Online awareness: a concept analysis and review of assessment approaches for adults with neurological conditions.

PURPOSE: Self-awareness is a multifaceted phenomenon that comprises two main concepts: general awareness and online awareness. The latter is an emerging concept that requires further consensus on its definition. The aim of this paper is to define the key components of online awareness and identify approaches for measuring this concept for adults with neurological conditions. MATERIALS AND METHODS: Concept analysis using Rodgers' evolutionary method was used to systematically review and summarise relevant literature. Papers were included if they provided a definition of online awareness or method for assessing online awareness for an adult neurological population. RESULTS: Fifty-six papers were included in this review, with 21 online awareness assessment approaches identified. Online awareness was described to occur within the context of task performance, with the definition framework comprising four main aspects: 1/appraisal; 2/anticipation and prediction; 3/monitoring; and 4/self-evaluation. Self-regulation is a related concept that is considered to sit outside the conceptual boundaries of online awareness. CONCLUSIONS: The findings of this analysis highlight the complexity of online awareness and its importance in rehabilitation. Psychometrically robust measures of online awareness that are inclusive of the essential elements of this concept are needed to advance practice in this area.

Online awareness or awareness of performance within the context of an activity should be included in the comprehensive assessment of self-awareness for individuals with neurological conditions.Online awareness is a task-specific phenomenon that is activated in the context of task performance, and requires assessment across a range of tasks and environments.When assessing online awareness, careful consideration is required when selecting tasks to ensure they have the right level of challenge to elicit the need to monitor performance.The heterogeneity of existing online awareness assessments highlights the need to interpret outcomes with caution.Future efforts should be directed towards development of an online awareness assessment that includes key attributes of this concept.

Development of the Japanese version of the awareness questionnaire for assessment of self-awareness after acquired brain injury: reliability and validity.

BACKGROUND: The evaluation of impaired self-awareness (ISA) after brain injury is not widespread in Japan, and there is a lack of Japanese assessments of self-awareness. OBJECTIVES: To translate the original version of the Awareness Questionnaire (AQ), an instrument for assessing ISA, into Japanese using a validated method and examine its reliability and validity in inpatients with stroke. METHODS: This cross-sectional, prospective study enrolled 130 participants. The double-translation process was used to develop the Japanese version of the AQ. RESULTS: Data were collected from 120 patients. High intra-rater reliability was observed for the patient (Cronbach's α = 0.824) and clinician samples (Cronbach's α = 0.933). High intra- and inter-rater reliability were found for all AQ items [interclass coefficient (ICC) (1, 1) = 0.828, ICC (2, 1) = 0.852, ICC (3, 1) = 0.848]; however, the sub-item analysis revealed only moderate reliability. Validity assessment revealed a low but significant positive correlation (r = 0.209; p < 0.05) between the Japanese version of the AQ and the Japanese version of the Self-Regulation Skills Interview and a low but significant negative correlation (r = 0.197; p < 0.05) between the Japanese version of the AQ and the Mini-Mental State Examination. CONCLUSIONS: The Japanese version of the AQ was developed and applied to stroke patients, but the concept of post-stroke ISA may differ from ISA after traumatic brain injury, highlighting the need for a stroke-specific version of the AQ.

Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research.

Various forms of private investment are considered necessary for the sustainability of biobanks, yet pose significant challenges to public trust. To manage this tension, it is vital to identify the concerns of relevant stakeholders to ensure effective and acceptable policy and practice. This research examines the aspects of commercialisation that are of most concern to the Australian public (n = 800) and patients who had donated their tissue to two large disease specific (cancer) public biobanks (n = 564). Overall, we found a commercialisation effect (higher support for public relative to private) in relation to funding, research location and access to stored biospecimens. The effect was strongest for research locations and access compared to funding. A latent class analysis revealed the pattern of concern differed, with the majority (34.1%) opposing all aspects of commercialisation, a minority supporting all (15.7%), one quarter (26.8%) opposing some (sharing and selling tissue) but not others (research locations and funding), and a group who were unsure about most aspects but opposed selling tissue (23.5%). Patient donors were found to be more accepting of and unsure about most aspects of commercialisation. Members of the (general) public who were motivated to participate in biobanking were more likely to oppose some aspects while supporting others, while those who indicated they would not donate to a biobank were more likely to oppose all aspects of commercialisation. The results suggest that approaches to policy, engagement and awareness raising need to be tailored for different publics and patient groups to increase participation.

