Feasibility and impact of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph disease in the Top End of Australia.

INTRODUCTION: Physical activity and lifestyle programs are scarce for people with hereditary ataxias and neurodegenerative diseases. Aboriginal families in the Top End of Australia who have lived with Machado-Joseph disease (MJD) for generations co-designed a physical activity and lifestyle program called the Staying Strong Toolbox. The aim of the present study was to explore feasibility and impact of the program on walking and moving around. METHODS: A mixed-methods, multiple case study design was used to pilot the Staying Strong Toolbox. Eight individuals with MJD participated in the program for 4 weeks. Participants tailored their own program using the Toolbox workbook. Families, support workers and researchers facilitated each individual's program. Feasibility was determined through program participation, adherence, coinciding or serious adverse events, participant acceptability and cost. Impact was determined through measures of mobility, ataxia, steps, quality of life, wellbeing and goal attainment, assessed before and after the program. RESULTS: All participants completed the program, averaging five activity sessions per week, 66 minutes per session, of walking (63.5%), strengthening/balance-based activities (16%), cycling (11.4%) and activities of daily living, cultural and lifestyle activities (10.5%). Seven participants were assessed on all measures on three occasions (baseline, pre-program and post-program), while one participant could not complete post-program measures due to ceremonial responsibilities. All had significant improvements in mobility, steps taken and ataxia severity (p<0.05) after the program. Quality of life and wellbeing were maintained. CONCLUSION: The program helped participants remain 'strong on the inside and outside'. Participants recommended implementation in 4-week blocks and for the program to be shared internationally. The Staying Strong Toolbox program was feasible for families with MJD. The program had a positive impact on walking and moving around, with participants feeling stronger on the outside (physically) and inside (emotionally, spiritually, psychosocially). The program could be adapted for use by other families with MJD.

Building the capacity of rural allied health generalists through online postgraduate education: a qualitative evaluation.

INTRODUCTION: Workforce development is a key strategy for building the capacity and capability of a workforce. Accordingly, rural and remote practising allied health professionals require relevant and accessible continuing professional development to enhance their knowledge and skills and improve consumer health outcomes. This study explored the impact of an online postgraduate allied health rural generalist education program, from the perspective of allied health professionals participating in the program and their supervisors and managers. METHODS: A qualitative, exploratory descriptive study design was employed using semistructured interviews. This study formed the qualitative component of a larger convergent mixed-methods evaluation study aimed at evaluating the reach, quality and impact of an online rural generalist education program for allied health professionals in Australia. Allied health professionals from seven professions enrolled in an online postgraduate rural generalist education program, the rural generalist program (RGP). Their designated work-based supervisors and their managers who were responsible for the operational management of the study sites were invited to participate in the study. All participants were employed in rural and remote health services in 10 sites across four Australian states. Study participants' experience and perceptions of the impact of the RGP on themselves, the healthcare service and the broader community were explored using semistructured interviews. Data were thematically analysed site by site, then across sites using Braun and Clarke's (2012) systematic six-phase approach. Provisional codes were generated and iteratively compared, contrasted and collapsed into secondary, more advanced codes until final themes and subthemes were developed. RESULTS: Semistructured interviews were conducted with 23 allied health professionals enrolled in the RGP and their 27 work-based supervisors and managers across the 10 study sites. Three final themes were identified that describe the impact of the RGP: building capability as rural generalist allied health professionals; recruiting and building a rural workforce; enhancing healthcare services and consumer outcomes. CONCLUSION: Allied health professionals working in rural and remote locations valued the RGP because it provided accessible postgraduate education that aligned with their professional and clinical needs. Integrated into a supportive, well-structured development pathway, the experience potentiated learning and facilitated safe clinical practice that met the needs of consumers and organisations. The findings demonstrate that effective work-integrated learning strategies can enhance the development of essential capabilities for rural practice and support early-career allied health professionals' transition to rural and remote practice. These experiences can engage allied health professionals in a way that engenders a desire to remain working in rural and remote contexts.

