Peer-support groups for stroke survivors are often organized and facilitated by health authorities and disability related organizations within rehabilitation programs. However, the benefits of peer-led, peer-support groups have not yet been evaluated. The purpose of this study was to explore participants’ experiences in a community-based, peer-led, peer-support group for stroke survivors.
Semi-structured interviews were conducted and analyzed following constructivist grounded theory with 11 participants who attended a peer-led, peer-support group for people with stroke. The data were also complemented with one quantitative rating question regarding their experience attending the group.
Three themes were identified. Meeting unmet needs after stroke captured how the group was created by stroke survivors to address life in the community post-stroke. Buddies helping buddies highlighted that stroke recovery is a shared process at the group, where members help and encourage each other to contribute what they can. Creating authentic friendships revealed how people experienced social connection and developed relationships in the peer-led, peer-support group.
Peer-led, peer-support groups may provide opportunities for stroke survivors to connect with like-minded people in their community to have fun while exploring their abilities.
To examine associations between post-stroke participation and personal factors, including demographic characteristics, self- and threat appraisals, and personality variables.
An exploratory cross-sectional study with purpose-designed survey was completed online or via mail. The survey was comprised of demographic and health-related questions and multiple questionnaires, including the Stroke Impact Scale Version 3.0 (SISv3) (participation/perceived recovery), Community Integration Questionnaire (CIQ) (participation), Head Injury Semantic Differential III (pre- vs post-stroke self-concept/self-discrepancy), Appraisal of Threat and Avoidance Questionnaire (threat appraisal), Life Orientation Test – Revised (optimism) and Relationships Questionnaire (adult attachment style) that measured variables of interest. Sixty-two participants, aged 24–96 years who had experienced a stroke (one or multiple events) and had returned to community living, completed the survey. Associations were examined using correlations, and univariate and multiple linear regression analyses.
Regression analysis showed that greater participation, measured using the CIQ, was associated with younger age, female gender, lower self-discrepancy and higher perceived recovery, explaining 69% of the variability in CIQ participation. Further, greater participation on the SISv3 was associated with lower self-discrepancy and higher perceived recovery, explaining 64% of the variability in SISv3 participation.
Results indicate that personal factors, particularly self-appraisals like self-concept/self-discrepancy, in combination with perceived recovery may be important in explaining a large portion of variance in post-stroke participation. Specifically, findings highlight the interrelatedness of self-concept change, perceived recovery and post-stroke participation. Further longitudinal research is needed to clarify the directionality of these associations throughout the hospital-to-home transition.
People with acquired brain injury (ABI) may experience behaviours of concern that require therapy services, including behaviour support. In Australia, the implementation of a National Disability Insurance Scheme (NDIS) and development of the NDIS Quality and Safeguards Commission, has led to significant changes to behaviour support workforce processes, and the way behaviour support is funded, regulated and delivered to people with ABI who are Scheme participants. The aim of this study was to explore the current and future provider market of professionals providing behaviour supports to Scheme participants who experience ABI.
An anonymous survey was designed and distributed via social media channels, an email listserv and professional association newsletters to professionals working within the NDIS in Australia. Data were analysed using descriptive statistics and content analysis.
One hundred and two surveys responses were analysed. A majority of professionals had an average understanding of the NDIS Quality and Safeguard Commission rules and policies on behaviour support. Responses to current and future registration as an NDIS Practitioner indicated the workforce gap could increase by between 17 and 26%. Respondents also raised concerns about the lack of training and experience of allied health professional students and graduates in addressing behaviours of concern. Responses to the open-ended question highlighted additional issues in the provision of behaviour support within the NDIS.
This research highlighted the need for an NDIS behaviour support workforce strategy and supply-side market intervention to ensure a viable and sustainable workforce for people with ABI who need behaviour support.
