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.

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.

Consumer experience of a flexible exercise participation program (FEPP) for individuals with multiple sclerosis: A mixed-methods study.

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.

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.

A qualitative study of active participation in sport and exercise for individuals with multiple sclerosis.

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.

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.