Stroke survivors' perspectives on recovering in rural and remote Australia: A systematic mixed studies review.

INTRODUCTION: Stroke survivors recovering in rural and remote locations often have little or no access to rehabilitation services. The purpose of this study was to review the literature on recovering in rural and remote Australia, from the perspective of stroke survivors. Use of technology to support recovery was also explored. METHODS: A systematic mixed studies review was conducted and reported according to the ENTREQ and PRISMA statements. MEDLINE (Ovid), CINAHL (EBSCOhost), Scopus, PsycINFO (ProQuest), Cochrane Library and Google Scholar were searched from inception to May 2021 for studies investigating stroke survivors' perspectives on recovering in rural or remote Australia. Qualitative, quantitative or mixed methods studies were included. Methodological quality was assessed using the Mixed Methods Appraisal Tool. Studies were not excluded or weighted according to methodological quality. To review the perspectives of stroke survivors on recovering, findings of included studies were mapped to the Living My Life framework and integrated using a convergent qualitative synthesis. The review protocol was registered on PROSPERO (CRD42017064990). RESULTS: Eight studies met the inclusion criteria: six qualitative, one quantitative and one mixed methods. Methodological quality of the small number of studies ranged from low to high, indicating further high-quality research is needed. Included studies involved 152 stroke survivors in total. Review findings indicated that recovering was driven by working towards what mattered to stroke survivors, in ways that matched their beliefs and preferences and that worked for them in their world, including use of technology. CONCLUSION: Stroke survivors recovering in rural and remote locations want to live their life by doing what matters to them, despite the challenges they face. They want support in ways that work for them in their environment. Further research is required to tailor support for stroke survivors that is specific to their life in rural and remote locations.

Perseverance with technology-facilitated home-based upper limb practice after stroke: a systematic mixed studies review.

BACKGROUND: Technology is being increasingly investigated as an option to allow stroke survivors to exploit their full potential for recovery by facilitating home-based upper limb practice. This review seeks to explore the factors that influence perseverance with technology-facilitated home-based upper limb practice after stroke. METHODS: A systematic mixed studies review with sequential exploratory synthesis was undertaken. Studies investigating adult stroke survivors with upper limb disability undertaking technology-facilitated home-based upper limb practice administered ≥ 3 times/week over a period of ≥ 4 weeks were included. Qualitative outcomes were stroke survivors' and family members' perceptions of their experience utilising technology to facilitate home-based upper limb practice. Quantitative outcomes were adherence and dropouts, as surrogate measures of perseverance. The Mixed Methods Appraisal Tool was used to assess quality of included studies. RESULTS: Forty-two studies were included. Six studies were qualitative and of high quality; 28 studies were quantitative and eight were mixed methods studies, all moderate to low quality. A conceptual framework of perseverance with three stages was formed: (1) getting in the game; (2) sticking with it, and; (3) continuing or moving on. Conditions perceived to influence perseverance, and factors mediating these conditions were identified at each stage. Adherence with prescribed dose ranged from 13 to 140%. Participants were found to be less likely to adhere when prescribed sessions were more frequent (6-7 days/week) or of longer duration (≥ 12 weeks). CONCLUSION: From the mixed methods findings, we propose a framework for perseverance with technology-facilitated home-based upper limb practice. The framework offers opportunities for clinicians and researchers to design strategies targeting factors that influence perseverance with practice, in both the clinical prescription of practice and technology design. To confirm the clinical utility of this framework, further research is required to explore perseverance and the factors influencing perseverance. Registration: PROSPERO CRD42017072799- https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=72799.

Cardiac rehabilitation services for people in rural and remote areas: an integrative literature review.