The Assessment and Prediction of Prospective Memory after Stroke.

OBJECTIVE: Prospective memory (PM) is the memory used when intentions are to be carried out in the future. Little research has been conducted examining PM after stroke. This study aimed to determine if PM is impaired after stroke through comparison of individuals with stroke to healthy controls. Additionally, it aimed to explore the predictors of PM performance post-stroke. METHOD: Twenty-eight individuals with stroke and 27 neurologically healthy controls completed the Cambridge Prospective Memory Test (CAMPROMPT), 2 self-report PM questionnaires, and multiple cognitive measures. RESULTS: Individuals with stroke performed significantly lower on both event- and time-based PM than controls on the CAMPROMPT, indicating PM impairment. Event-based PM after stroke was significantly predicted by age, retrospective memory (RM), and global cognitive function, whereas time-based PM was only predicted by the metacognitive skill of note-taking. Age and note-taking predicted time-based PM for controls, whereas only age predicted event-based PM for control participants. CONCLUSIONS: The findings of this study have helped to confirm that PM impairment does exist after stroke, particularly when using a standardised PM measure. Furthermore, PM impairment may be predicted by variables, such as age, strategy use, RM, and cognitive ability.

Exploring changing needs following minor stroke.

Medical advances have led to many of the severe consequences of stroke being averted. Consequently, more people are being discharged from hospital following treatment for what is classed as minor stroke. The needs of people with minor stroke have received little research attention. The aim of the current study was to conduct an exploratory prospective needs analysis to document the unmet health, rehabilitation and psychosocial needs of a recently hospitalised minor stroke cohort approximately 2 weeks (T1) and 2 months (T2) post-hospital discharge. An exploratory cohort design was used to explore the unmet health, service and social needs of 20 patients with minor stroke. Participants completed questionnaires (Survey of Unmet Needs and Service Use, Mayo-Portland Adaptability Inventory-4, Exeter Identity Transition Scales, RAND 36-Item Health Survey 1.0) at T1 and T2. Nine participants reported unmet needs at T1 and seven participants reported unmet needs at T2. Between T1 and T2, there was a significant improvement in perceived role limitations due to physical health. Participation in society was significantly better at T2. In conclusion, patients with minor stroke report health, service and social needs that are unmet by existing services. This patient cohort urgently requires co-ordinated services to detect and manage these unmet needs.

Trajectories of Rehabilitation across Complex Environments (TRaCE): design and baseline characteristics for a prospective cohort study on spinal cord injury and acquired brain injury.

PURPOSE: Trajectories of Rehabilitation across Complex Environments (TRaCE), a consented prospective cohort study, addresses a critical need to better understand access to the healthcare system after acute treatment and specialist inpatient rehabilitation for acquired disability. It is expected that this study will produce new knowledge on access to healthcare through the linkage of administrative, survey, and spatial datasets on the one cohort. This paper outlines the study design and baseline characteristics of the cohort. METHODS: The TRaCE cohort is comprised of 165 inpatients who are currently being followed up for 12 months after discharge from specialist rehabilitation for acquired brain injury (ABI) and spinal cord injury (SCI). This project combines a data linkage framework on health service use with a prospective survey on psychosocial wellbeing, geographical information systems to examine spatial accessibility to services, and qualitative interviews with a sub-cohort on experiences of service access. CONCLUSION: Ultimately, TRaCE will have strong translational impact on strategies for more targeted interventions to improve the healthcare system and support individuals with acquired disabilities in the long-term.

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.

Evaluation of a newly developed measure of theory of mind: The virtual assessment of mentalising ability.

This study examined the reliability and validity of the Virtual Assessment of Mentalising Ability (VAMA). The VAMA consists of 12 video clips depicting a social drama imposed within an interactive virtual environment with questions assessing the mental states of virtual friends. Response options capture the continuum of ability (i.e., impaired, reduced, accurate, and hypermentalising) within first- and second-order cognitive and affective theory of mind (ToM). Sixty-two healthy participants were administered the VAMA, three other ToM measures, and additional measures of neurocognitive abilities and social functioning. The VAMA had sound internal consistency and high test-retest reliability. Significant correlations between performance on the VAMA and other ToM measures provided preliminary evidence of convergent validity. Small to moderate correlations were observed between performance on the VAMA and neurocognitive tasks. Further, the VAMA was found to correlate significantly with indices of social functioning and was rated as more immersive, more reflective of everyday ToM processes, and was afforded a higher recommendation than an existing computer-based ToM task. These results provide potential evidence that the VAMA is an ecologically valid tool that is sensitive to the spread of ability that can occur in ToM subprocesses and may be a valuable addition to existing ToM measures. Future research should explore the validity and utility of the VAMA in larger, more diverse samples of healthy adult and clinical populations.