The National Disability Insurance Scheme (NDIS) offers opportunity against a historical background of underfunded and fragmented services for people with disability. For people with acquired brain injury (ABI), concerns have been raised about how they access NDIS individualised funded supports. The aim of this research was to explore how community-dwelling individuals with ABI in Queensland navigate the NDIS participant pathway to individualised funded supports.
This study used a multiple case study design within a policy implementation framework. Twelve people with ABI, nine family members and eight NDIS funded and mainstream service providers participated. Data was collected from relevant NDIS documentation, health records and semi-structured interviews with individuals with ABI, family members, and service providers.
The current study highlighted the complexity of navigating the NDIS participant pathway of access, planning, implementation and review for people with ABI, their family and service providers. The NDIS pathway was impacted by the insurance and market based NDIS model itself, time, communication, and the requirement for external supports. Equally, the process was affected by environmental factors, individual person and injury factors as well as service providers, with a range of outcomes evident at the individual, family and system level.
Findings suggest that the NDIS has struggled to make specific allowance for people with ABI and the complexity of their disabilities. Providing people with ABI access to the NDIS Complex Support Needs Pathway may redress many of the difficulties people with ABI experience accessing and using NDIS funded supports.
Participation in leisure activities is significantly impacted following acquired brain injury (ABI). Despite this being a common community rehabilitation goal, re-engagement with leisure activities following ABI is poorly addressed within Australian community rehabilitation services, which often cater to a mixed-diagnostic group of both ABI and non-ABI clients.
To evaluate the feasibility and effect of a leisure reintegration group programme within a community rehabilitation service.
A single-site, pre- and post-test feasibility study was conducted. Three cohorts of a semi-structured leisure group programme were offered, each conducted over eight sessions within 4 weeks. The Nottingham Leisure Questionnaire (NLQ) and Leisure Satisfaction Measure (LSM) were used as primary outcome measures. Measures of acceptability, including adherence, and a post-intervention participant survey were also completed.
Of the 14 consenting participants, 9 completed all outcome measures. Mean change score for the NLQ was −3.63 (p = 0.11) and the LSM 4.25 (p = 0.46). The programme was well attended (79%), acceptable for ABI and non-ABI participants and able to be implemented within an existing community rehabilitation service.
Providing a leisure reintegration group programme met an identified need, developed client and carer capacity and could be delivered within a community rehabilitation service for clients with mixed diagnoses including ABI. A larger trial is warranted to examine the effectiveness and cost-effectiveness of this intervention for people with ABI.
To examine differences in health characteristics and health behaviors between rural and non-rural stroke survivors in the USA.
Data were extracted from the 2017 and 2019 Behavioral Risk Factor Surveillance System (BRFSS) to compare prevalences of health characteristics (i.e., diabetes, disability, poor health, high cholesterol, hypertension, no health care coverage, weight status) and health behaviors (i.e., fruit consumption, vegetable consumption, physical inactivity, high alcohol consumption, smoking) among community-dwelling stroke survivors, stratified by rural status (i.e., rural vs. non-rural). Logistic regression was used to calculate odds ratios (ORs) for health characteristics and health behaviors to examine the association of rural status with each variable of interest (reference group=non-rural).
Data from 14,599 respondents (rural: n = 5,039; non-rural: n = 9,560) were available for analysis. The majority of respondents were female (61.4%), non-Hispanic white (83.2%), previously married (56.1%), had at least some college education (55.2%), and had an annual household income ≥USD $25,000 (56.9%). Prevalences of disability, poor health, weekly aerobic exercise, and smoking were higher among rural respondents compared to non-rural respondents. Logistic regression showed increased odds (odds ratio range: 1.1–1.2) for these variables among rural respondents; however, odds ratios were attenuated after controlling for sociodemographic and health characteristics.
We did not find evidence of differences in the investigated health characteristics and health behaviors between rural and non-rural community-dwelling stroke survivors in the USA. Additional research is needed to confirm these findings and to identify alternative sociodemographic and health factors that may differ between rural and non-rural community-dwelling stroke survivors.