INTRODUCTION: Morbidity and mortality from heart disease continues to be high in Australia with cardiac rehabilitation (CR) recognised as best practice for people with heart disease. CR is known to reduce mortality, reoccurrence of heart disease, hospital readmissions and costs, and to improve quality of life. Australian Aboriginal and Torres Strait Islanders (Australian First Peoples or Indigenous peoples) have a greater need for CR due to their higher burden of disease. However, CR referral, access and attendance remain low for all people who live in rural and remote areas. The aim of this integrative review was to identify barriers, enablers and pathways to CR for adults living independently in rural and remote areas of high-income countries, including Australia. METHODS: Studies were identified through five online data bases, plus reference lists of the selected studies. The studies focused on barriers and enablers of CR for adults in rural and remote areas of Australia and other high-income countries, in English peer-reviewed journals (2007-2016). A mix of qualitative, quantitative and mixed method studies were reviewed through a modified Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), followed by a critical review and thematic analysis. RESULTS: Sixteen studies were selected: seven qualitative, four quantitative and five mixed method. Five themes that influence CR attendance were identified: referral, health services pathways and planning; cultural and geographic factors necessitating alternative and flexible programs; professional roles and influence; knowing, valuing, and psychosocial factors; and financial costs - personal and health services. Factors identified that impact on referral and access to CR were hospital inpatient education programs on heart disease and risk factors; discharge processes including CR eligibility criteria and referral to ensure continuum and transition of care; need for improved accessibility of services, both geographically and through alternative programs, including home based with IT and/or telephone support. Also, the need to ensure that health professionals understand, value and support CR; the impact of mental health, coping with change and competing priorities; costs including travel, medications and health professional consultations; as well as low levels of involvement of Australian First Peoples in their own care and poor cultural understanding by non-Australian First Peoples staff all negatively impact on CR access and attendance. CONCLUSION: This study found weak systems with low referral rates and poor access to CR in rural and remote areas. Underlying factors include lack of health professional and public support, often based on poor perception of benefits of CR, compounded by scarce and inflexible services. Low levels of involvement of Australian First Peoples, as well as a lack of cultural understanding by non-Australian First Peoples staff, is evident. Overall, the findings demonstrate the need for improved models of referral and access, greater flexibility of programs and professional roles, with management support. Further, increased education and involvement of Australian First Peoples, including Indigenous health workers taking a lead in their own people's care, supported by improved education and greater cultural awareness of non-Australian First Peoples staff, is required.

Self-Administered, Home-Based SMART (Sensorimotor Active Rehabilitation Training) Arm Training: A Single-Case Report.

This single-case, mixed-method study explored the feasibility of self-administered, home-based SMART (sensorimotor active rehabilitation training) Arm training for a 57-yr-old man with severe upper-limb disability after a right frontoparietal hemorrhagic stroke 9 mo earlier. Over 4 wk of self-administered, home-based SMART Arm training, the participant completed 2,100 repetitions unassisted. His wife provided support for equipment set-up and training progressions. Clinically meaningful improvements in arm impairment (strength), activity (arm and hand tasks), and participation (use of arm in everyday tasks) occurred after training (at 4 wk) and at follow-up (at 16 wk). Areas for refinement of SMART Arm training derived from thematic analysis of the participant's and researchers' journals focused on enabling independence, ensuring home and user friendliness, maintaining the motivation to persevere, progressing toward everyday tasks, and integrating practice into daily routine. These findings suggest that further investigation of self-administered, home-based SMART Arm training is warranted for people with stroke who have severe upper-limb disability.

The effect of altering a single component of a rehabilitation programme on the functional recovery of stroke patients: a systematic review and meta-analysis.

OBJECTIVE: To evaluate the effect of altering a single component of a rehabilitation programme (e.g. adding bilateral practice alone) on functional recovery after stroke, defined using a measure of activity. DATA SOURCES: A search was conducted of Medline/Pubmed, CINAHL and Web of Science. REVIEW METHODS: Two reviewers independently assessed eligibility. Randomized controlled trials were included if all participants received the same base intervention, and the experimental group experienced alteration of a single component of the training programme. This could be manipulation of an intrinsic component of training (e.g. intensity) or the addition of a discretionary component (e.g. augmented feedback). One reviewer extracted the data and another independently checked a subsample (20%). Quality was appraised according to the PEDro scale. RESULTS: Thirty-six studies (n = 1724 participants) were included. These evaluated nine training components: mechanical degrees of freedom, intensity of practice, load, practice schedule, augmented feedback, bilateral movements, constraint of the unimpaired limb, mental practice and mirrored-visual feedback. Manipulation of the mechanical degrees of freedom of the trunk during reaching and the addition of mental practice during upper limb training were the only single components found to independently enhance recovery of function after stroke. CONCLUSION: This review provides limited evidence to support the supposition that altering a single component of a rehabilitation programme realises greater functional recovery for stroke survivors. Further investigations are required to determine the most effective single components of rehabilitation programmes, and the combinations that may enhance functional recovery.