Experiences of adults with high-care needs and their family members with housing and support pathways in Australia.

PURPOSE: Many adults aged less than 65 years with high-care needs resulting from acquired disabilities are unable to access age-appropriate housing and support, and reside in residential aged care or live with family members who may struggle to navigate the disability support system. This qualitative study aimed to investigate the experiences of adults with high-care needs and their family members regarding pathways related to housing and support. METHOD: Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed. RESULTS: Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) "the fight, the battle and the war"; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships. CONCLUSIONS: Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles. Implications for Rehabilitation Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions. Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability. Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant "battle". Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.

Family members' needs and experiences of driving disruption due to health conditions or ageing.

PURPOSE: Family members often assume the caregiving role and provide practical assistance and emotional support when an individual is experiencing driving disruption due to health conditions or ageing. The purpose of this study was to understand the experiences, viewpoints and needs of family members with regards to an individual undergoing driving disruption across various population groups. METHOD: A scoping review was conducted through searching across six databases and hand searching articles published from 1985 to 2013. Findings from the articles specific to the aims of the review were extracted and summarised into common topics. RESULTS: Twenty-seven articles were included; dementia or cognitive impairment (16 articles), older adults (8 articles) and brain injury (3 articles). The most common topic raised was related to decisions and consequences for the individual. Other concerns were related to family members' occupational role changes, emotional and communication issues and support needs of family members and their recommendations for services. CONCLUSIONS: This review revealed the impact of driving disruption on family members but research is limited, especially in the area of brain injury. The majority of articles did not set out to explore family members' experiences and needs and this highlights an area that requires critical attention. IMPLICATIONS FOR REHABILITATION: Health professionals should be aware of the potential impact of driving disruption on family members. Family members frequently raise concerns regarding the decisions and consequences for their relative, but also bring up personal concerns such as changes to their own occupational roles and the communication and emotional issues they face during driving disruption. Unique challenges arise between family members of individuals of different health conditions, thus highlighting the importance of family caregiving research in various population groups.

Experiences of pathways, outcomes and choice after severe traumatic brain injury under no-fault versus fault-based motor accident insurance.

PRIMARY OBJECTIVE: To explore experiences of pathways, outcomes and choice after motor vehicle accident (MVA) acquired severe traumatic brain injury (sTBI) under fault-based vs no-fault motor accident insurance (MAI). METHODS: In-depth qualitative interviews with 10 adults with sTBI and 17 family members examined experiences of pathways, outcomes and choice and how these were shaped by both compensable status and interactions with service providers and service funders under a no-fault and a fault-based MAI scheme. Participants were sampled to provide variation in compensable status, injury severity, time post-injury and metropolitan vs regional residency. Interviews were recorded, transcribed and thematically analysed to identify dominant themes under each scheme. RESULTS: Dominant themes emerging under the no-fault scheme included: (a) rehabilitation-focused pathways; (b) a sense of security; and (c) bounded choices. Dominant themes under the fault-based scheme included: (a) resource-rationed pathways; (b) pressured lives; and (c) unknown choices. Participants under the no-fault scheme experienced superior access to specialist rehabilitation services, greater surety of support and more choice over how rehabilitation and life-time care needs were met. CONCLUSIONS: This study provides valuable insights into individual experiences under fault-based vs no-fault MAI. Implications for an injury insurance scheme design to optimize pathways, outcomes and choice after sTBI are discussed.

Unmet health and rehabilitation needs of people with long-term neurological conditions in Queensland, Australia.

The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long-term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi-structured interviews with 65 participants comprising 25 long-term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client-centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community-based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.

Pilot study of an assessment tool for measuring head and neck lymphoedema.