Social disinhibition is becoming increasingly recognised in the neuropsychological literature as a complex and debilitating sequalae associated with acquired frontal lobe damage. Despite this, the term has been inconsistently defined and described in both clinical and research contexts. The purpose of this paper was to explore and examine the concept of social disinhibition in the context of brain injury and other organic neurological conditions.
A literature search for articles published in the English language from journal inception to June 2021 was conducted using MEDLINE, PsycInfo, Embase, CINAHL and Web of Science. A ‘concept analysis’ was conducted on the identified literature using Walker & Avant’s (2019) framework.
The analysis suggested that while several terms are often used interchangeably with social disinhibition, including impulsivity and behavioural dysregulation, these terms may be differentiated and defined separately within the broader domain of ‘behaviours of concern’. Attributes, antecedents and consequences of social disinhibition were also identified and discussed.
Clarifying the concept of social disinhibition has important implications in both clinical and research contexts, including increased understanding of the behaviours, more accurate estimates of incidence and prevalence, and the development and implementation of targeted rehabilitation programmes.
Deficits in visuospatial attention, known as neglect, are common following brain injury, but underdiagnosed and poorly treated, resulting in long-term cognitive disability. In clinical settings, neglect is often assessed using simple pen-and-paper tests. While convenient, these cannot characterise the full spectrum of neglect. This protocol reports a research programme that compares traditional neglect assessments with a novel virtual reality attention assessment platform: The Attention Atlas (AA).
The AA was codesigned by researchers and clinicians to meet the clinical need for improved neglect assessment. The AA uses a visual search paradigm to map the attended space in three dimensions and seeks to identify the optimal parameters that best distinguish neglect from non-neglect, and the spectrum of neglect, by providing near-time feedback to clinicians on system-level behavioural performance. A series of experiments will address procedural, scientific, patient, and clinical feasibility domains.
Analyses focuses on descriptive measures of reaction time, accuracy data for target localisation, and histogram-based raycast attentional mapping analysis; which measures the individual’s orientation in space, and inter- and intra-individual variation of visuospatial attention. We will compare neglect and control data using parametric between-subjects analyses. We present example individual-level results produced in near-time during visual search.
The development and validation of the AA is part of a new generation of translational neuroscience that exploits the latest advances in technology and brain science, including technology repurposed from the consumer gaming market. This approach to rehabilitation has the potential for highly accurate, highly engaging, personalised care.
Deficits in decision-making are a common consequence of moderate-severe traumatic brain injury (TBI). Less is known, however, about how individuals with TBI perform on moral decision-making tasks. To address this gap in the literature, the current study probed moral decision-making in a sample of individuals with TBI using a widely employed experimental measure.
We administered a set of 50 trolley-type dilemmas to 31 individuals with TBI and 31 demographically matched, neurotypical comparison participants. We hypothesized that individuals with TBI would be more likely to offer utilitarian responses to personal dilemmas than neurotypical peers.
In contrast to our hypothesis, we observed that individuals with TBI were not more likely to offer utilitarian responses for personal dilemmas.
Our results suggest that moral decision-making ability is not uniformly impaired following TBI. Rather, neuroanatomical (lesion location) and demographic (age at injury) characteristics may be more predictive of a disruption in moral decision-making than TBI diagnosis or injury severity alone. These results inform the neurobiology of moral decision-making and have implications for characterizing patterns of spared and impaired cognitive abilities in TBI.
The purpose of this study was to compare the self- and observer ratings of capacity limitations in patients with neurological conditions. Research on this topic is relevant for assessing the patients’ ability to participate in work and social life and improving collaborative patient-clinician relationships.
The self- and observer ratings of capacity limitations in a sample of N = 245 patients with neurological conditions from a rehabilitation facility were compared and assessed using the short rating of activity limitations and participation restrictions in mental disorders according to the International Classification of Functioning, Disability and Health (Mini-ICF-APP) and the equivalent self-rating questionnaire (Mini-ICF-APP-S).