Perseverance with home-based upper limb practice after stroke: perspectives of stroke survivors and their significant others.

PURPOSE: The aim of this study was to explore factors that influence stroke survivors' ability to persevere with home-based upper limb practice. METHODS: A qualitative descriptive study embedded within a theoretical framework was conducted. Data were collected through semi-structured focus group, dyadic, and individual interviews. The Theoretical Domains Framework and Capability, Opportunity, Motivation - Behaviour (COM-B) model guided data collection and directed content analysis. FINDINGS: Participants were 31 adult stroke survivors with upper limb impairment, with 13 significant other/s, who were living at home in Queensland, Australia. Three central tenants aligned with the COM-B and six themes were identified. Stroke survivors' capability to persevere was influenced by being physically able to practice and being able to understand, monitor and modify practice, their opportunity to persevere was influenced by accessing therapy and equipment required for practice and fitting practice into everyday life, and their motivation to persevere was influenced by having goals and experiencing meaningful outcomes and having support and being accountable. CONCLUSION: Persevering with practice is multifaceted for stroke survivors. All facets need to be addressed in the design of strategies to enhance stroke survivors' ability to persevere and in turn, enhance their potential for continued upper limb recovery.IMPLICATIONS FOR REHABILITATIONMany stroke survivors do not persevere with long-term home-based upper limb practice despite the belief that high dose practice will promote continued recovery.Therapists need to support stroke survivors to setup individualised goal-based home programs that they can complete independently, or with support, within their everyday life.Stroke survivors need coaching to monitor and modify their practice and map their progress, so that they can recognise and experience meaningful recovery.To optimise upper limb recovery after stroke, strategies to enhance stroke survivors' capability, opportunity, and motivation to persevere across the continuum of recovery, need to be co-designed by stroke survivors, therapists and researchers.

The efficacy of SMART Arm training early after stroke for stroke survivors with severe upper limb disability: a protocol for a randomised controlled trial.

BACKGROUND: Recovery of upper limb function after stroke is poor. The acute to subacute phase after stroke is the optimal time window to promote the recovery of upper limb function. The dose and content of training provided conventionally during this phase is however, unlikely to be adequate to drive functional recovery, especially in the presence of severe motor disability. The current study concerns an approach to address this shortcoming, through evaluation of the SMART Arm, a non-robotic device that enables intensive and repetitive practice of reaching by stroke survivors with severe upper limb disability, with the aim of improving upper limb function. The outcomes of SMART Arm training with or without outcome-triggered electrical stimulation (OT-stim) to augment movement and usual therapy will be compared to usual therapy alone. METHODS/DESIGN: A prospective, assessor-blinded parallel, three-group randomised controlled trial is being conducted. Seventy-five participants with a first-ever unilateral stroke less than 4 months previously, who present with severe arm disability (three or fewer out of a possible six points on the Motor Assessment Scale [MAS] Item 6), will be recruited from inpatient rehabilitation facilities. Participants will be randomly allocated to one of three dose-matched groups: SMART Arm training with OT-stim and usual therapy; SMART Arm training without OT-stim and usual therapy; or usual therapy alone. All participants will receive 20 hours of upper limb training over four weeks. Blinded assessors will conduct four assessments: pre intervention (0-weeks), post intervention (4-weeks), 26 weeks and 52 weeks follow-up. The primary outcome measure is MAS item 6. All analyses will be based on an intention-to-treat principle. DISCUSSION: By enabling intensive and repetitive practice of a functional upper limb task during inpatient rehabilitation, SMART Arm training with or without OT-stim in combination with usual therapy, has the potential to improve recovery of upper limb function in those with severe motor disability. The immediate and long-term effects of SMART Arm training on upper limb impairment, activity and participation will be explored, in addition to the benefit of training with or without OT-stim to augment movement when compared to usual therapy alone. TRIAL REGISTRATION: ACTRN12608000457347.

