 stakeholders with expertise in one or more of the following fields: people with disability, allied health, human movement science, computer science, design, engineering, ethics, funding, marketing, business, product development, and research development. Six main themes influencing the adoption of technology in rehabilitation were identified: cost beyond the purchase price, benefits to all stakeholders, trust to be earned in technology, ease of technology operation, ability to access technology, and the 'co' in co-design. All six themes were found to be interrelated; in particular, the importance of direct stakeholder engagement in the development of rehabilitation technologies (the 'co' in co-design) was prevalent in all themes. CONCLUSIONS: A range of complex and interrelated factors influence the adoption of rehabilitation technologies. Importantly, many of the issues that have the potential to negatively impact rehabilitation technology adoption may be addressed during development by utilising the experience and expertise of stakeholders who influence its supply and demand. Our findings state that a wider cohort of stakeholders needs to be actively engaged in the development of rehabilitation technologies to better address the factors that contribute to technology underutilisation and abandonment and facilitate better outcomes for people with disability.

Stigma following acquired brain injury and spinal cord injury: relationship to psychological distress and community integration in the first-year post-discharge.

PURPOSE: This study aimed to compare stigma levels after acquired brain injury (ABI) and spinal cord injury (SCI) during the first 12-months post-discharge and investigate relationships between stigma, psychological distress and community integration. METHODS: 110 adults with ABI (55%) or SCI (45%) were recruited from brain and spinal cord injury inpatient rehabilitation units of a tertiary healthcare facility. They were administered Neuro-QOL Stigma subscale and Depression Anxiety and Stress Scales (DASS-21) at discharge, 3-months and 12-months post-discharge, and Community Integration Measure at 12-months post-discharge. RESULTS: Stigma levels did not significantly differ between individuals with ABI and SCI. However, stigma significantly decreased between discharge and 12-months post-discharge for the total sample. Stigma was positively associated with psychological distress at discharge and 3-months post-discharge, but not at 12-months post-discharge. Lower functional status and power wheelchair use were associated with higher stigma at 12-months post-discharge. Stigma at 3-months post-discharge predicted community integration at 12-months post-discharge, controlling for psychological distress and functional status. CONCLUSION: Experience of stigma in the first few months post-discharge may negatively impact individuals' community reintegration. The early post-discharge period may be a pivotal time for supporting individuals to explore disability and injury-related appraisals and enhance connection to their community.

Lower functional status and use of a power wheelchair after acquired neurological injury may increase the experience of stigma.Individuals with acquired brain injury or spinal cord injury who perceive high levels of stigma in the first few months post-discharge are more likely to experience poorer long-term community integration.The first few months post-discharge represent an important phase for health professionals to support individuals to explore their beliefs regarding disability and injury-related self-appraisals and enhance connection to their community.

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.