Paired-samples t-tests revealed significant differences between the self- and observer ratings for six out of 13 capacity dimensions. On average, the patients rated the capacity dimensions adherence to regulations, planning and structuring of tasks, professional competency and endurance as significantly less limited, in comparison to the observers (small to medium effect sizes). The self-ratings for limitation of contact with others and self-care were only marginally higher than the observer ratings.
The findings show that psychological capacity limitations occur in patients with neurological conditions. In clinical practice, limitations in each capacity dimension and discrepancies in patient- and clinician-ratings should be thoroughly assessed. This is especially relevant in patients with neurological conditions who have a potential tendency to underestimate or deny their disability.
To evaluate the correlation between self-reported balance confidence and community integration related to home management for community-dwelling adults with acquired brain injury (ABI).
This is a study of 141 participants over the age of 18 with a history of ABI, living in the community, who completed an online survey. The survey included a series of demographic questions followed by the Activities-Specific Balance Confidence Scale (ABC) and the Home Integration subscale of the Community Integration Questionnaire (CIQ-H).
Data from 119 completed surveys were included in the analysis. Significant positive correlations were found between the ABC and the CIQ-H total scores (rs = 0.241, p = 0.008). There was no significant difference between CIQ-H total scores in individuals by injury type (traumatic vs non-traumatic) or by level of severity (mild, moderate, severe) (p > 0.05). There was no significant difference between ABC total scores by injury type (p > 0.05).
Higher levels of balance confidence may be associated with improved community integration related to home management for individuals with traumatic and non-traumatic BI. This study’s results support future research to evaluate the integration of strategies to improve balance confidence as a component of interdisciplinary assessment and rehabilitation to maximize community integration in community-dwelling adults with ABI.
This study explored non-specialist audiological clinical practice in the context of traumatic brain injury (TBI), and whether such practices incorporated considerations of TBI-related complexities pertaining to identification, diagnosis and management of associated auditory and vestibular disturbances.
A cross-sectional online survey exploring clinical practice, TBI-related training and information provision was distributed to audiologists across Australia via Audiology Australia and social media. Fifty audiologists, 80% female and 20% male, participated in this study. Years of professional practice ranged from new graduate to more than 20 years of experience.
Clear gaps of accuracy in knowledge and practice across all survey domains relating to the identification, diagnosis and management of patients with auditory and/or vestibular deficits following TBI were evident. Further, of the surveyed audiologists working in auditory and vestibular settings, 91% and 86%, respectively, reported not receiving professional development for the diagnosis and management of post-traumatic audio-vestibular deficits.
Inadequate resources, equipment availability and TBI-related training may have contributed to the gaps in service provision, influencing audiological management of patients with TBI. A tailored TBI approach to identification, diagnosis and management of post-traumatic auditory and vestibular disturbances is needed.
Cognitive impairment is common post-stroke. There is a need to understand patterns of early cognitive recovery post-stroke to guide both clinical and research practice. The aim of the study was to map the trajectory of cognitive recovery during the first week to 90-days post-stroke using serial computerised assessment.
An observational cohort study recruited consecutive stroke patients admitted to a stroke unit within 48 hours of onset. Cognitive function was assessed using the computerised Cambridge Neuropsychological Test Automated Battery (CANTAB) daily for seven days, then 14, 30 and 90 days post-stroke. The CANTAB measured visual episodic memory and learning, information processing speed, visuo-spatial working memory, complex sustained attention and mental flexibility. Repeated measures MANOVA/ANOVA with Least Squares Difference post-hoc analyses were performed to ascertain significant change over time.
Forty-eight participants, mean age 73, primarily mild, ischaemic stroke, completed all assessment timepoints. There was a trajectory of early, global cognitive improvement, indicative of a post-stroke delirium, that largely stabilised between 6 and 14-days post-stroke. Change over time was examined within each cognitive test, with one measure stabilising by day 6 (Reaction Time) and others detecting improving performances up to 14 days post-stroke.