Extracorporeal Shock Wave Therapy (ESWT) as a treatment for recurrent Neurogenic Heterotopic Ossification (NHO).

PRIMARY OBJECTIVE: To describe the effects of extracorporeal shock wave therapy (ESWT) on neurogenic heterotopic ossification (NHO). RESEARCH DESIGN: A single case study was considered the most appropriate methodology in this situation. METHODS AND PROCEDURES: The subject was a 43 year old female 10 years post-traumatic brain injury with recurring NHO around the hip joint. Baseline assessments of pain using a 10-point VAS, range of motion of the hip using a goniometer and walking ability (number of steps over a standard distance) were conducted. Four applications of ESWT using a Minispec™ Extracorporeal Shock Wave Lithotripsy machine (Medispec Int. USA) administered over 6 weeks to the anterolateral aspect of the right hip. Follow-up assessments were conducted weekly over the period of intervention and then monthly for 5 months. MAIN OUTCOMES AND RESULTS: Immediately following treatment, pain was reduced to 0 on the VAS scale; hip range of motion increased and the number of steps over a standard distance reduced, indicating increased step length. At 5-month follow-up, without further ESWT intervention, these results were maintained. CONCLUSION: This case study suggests that ESWT may be a non-invasive, low risk intervention for the management of NHO.

SMART Arm with outcome-triggered electrical stimulation: a pilot randomized clinical trial.

BACKGROUND: The SMART (SensoriMotor Active Rehabilitation Training) Arm is a nonrobotic device designed to allow stroke survivors with severe paresis to practice reaching. It can be used with or without outcome-triggered electrical stimulation (OT-stim) to augment movement. The aim of this study was to evaluate the efficacy of SMART Arm training when used with or without OT-stim, in addition to usual care, as compared with usual care alone during inpatient rehabilitation. METHODS: Eight stroke survivors received 20 hours of SMART Arm training over 4 weeks; they were randomly assigned to either (1) SMART Arm training with OT-stim or (2) SMART Arm training alone. Usual therapy was also provided. A historical cohort of 20 stroke survivors formed the control group and received only usual therapy. The primary outcome was Motor Assessment Scale Item 6, Upper Arm Function. RESULTS: Findings for all participants were comparable at baseline. SMART Arm training, with or without OT-stim, led to a significantly greater improvement in upper arm function than usual therapy alone (P = .024). There was no difference in improvement between training with or without OT-stim. Initial motor severity and presence of OT-stim influenced the number of repetitions performed and the progression of SMART Arm training practice conditions. CONCLUSION: Usual therapy in combination with SMART Arm training, with or without OT-stim, appears to be more effective than usual therapy alone for stroke survivors with severe paresis. These findings warrant further investigation into the benefits of SMART Arm training for stroke survivors with severe paresis undergoing inpatient rehabilitation during the subacute phase of recovery.

Stroke survivors' perspectives on decision-making about rehabilitation and the prospect of taking recovery-promoting drugs: A qualitative study.