Head and neck lymphoedema (HNL) is a persistent symptom for many patients following head and neck cancer treatment. There is limited research into the benefits of lymphoedema treatment with this population. This pilot study (n=8) employs the Assessment of Lymphoedema of Head and Neck (ALOHA) system to evaluate treatment changes in this clinical population. The ALOHA assessment combines the use of the Princess Alexandra Hospital tape measurement system and the use of Tissue Dielectric Constant (MoistureMeterD) to measure HNL. Baseline measures were taken at the start of treatment and were repeated when the participants had reduced one level on the MD Anderson Cancer Centre HNL rating scale. The MoistureMeterD and three of the four tape measurement points showed a statistically significant change over time. This indicates the ALOHA system was useful in objectively detecting changes associated with clinical improvements.

Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality.

OBJECTIVE: Non-malignant brain tumours have the potential to considerably affect functional outcomes and quality of life, with an associated significant burden for carers. There is a lack of knowledge about the care and support needs of patients with a brain tumour and their carers, in the early period following discharge from initial hospitalisation. The purpose of this study was to understand the early post-discharge support services and care requirements of individuals with brain tumour and their family caregivers between short-term (2 weeks) post-discharge and medium-term (3 months) following hospital discharge. METHODS: A qualitative approach was utilised with semi-structured interviews of nine patients with brain tumour and five of their family caregivers. Thematic content analysis was used to generate in-depth descriptions of the participant's life experiences post-discharge following neurosurgical intervention. RESULTS: The overarching theme emerging from the data analysis related to patients and carers 'establishing a new reality' underpinned by three primary categories: (1) coping with available supports, (2) adjusting to routines and relationships and (3) emotional responses. CONCLUSION: Participants had a tendency to rely on informal support networks but identified unmet information and support needs particularly for carers. These findings highlight the need for more efficient and effective discharge preparation, referral to services and supports, provision of timely information and support for family caregivers of those with brain tumour.

Development of the Brief Assessment of Prospective Memory (BAPM) for use with traumatic brain injury populations.

Impairment of prospective memory (PM) is a common problem following traumatic brain injury (TBI) which can affect functional outcomes. PM failures in everyday life can be assessed using self-report questionnaires; however, existing measures tend to be lengthy, which may be problematic for individuals with fatigue and other cognitive impairments. This study aimed to develop a short form of the Comprehensive Assessment of Prospective Memory (CAPM) and examine its psychometric properties. Using theoretical and statistical considerations, the number of items on the CAPM was reduced to 16 including equal numbers representing the basic activities of daily living (BADL) and instrumental activities of daily living (IADL) subscales. The psychometric properties of the new measure, named the Brief Assessment of Prospective Memory (BAPM), were examined by secondary analysis of data from two samples of community dwelling adults (aged 17 to 91 years, n = 527, and 15 to 60 years, n = 95) with no history of brain injury, and a sample of rehabilitation patients with moderate to severe TBI (n = 45). Results indicate that the BAPM has a robust factor structure, strong agreement with the original CAPM, acceptable internal consistency and test-retest reliability, and evidence of criterion-related validity with psychosocial integration as the point of reference for people with TBI.

Perceived service and support needs during transition from hospital to home following acquired brain injury.

OBJECTIVE: To explore the service and support needs of individuals with acquired brain injury (ABI) and their family caregivers during the transition phase from hospital to home. METHODS: The study utilised a qualitative research design. Participants included 20 individuals with ABI and 18 family caregivers recruited from a specialist inpatient brain injury rehabilitation unit. Data collection entailed in-depth semi-structured interviews, which were conducted at three time points: pre-discharge, and 1- and 3-months post-discharge. Thematic analysis of the interview transcripts involved open, axial and selective coding techniques. RESULTS: The following primary themes, each with associated secondary themes, emerged from the analysis: (1) balancing the service and support equation; (2) negotiating the rehabilitation maze; (3) working with or against 'the system'. The first theme describes the varying types and level of support received by participants during the transition phase, while the second theme highlights the difficulties participants experienced in negotiating the rehabilitation process between hospital and home. The final theme depicts the challenges experienced by participants in accessing and utilising service support. CONCLUSIONS: The findings suggest that the scope of existing service models need to be extended to bridge the existing gap between inpatient and community services, thereby easing the impact of transition.

Impact of Enhanced Primary Care on equitable access to and economic efficiency of allied health services: a qualitative investigation.