Serial, computerised cognitive assessment can effectively map post-stroke cognitive recovery and revealed an early phase of global improvement over 14 days that is evidence for an acute post-stroke delirium. Resolution of post-stroke delirium in the second week following mild stroke indicates more extensive neuropsychological testing may be undertaken earlier than previously thought.
There is growing recognition that people with disability have the right to be involved in making decisions that affect their lives. Decision-making support has emerged as one way to support people with cognitive disability to make decisions, however, there is a paucity of research that explores how disability support workers can be upskilled to provide decision-making support to this group. The aim of the research was to explore the impact of an evidence-based online training course on disability support workers of adults with cognitive disability. Changes in knowledge about decision-making support and confidence in providing decision-making support were explored, attitudes towards decision-making support, and facilitators and barriers. Participants completed an online training course and responded to a survey on three occasions: baseline, post-training, and at 2-month follow-up. Ninety-nine disability support workers across Australia participated in the online training and completed the baseline and post-training surveys. Thirty-six participants completed the training and all three surveys. The results revealed that there were statistically significant improvements in knowledge, confidence, and attitudes from baseline to post-training, which were maintained at 2-month follow-up. Barriers to decision-making support included service providers or other supporters, including the family of the person with cognitive disability, whilst a key enabler was knowing about the decision-making support principles. This research demonstrates that an evidence-based online training course about decision-making support can be effective in building capacity in disability support workers. There are, however, several barriers that must be addressed to facilitate the implementation of decision-making support.
]]>Discourse analysis is one of the clinical methods commonly used to assess the language ability of individuals with traumatic brain injury (TBI). However, the majority of published analytic frameworks are not geared for highlighting the pragmatic aspect of discourse deficits in acquired language disorders, except for those designed for quantifying conversational samples. This study aimed to examine how pragmatic competence is impaired and reflected in spoken monologues in Chinese speakers with TBI.
Discourse samples of five tasks (personal narrative, storytelling, procedural, single- and sequential picture description) were elicited from ten TBI survivors and their controls. Each discourse sample was measured using 16 indices (e.g., number of informative words, percentage of local/global coherence errors, repeated words or phrases) that corresponded to the four Gricean maxims. Twenty-five naïve Chinese speakers were also recruited to perform perceptual rating of the quality of all 50 TBI audio files (five discourse samples per TBI participant), in terms of erroneous/inaccurate information, adequacy of amount of information given, as well as degree of organization and clarity.
The maxim of quantity best predicted TBI’s pragmatic impairments. Naïve listeners’ perception of pragmatics deficits correlated to measures on total and informative words, as well as number and length of terminable units. Clinically, personal narrative and storytelling tasks could better elicit violations in pragmatics.
Applying Gricean maxims in monologic oral narratives could capture the hallmark underlying pragmatic problems in TBI. This may help provide an additional approach of clinically assessing social communications in and subsequent management of TBI.
Mood problems are common after stroke, and screening is recommended. Training may support staff knowledge and implementation of screening, but the feasibility of training programmes in the Australian healthcare system has not been formally established. This study aimed to assess the feasibility of a mood screening training for a multidisciplinary team (MDT) of stroke clinicians working in a post-acute inpatient rehabilitation service.
Twelve staff from a rehabilitation service at a major hospital in Sydney, Australia participated in a 3-h interactive training session. The feasibility of running the course, assessment of knowledge gained via a consolidation exercise and quiz and acceptability of the training were assessed via focus groups.
The in-person modality of the training hindered recruitment and assessment of participants’ knowledge, though the actual measures themselves appeared appropriate. Nine participants provided feedback in two focus groups. Thematic analysis identified positive reactions to the training. However, low self-efficacy persisted and organisational/socio-cultural barriers to implementation emerged. Following training, the medical officers of the MDT had successfully implemented routine screening.
Overall, the training appeared acceptable and to foster knowledge in staff. However, limitations to recruitment and administering evaluations were identified. The development of flexible online training may improve future evaluations of screening training programmes/pathways.