Objectives: To investigate factors which influence stroke survivors' decision-making about their rehabilitation and the prospect of taking recovery-promoting drugs, to enhance their recovery. Methods: Seventeen stroke survivors who had undertaken stroke rehabilitation, and three spouses, participated in focus groups and individual interviews in northern Queensland, Australia. Inductive thematic analysis of the interview data was conducted in accordance with Braun and Clarke's six-phase process. Results: Two specific, pivotal decision points during participants' stroke recovery process were identified: 1) overall, when deciding what rehabilitation they would undertake and hypothetically what recovery-promoting drugs they would take, and 2) on a daily basis, when deciding whether to participate in rehabilitation and take recovery-promoting drugs on any given day. Six themes which described factors influencing their decision-making were: 'My options for rehabilitation and recovery-promoting drugs'; 'The costs of rehabilitation and recovery-promoting drugs'; 'My recovery goals'; 'What I can deal with today'; 'The people my rehabilitation and recovery-promoting drugs affect'; and 'Fitting rehabilitation and recovery-promoting drugs into my life.' These themes were applicable at either one or both of the identified decision points. Conclusion: Factors that influence stroke survivors' decision-making, overall and on a day-to-day basis, need to be considered to ensure they can make the best decisions for themselves to achieve their full recovery potential. Understanding the conditions under which a stroke survivor would take a recovery-promoting drug will contribute to the development of dosing protocols to which stroke survivors could adhere.

Training-induced modifications of corticospinal reactivity in severely affected stroke survivors.

When permitted access to the appropriate forms of rehabilitation, many severely affected stroke survivors demonstrate a capacity for upper limb functional recovery well in excess of that formerly considered possible. Yet, the mechanisms through which improvements in arm function occur in such profoundly impaired individuals remain poorly understood. An exploratory study was undertaken to investigate the capacity for brain plasticity and functional adaptation, in response to 12-h training of reaching using the SMART Arm device, in a group of severely affected stroke survivors with chronic upper limb paresis. Twenty-eight stroke survivors were enroled. Eleven healthy adults provided normative data. To assess the integrity of ipsilateral and contralateral corticospinal pathways, transcranial magnetic stimulation was applied to evoke responses in triceps brachii during an elbow extension task. When present, contralateral motor-evoked potentials (MEPs) were delayed and reduced in amplitude compared to those obtained in healthy adults. Following training, contralateral responses were more prevalent and their average onset latency was reduced. There were no reliable changes in ipsilateral MEPs. Stroke survivors who exhibited contralateral MEPs prior to training achieved higher levels of arm function and exhibited greater improvements in performance than those who did not initially exhibit contralateral responses. Furthermore, decreases in the onset latency of contralateral MEPs were positively related to improvements in arm function. Our findings demonstrate that when severely impaired stroke survivors are provided with an appropriate rehabilitation modality, modifications of corticospinal reactivity occur in association with sustained improvements in upper limb function.

Investigating changes in quality of life and function along the lifespan for people with spinal cord injury.

OBJECTIVE: To track changes in quality of life and function for people with spinal cord injury (SCI) along the lifespan. DESIGN: A wave panel design in which data were collected annually over 5 years across 6 strata that represented different periods since injury. SETTING: Telephone interviews with participants in their home environment. PARTICIPANTS: People (n=270) who had sustained a traumatic SCI in Queensland, Australia, over the previous 60 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Quality of life was measured using the World Health Organization Quality of Life-8. Human functioning was measured in 3 components. Body structure/function was measured using the Secondary Conditions Surveillance Instrument. Activity was measured using the motor subscale of the FIM (mFIM) and the Clinical Outcomes Variables Scale. Participation was measured using the Community Integration Measure (CIM) and the Impact on Participation and Autonomy questionnaire. RESULTS: Quality of life remained relatively constant across the lifespan. For body structure/function, there was a significant increase in secondary conditions with time since injury. There was a significant decrease in activity as measured by the mFIM for higher functioning individuals. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation. CONCLUSIONS: The findings of this study highlight that people with SCI are able to maintain quality of life and participation along the lifespan; however, increases in secondary conditions and a decline in function over time are likely. Rehabilitation services could work more effectively at addressing secondary prevention through enhanced monitoring over time, while broader societal responses are likely to hold the key to optimizing human functioning.

Staying Strong Toolbox: Co-design of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph disease in the Top End of Australia.

