INTRODUCTION:The Living My Life Program was co-created with rural and remote stroke survivors by applying the Living My Life Framework as a lens on recovering. The aim of this study was to determine whether the Program stayed true to the lens when piloted and to refine the Program ahead of broader implementation. METHODS:A qualitative design integrating case study methods, narrative portraits, and features of constructivist grounded theory within an action research approach was used. Narrative portraits were crafted for five participants who piloted the individualised stroke recovery intervention and then analysed according to the categories of the Framework. CONSUMER AND COMMUNITY INVOLVEMENT:Four stroke survivors who piloted the Program contributed their experiences and reflections to craft the narratives, member-checked findings, provided feedback to refine the Program, and contributed as co-authors to disseminate findings. The fifth participant did not complete the Program; however, his contribution was acknowledged through a reflective narrative by the coach and cultural mentor. FINDINGS:Participants spoke about their unique experiences of the Program. Analysis confirmed the Program stayed true to the lens and illuminated further depth to the Framework. Conceptual (e.g., working out what works for me) and practical (e.g., options for measuring progress) refinements were incorporated iteratively. CONCLUSION:The Living My Life Program stayed true to the stroke survivors' lens on recovering. This suggests the Program can be used by health professionals to support stroke survivors to live their life as it evolves, while recovering their way, in their world. Stroke survivors' expertise needs to be prioritised when implementing the Program more broadly.

Objective To quantitatively describe therapists’ use of coaching with stroke survivors, in a hospital-based rehabilitation setting, to promote perseverance with longer-term practice. Design Prospective observational behavioural mapping study. Setting Rehabilitation unit of a regional public hospital in Queensland, Australia. Main measures A custom-designed behavioural mapping tool was used to collect rehabilitation session contextual data and therapists' use of coaching. Data were captured in 3-minute epochs for a maximum of 30 minutes. Data were analysed using descriptive statistics. Results Thirty-six rehabilitation sessions, including 34 participants (therapists n = 22, stroke survivors n = 12) were observed. Rehabilitation sessions were mostly inpatient ( n = 33, 91.7%), one-on-one ( n = 30, 83.3%), and conducted in the physiotherapy ( n = 160, 45.5%) or occupational therapy ( n = 155, 44.0%) gym. Strategies to promote perseverance were used in 76.7% ( n = 267) of observed epochs. The most frequently used strategy was monitoring the quality of practice and the least frequently used strategy was utilising a support person to facilitate practice. Conclusion Coaching that may promote perseverance with practice was regularly used by therapists during hospital-based rehabilitation sessions. Coaching that may enable longer-term perseverance beyond a therapist-dependent rehabilitation model was less commonly observed.

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.

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

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

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.

Background and Purpose: The flexible exercise participation program (FEPP) is a novel intervention developed to enable individuals with multiple sclerosis (MS) participate and progress in an exercise or sport of their choice. The FEPP is underpinned by guidelines on aerobic exercise for individuals with MS and is supported by a physiotherapist using behaviour change techniques. As part of a FEPP feasibility trial, the aim of this nested study was to explore the experience of participation in the FEPP from the perspective of individuals with MS. The objectives were to (i) determine the acceptability of the FEPP and (ii) identify recommendations for improvement. Methods: A mixed methods study using a sequential explanatory design was conducted. Part I consisted of a quantitative participant survey. Survey data were analysed descriptively using SPSS and informed the protocol for part II - qualitative interviews. Interview data were analysed thematically using NVivo. Part III consisted of integration of quantitative and qualitative data to allow greater explanation of survey responses. Individuals with MS who had participated in the FEPP feasibility trial were invited to take part in the study. Results: The FEPP was highly acceptability to the 10 participants. Five themes emerged to describe the experience of participating in the FEPP: (i) exploring exercise boundaries, (ii) measuring energy, (iii) acknowledging accountability, (iv) adjusting to exercising in a pandemic and (v) sustaining participation. Recommendations for improving the FEPP included changes to energy level monitoring and incorporation of peer support mechanisms. Discussion: Participants found the FEPP highly acceptable and valued the flexibility to choose their own activity and the health professional support. Based on participant recommendations, future versions of the FEPP will include daily rather than weekly monitoring of exercise and peer support to further enable individuals with MS to find the right balance with exercise and sport.

OBJECTIVE The aim of this study was to explore the experience of participation in sport and exercise for individuals with multiple sclerosis (MS) with minimal disability. The objectives were to gain an understanding of key factors that influence participation in sport and exercise and to determine support required by individuals with MS to participate in their choice of sport and exercise for as long as possible. METHODS A qualitative, descriptive study utilizing three focus groups was conducted. Data were analysed thematically aided by NVivo software. Participants were individuals with MS who had an Expanded Disability Status Scale score of 0-4, indicating full ambulation. All participants were living in northern Queensland, Australia. RESULTS Sixteen individuals participated; 63% of whom regularly participated in sport or exercise. All participants viewed sport and exercise positively and identified inherent benefits of exercise. Five key themes emerged to describe the experience of participating in sport and exercise: "personally engaging with exercise," "influencing barriers and enablers of exercise," "sustaining independence," "integrating exercise into lifestyle," and "getting the balance right." Most participants felt that advice and guidance from health professionals about the optimum mode and dose (how much and how often) of exercise was lacking. CONCLUSIONS Participation in sport and exercise was valued by individuals with MS with minimal disability for sustaining independence and an active lifestyle. Personalized exercise advice from health professionals was the key support identified by participants to assist them to maintain an active lifestyle for as long as possible.

Background and aim(s): Multiple sclerosis (MS) is commonly diagnosed in young adulthood at a time of prime participation in an active lifestyle involving sport, employment and family life. Exploration of the experience of participating in sport, for individuals in the early stages of MS, is necessary to identify how to maintain or introduce an active lifestyle. The aim of this study is to explore the experience of participation in sport with individuals with MS. Method: A qualitative descriptive study utilising three focus groups was conducted with individuals living in northern Queensland, Australia with a diagnosis of MS. Individuals with an Expanded Disability Status Scale score of 0-4, indicating full ambulation, were included. The sporting experience, together with enablers and barriers to participation was explored. Data were analysed thematically using NVivo software. Result(s): Sixteen individuals, fourteen female and two male with a mean age of 41 years (±SD 11) participated in the study. Most participants were undertaking sport, for example running, cycling, boxing, dancing and squash. Independence was a key driver for sport, with a view that it would maintain mobility and enable social participation. Barriers to sport encompassed personal and environmental factors such as fear, cost, family constraints and tropical temperatures. Individuals’ support strategies to negotiate barriers and facilitate activity were often developed through experience rather than formal advice or support. Access to a health professional with knowledge in MS in relation to sport/exercise was perceived to be beneficial but was however, uncommon. Conclusion: Sport was considered to be important for maintaining independence and facilitating an active lifestyle for people in the early stages of MS. Personalised advice and direction from professionals towards suitable exercise were recommended, particularly in the early stages of the disease.

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.