]]>Sleep is essential for our overall health and wellbeing. Unfortunately, stroke often induces insomnia, which has been shown to impede rehabilitation and recovery of function. Cognitive behavioral therapy for insomnia (CBT-I) is the treatment of choice for insomnia in the general population and is efficacious both when delivered face-to-face or online. The primary aim of this study was to evaluate efficacy of blended CBT-I (eCBT-I) in five poststroke participants with insomnia according to DSM-5 criteria.
A randomized multiple baseline design was used to evaluate improvements in total sleep time, sleep onset latency, sleep efficiency, nocturnal awakenings and sleep quality. The intervention included six weeks of eCBT-I combined with two face-to-face sessions.
All participants completed the intervention. One participant stopped using the diary, while the other four completed it fully. All five sleep diary measures improved, significantly so for nocturnal awakenings. Moreover, after completion of the treatment, four out of five participants no longer fulfilled DSM-5 criteria for insomnia disorder
This is the first study to show that blended CBT-I is potentially effective in participants with post-stroke insomnia. The findings justify extension to a randomized controlled trial.
Decompressive craniectomy is part of the acute management of several neurosurgical illnesses, and is commonly followed by cranioplasty. Data are still scarce on the functional and cognitive outcomes following cranioplasty. We aim to evaluate these outcomes in patients who underwent cranioplasty following traumatic brain injury (TBI) or stroke.
In this prospective cohort, we assessed 1-month and 6-month neuropsychological and functional outcomes in TBI and stroke patients who underwent cranioplasty at a Brazilian tertiary center. The primary outcome was the change in the Digits Test at 1 and 6 months after cranioplasty. Repeated measures general linear models were employed to assess the patients' evolution and interactions with baseline characteristics. Effect size was estimated by the partial η2.
A total of 20 TBI and 14 stroke patients were included (mean age 42 ± 14 years; 52.9% male; average schooling 9.5 ± 3.8 years; 91.2% right-handed). We found significant improvements in the Digits Tests up to 6 months after cranioplasty (p = 0.004, partial η2 = 0.183), as well as in attention, episodic memory, verbal fluency, working memory, inhibitory control, visuoconstructive and visuospatial abilities (partial η2 0.106–0.305). We found no interaction between the cranioplasty effect and age, sex or schooling. Patients submitted to cranioplasty earlier (<1 year) after injury had better outcomes.
Cognitive and functional outcomes improved after cranioplasty following decompressive craniectomy for stroke or TBI. This effect was consistent regardless of age, sex, or education level and persisted after 6 months. Some degree of spontaneous improvement might have contributed to the results.
Individuals living in residential aged care facilities with cognitive decline are at risk of social isolation and decreased wellbeing. These risks may be exacerbated by decline in communication skills. There is growing awareness that group singing may improve sense of wellbeing for individuals with dementia. However, to date few studies have examined broader rehabilitative effects on skills such as communication of individuals with dementia.
To determine the feasibility and acceptability of the MuSic to Connect (MuSiCON) choir and language/communication assessment protocol in people with cognitive impairment living in non-high-care wards of a residential facility.
Six individuals with mild-moderate cognitive impairment participated (age range 55–91 years, five female, one male). A mixed method approach was used. Quantitative outcomes included attendance rates, quality of life and communication measures. The qualitative measure was a brief survey of experience completed by participants and carers post-intervention.
Overall, MuSiCON was perceived as positive and beneficial, with high attendance, perception of improved daily functioning and high therapeutic benefit without harmful effects. While there was no reliable change in communication skills over the course of the six-week intervention, most participants successfully engaged in the conversational task, suggesting it is a suitable and ecologically valid method for data collection
The MuSiCON protocol demonstrated feasibility and was well received by participants and staff at the residential facility. A co-design approach is recommended to improve upon feasibility, acceptability and validity of the assessment protocol prior to Phase II testing.