Physical activity has positive health implications for individuals living with neurodegenerative diseases. The success of physical activity programs, particularly in culturally and linguistically diverse populations, is typically dependent on their alignment with the culture, lifestyle and environmental context of those involved. Aboriginal families living in remote communities in the Top End of Australia invited researchers to collaborate with them to co-design a physical activity and lifestyle program to keep individuals with Machado-Joseph disease (MJD) walking and moving around. The knowledge of Aboriginal families living with MJD, combined with findings from worldwide MJD research, formed the foundation for the co-design. An experience-based co-design (EBCD) approach, drawing from Indigenous and Participatory methodologies, was used. An expert panel of individuals with lived experience of MJD participated in a series of co-design phases. Prearranged and spontaneous co-design meetings were led by local community researchers within each phase. Data was collected using a culturally responsive ethnographic approach and analysed thematically. Sixteen panel members worked to develop the 'Staying Strong Toolbox' to cater for individuals with MJD who are 'walking strong'; or 'wobbly'; or 'in a wheelchair'. Based on the 'Staying Strong Framework', the Toolbox was developed as a spiral bound A3 book designed to guide the user to select from a range of activities to keep them walking and moving around and to identify those activities most important to them to work on. The 'Staying Strong Toolbox' is a community driven, evidence based resource for a physical activity and lifestyle program for Aboriginal families with MJD. The Toolbox provides a guide for health professionals and support workers to deliver person-centred support to Aboriginal families with MJD, and that can be modified for use by other families with MJD or people with other forms of ataxia around the world.

Exercise intervention to prevent falls and enhance mobility in community dwellers after stroke: a protocol for a randomised controlled trial.

BACKGROUND: Stroke is the most common disabling neurological condition in adults. Falls and poor mobility are major contributors to stroke-related disability. Falls are more frequent and more likely to result in injury among stroke survivors than among the general older population. Currently there is good evidence that exercise can enhance mobility after stroke, yet ongoing exercise programs for general community-based stroke survivors are not routinely available. This randomised controlled trial will investigate whether exercise can reduce fall rates and increase mobility and physical activity levels in stroke survivors. METHODS AND DESIGN: Three hundred and fifty community dwelling stroke survivors will be recruited. Participants will have no medical contradictions to exercise and be cognitively and physically able to complete the assessments and exercise program. After the completion of the pre-test assessment, participants will be randomly allocated to one of two intervention groups. Both intervention groups will participate in weekly group-based exercises and a home program for twelve months. In the lower limb intervention group, individualised programs of weight-bearing balance and strengthening exercises will be prescribed. The upper limb/cognition group will receive exercises aimed at management and improvement of function of the affected upper limb and cognition carried out in the seated position. The primary outcome measures will be falls (measured with 12 month calendars) and mobility. Secondary outcome measures will be risk of falling, physical activity levels, community participation, quality of life, health service utilisation, upper limb function and cognition. DISCUSSION: This study aims to establish and evaluate community-based sustainable exercise programs for stroke survivors. We will determine the effects of the exercise programs in preventing falls and enhancing mobility among people following stroke. This program, if found to be effective, has the potential to be implemented within existing community services. TRIAL REGISTRATION: The protocol for this study is registered with the Australian New Zealand Clinical Trials Registry (ACTRN12606000479505).

Safety and efficacy of recovery-promoting drugs for motor function after stroke: A systematic review of randomized controlled trials.

OBJECTIVE: To investigate the efficacy and safety of drug interventions to promote motor recovery post-stroke. DATA SOURCES: CENTRAL, CINAHL, Embase, MEDLINE, SCOPUS and Web of Science. STUDY SELECTION: Published human randomized controlled trials in which the primary intervention was a drug administered to promote motor recovery post-stroke, vs placebo. DATA EXTRACTION: Standardized pro forma used to extract safety and efficacy data; Cochrane Collaboration risk of bias assessment tool performed to assess risk of bias. DATA SYNTHESIS: Fifty randomized controlled trials from 4,779 citations were included. An overall trend of high risk of attrition (n = 27) and reporting bias (n = 36) was observed. Twenty-eight different drug interventions were investigated, 18 of which demonstrated statistically significant results favouring increased motor recovery compared with control intervention. Forty-four studies measured safety; no major safety concerns were reported. CONCLUSION: Candidate drug interventions promoting motor recovery post-stroke were identified, specifically selective serotonin reuptake inhibitors and levodopa; however, the high risk of bias in many trials is concerning. Drugs to improve motor function remain an important area of enquiry. Future research must focus on establishing the right drug intervention to be administered at an optimal dose and time, combined with the most effective adjuvant physical therapy to drive stroke recovery.