OBJECTIVE: To evaluate new pathways to access allied health services introduced by the Enhanced Primary Care/Chronic Disease Management (EPC/CDM) initiative that may both increase or decrease equity to and efficiency in access. DESIGN: A qualitative study consisting of semi-structured in-depth interviews with a purposively selected group of allied health practitioners. PARTICIPANTS AND SETTING. Allied health practitioners in private practice in Queensland, Australia, from physiotherapy, occupational therapy, speech pathology, and exercise physiology backgrounds (n = 15). MAIN OUTCOME MEASURES. Interviews focused upon several issues including how referrals are made under the EPC/CDM initiative and what happens for patients once their five allotted sessions are expended. RESULTS. The EPC/CDM initiative appeared to address two key barriers of access to allied health services - costs to patient of access and patient awareness of benefits. However, gap payments may still be deterring economically disadvantaged patients from attending. DISCUSSION: The EPC/CDM initiative is increasing access to allied health services for people with chronic diseases. However, it is evident that this initiative may still not be meeting the needs of those most disadvantaged economically, and may lead to duplication of efforts by allied health practitioners when patients move between private and public health care sectors.

Inconsistency in classification and reporting of in-hospital falls.

OBJECTIVES: To investigate agreement between hospital staff on what constitutes a fall and should be recorded on an incident report, to identify factors that influence whether a scenario is classified as a fall, and to examine the effect of providing a definition of a fall on interrater agreement. DESIGN: Two interrater agreement trials with pre-postintervention design. SETTING: Seven hospitals. PARTICIPANTS: Four hundred forty-six hospital staff (nursing 76%, physiotherapy 14%, occupational therapy, 6%) working on participating wards over a 24-hour period. MEASUREMENTS: Fourteen video scenarios were played before participants, who were asked whether they would classify each scenario as a fall and whether they would complete an incident report in that scenario. A definition of a fall was then provided and the video scenarios replayed. Two definitions were investigated; the World Health Organization definition and a custom definition. RESULTS: Consensus was not evident in five of the 14 scenarios examined. Falls onto surfaces higher than the ground were less likely to be recorded on incident reports. Hospital and ward type influenced whether a scenario was classified as a fall. Overall agreement in classifying scenarios as a fall was only marginally greater after provision of the definition in both phases, although neither had an effect on whether staff would complete an incident report. CONCLUSION: Disagreement between hospital staff in what constitutes a fall may contribute to inconsistent research findings in this field and is not meaningfully improved through provision of a definition.

Risk assessment and management for providers of community-based rehabilitation to people with acquired brain injury: health professionals' perspectives.

PURPOSE: This study aimed to explore health professionals' perspectives regarding the presence, assessment and management of risks when providing community-based rehabilitation (CBR) to clients with acquired brain injury (ABI). METHOD: A qualitative approach using semi-structured interviews of health professionals working in CBR. RESULTS: The main themes were: (1) risk assessment in CBR settings is an informal, unstructured, complex, multi-phase and cyclical process extending over a period of time; (2) structured and standardised risk assessments were not considered ideal for use in CBR services catering for people with ABI; (3) CBR services face numerous challenges in providing effective risk assessment and management; (4) the risks encountered by health professionals in CBR settings are not always predictable or preventable; and (5) CBR risk management focuses on implementing a range of practical strategies. CONCLUSIONS: A flexible risk assessment process supported by a range of practical risk management strategies to minimise and manage potential risks is advocated by health professionals working in CBR services for people with ABI. There is a need for more research into the effectiveness of current risk assessment and management strategies for CBR services.

Using ICF-Environment factors to enhance the continuum of outpatient ABI rehabilitation: an exploratory study.

PURPOSE: This study utilized the Environment dimension of the ICF, to explore needs of outpatients and their family members in the context of system and professional needs in an outpatient rehabilitation unit. METHOD: A two-phase qualitative exploration comprised structured workshops with outpatient rehabilitation unit professional staff and semi-structured interviews on two occasions with 18 outpatients and their significant others. Data was thematically analysed and categorized according to ICF Environment dimensions. RESULTS: The study found that the ICF Environment dimension was a worthwhile area for research, beneficial for outpatient professionals, relevant to patient and family members' concerns, and useful for conceptualizing intervention. The study found that key foci for outpatient assistance at the Environment level should include: psychosocial support and relationships; information transfer and communication in transition to outpatient rehabilitation; and subsequent connection with community, vocational and support services. CONCLUSION: Research using the ICF Environment dimension provides a practical means of connecting some of the features of a community-oriented approach with hospital or centre-based outpatient rehabilitation.