What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia.

OBJECTIVES: Machado-Joseph disease (MJD) is the most common spinocerebellar ataxia worldwide. Prevalence is highest in affected remote Aboriginal communities of the Top End of Australia. Aboriginal families with MJD from Groote Eylandt believe 'staying strong on the inside and outside' works best to keep them walking and moving around, in accordance with six key domains that form the 'Staying Strong' Framework. The aim of this current study was to review the literature to: (1) map the range of interventions/strategies that have been explored to promote walking and moving around (functional mobility) for individuals with MJD and; (2) align these interventions to the 'Staying Strong' Framework described by Aboriginal families with MJD. DESIGN: Scoping review. DATA SOURCES: Searches were conducted in July 2018 in MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Databases. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Peer-reviewed studies that (1) included adolescents/adults with MJD, (2) explored the effects of any intervention on mobility and (3) included a measure of mobility, function and/or ataxia were included in the review. RESULTS: Thirty studies were included. Few studies involved participants with MJD alone (12/30). Most studies explored interventions that aligned with two 'Staying Strong' Framework domains, 'exercising your body' (n=13) and 'searching for good medicine' (n=17). Few studies aligned with the domains having 'something important to do' (n=2) or 'keeping yourself happy' (n=2). No studies aligned with the domains 'going country' or 'families helping each other'. CONCLUSIONS: Evidence for interventions to promote mobility that align with the 'Staying Strong' Framework were focused on staying strong on the outside (physically) with little reflection on staying strong on the inside (emotionally, mentally and spiritually). Findings suggest future research is required to investigate the benefits of lifestyle activity programmes that address both physical and psychosocial well-being for families with MJD.

'Staying strong on the inside and outside' to keep walking and moving around: Perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia.

Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia's Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where ~1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants' preferred language(s). Participants described their experience of living with MJD, from 'knowing about MJD', 'protecting yourself from MJD' and 'adjusting to life with MJD'. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. 'Staying strong on the inside and outside' (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: 'Exercising your body', 'having something important to do', 'keeping yourself happy', 'searching for good medicine', 'families helping each other' and 'going country'. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care.

Training of reaching in stroke survivors with severe and chronic upper limb paresis using a novel nonrobotic device: a randomized clinical trial.

BACKGROUND AND PURPOSE: Severe upper limb paresis is a major contributor to disability after stroke. This study investigated the efficacy of a new nonrobotic training device, the Sensorimotor Active Rehabilitation Training (SMART) Arm, that was used with or without electromyography-triggered electrical stimulation of triceps brachii to augment elbow extension, permitting stroke survivors with severe paresis to practice a constrained reaching task. METHODS: A single-blind, randomized clinical trial was conducted with 42 stroke survivors with severe and chronic paresis. Thirty-three participants completed the study, of whom 10 received training using the SMART Arm with electromyography-triggered electrical stimulation, 13 received training using the SMART Arm alone, and 10 received no intervention (control). Training consisted of 12 1-hour sessions over 4 weeks. The primary outcome measure was "upper arm function," item 6 of the Motor Assessment Scale. Secondary outcome measures included impairment measures; triceps muscle strength, reaching force, modified Ashworth scale; and activity measures: reaching distance and Motor Assessment Scale. Assessments were administered before (0 weeks) and after training (4 weeks) and at 2 months follow-up (12 weeks). RESULTS: Both SMART Arm groups demonstrated significant improvements in all impairment and activity measures after training and at follow-up. There was no significant difference between these 2 groups. There was no change in the control group. CONCLUSIONS: Our findings indicate that training of reaching using the SMART Arm can reduce impairment and improve activity in stroke survivors with severe and chronic upper limb paresis, highlighting the benefits of intensive task-oriented practice, even in the context of severe paresis.