Development of a Digital Tool for People With a Long-Term Condition Using Stroke as a Case Example: Participatory Design Approach.

BACKGROUND: In patient care, demand is growing for digital health tools to enable remote services and enhance patient involvement. People with chronic conditions often have multiple health problems, and long-term follow-up is recommended to meet their needs and enable access to appropriate support. A digital tool for previsit preparation could enhance time efficiency and guide the conversation during the visit toward the patient's priorities. OBJECTIVE: This study aims to develop a digital previsit tool and explore potential end user's perceptions, using a participatory approach with stroke as a case example. METHODS: The digital tool was developed and prototyped according to service design principles, informed by qualitative participant data and feedback from an expert panel. All features were processed in workshops with a team that included a patient partner. The resulting tool presented questions about health problems and health information. Study participants were people with stroke recruited from an outpatient clinic and patient organizations in Sweden. Development and data collection were conducted in parallel. For conceptualization, the initial prototype was based on the Post-Stroke Checklist and research. Needs and relevance were explored in focus groups, and we used a web survey and individual interviews to explore perceived utility, ease of use, and acceptance. Data were thematically analyzed following the Framework Method. RESULTS: The development process included 22 participants (9 women) with a median age of 59 (range 42-83) years and a median of 51 (range 4-228) months since stroke. Participants were satisfied or very satisfied with using the tool and recommended its use in clinical practice. Three main themes were constructed based on focus group data (n=12) and interviews (n=10). First, valuable accessible information illuminated the need for information to confirm experiences, facilitate responses, and invite engagement in their care. Amendments to the information in turn reconfigured their expectations. Second, utility and complexity in answering confirmed that the questions were relevant and comprehensible. Some participants perceived the answer options as limiting and suggested additional space for free text. Third, capturing needs and value of the tool highlighted the tool's potential to identify health problems and the importance of encouraging further dialog. The resulting digital tool, Strokehälsa [Strokehealth] version 1.0, is now incorporated into a national health platform. CONCLUSIONS: The participatory approach to tool development yielded a previsit digital tool that the study group perceived as useful. The holistic development process used here, which integrated health information, validated questions, and digital functionality, offers an example that could be applicable in the context of other long-term conditions. Beyond its potential to identify care needs, the tool offers information that confirms experiences and supports answering the questions in the tool. The tool is freely shared for adaptation in different contexts. TRIAL REGISTRATION: researchweb 236341; https://www.researchweb.org/is/vgr/project/236341.

Stroke-related health problems and associated actions identified with the post-stroke checklist among nursing home residents.

BACKGROUND: Little is known about the needs of permanent nursing home residents after a stroke; comprehensive descriptions of needs are rare. The Post-Stroke Checklist facilitates the identification of health problems. The study aimed to use the Post-Stroke Checklist to identify the extent of health problems, and how they were addressed, in nursing home residents that experienced strokes in Sweden. We also investigated the feasibility of the Checklist in a nursing home context. METHODS: This is a cross-sectional explorative study. Twenty nursing homes in two regions of Sweden participated. We included residents that had experienced a stroke within approximately 3 years and the responsible staff members were approached. Questionnaires were completed during face-to-face meetings with staff members (n = 45) knowledgeable about the residents. Data collection included the Post-Stroke Checklist, Barthel Index, modified Rankin Scale, resident and staff characteristics, and a satisfaction-questionnaire completed by staff. RESULTS: At the included nursing homes 1061 residents, 22% (n = 239) had a history of stroke, and 6% (n = 65) had experienced strokes during the last 3.5 years. Forty-nine residents were included (41% men, median age, 86 years, range 59-97). Among the health problems identified with the Checklist, activities of daily living (82%) were most common, and spasticity (41%) and pain (29%) were least common. Residents had extensive care needs, with a median of six health problems per resident. The total number of health problems addressed by previous actions i.e., referrals, as suggested in the Checklist, was 124, when recalled by staff. The median Barthel index score was 35. Lack of follow-up after stroke (e.g., by using a checklist) was reported in 17/20 nursing homes. The staff were satisfied with the Post-Stroke Checklist. CONCLUSIONS: We found that more than 1/5 of residents had experienced a stroke; thus, the Post-Stroke Checklist was a useful tool in nursing homes. Half of the residents had more than six health problems, identified with the Post-Stroke Checklist. Extensive needs, combined with a lack of follow-up, indicated a risk of insufficient care. These findings suggested that nursing home routines could be improved with the Post-Stroke Checklist. Trial registration The project is registered in Research web, project number: 256021.

Virtual reality gaming in rehabilitation after stroke - user experiences and perceptions.

PURPOSE: The present study explored participants' experiences with and perceptions of using fully immersive head-mounted virtual reality (VR) gaming as rehabilitation after stroke. METHODS: Four men and three women (median age 64 years) with chronic stroke and varying motor impairment (mild to severe) were interviewed after 10 weeks of VR training on the commercial HTC Vive system, focusing on the upper extremities. Inductive qualitative thematic analysis was performed. RESULTS: The analysis revealed three main themes: playing the game, benefits and effects, and personalizing the game. Playing the game encompasses both the feeling of being immersed in the game and descriptions of the gaming being motivating and fun. Benefits and effects describe the participants' expectations of potential benefits, the importance of getting feed-back, and the impact in daily life. Personalizing the game includes finding the right game and level, and the participants' need for support to achieve full use of the training. CONCLUSIONS: Participants with chronic stroke described the fully immersive VR gaming intervention as a fun and motivating way to improve their functioning in everyday life. Qualitative studies are needed to explore how people with stroke perceive VR gaming when it is implemented in real clinical environments.Clinical implicationsVR gaming was perceived as a positive and motivating rehabilitation after stroke.Getting feedback and perceiving benefits are essential parts of VR rehabilitation.Commercial fully immersive VR-games might be an option for stroke rehabilitation when the game can be personalized and support is available.

Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study.

PURPOSE: The aim of this study was to explore the experiences, needs, and preferences regarding follow-up perceived by people with stroke and healthcare professionals. METHODS: This is a qualitative exploratory study using focus groups. Patients and healthcare professionals, participating in a clinical visit in primary care or specialised care, were purposively sampled. Data were analysed using a framework of analysis developed by Krueger. RESULTS: Focus groups were conducted with two patient groups (n = 10, range 45-78 years) and two multidisciplinary healthcare professional groups (n = 8, range 35-55 years). The overarching theme elucidates stroke as a long-term condition requiring complex follow-up. Three organisational themes and six subthemes were identified. People with stroke discovered feelings and changes after returning home. In daily life, problems and feelings of abandonment became evident. Participants expressed experiences of unequal access to health care services. Barriers for accessing appropriate treatment and support included difficulties in communicating one's needs and lack of coherent follow-up. Follow-up activities were well functioning in certain clinics but did not provide continuity over the long term. Participants made suggestions for a comprehensive, planned, and tailored follow-up to meet patient needs. CONCLUSION: Comprehensive long-term follow-up that is accessible to all patients is essential for equal support. Our findings raised awareness about problems discovered after returning home and the obstacles individuals face in communicating their needs. Structured follow-up, which is individually tailored, can empower patients.

Experiences using the poststroke checklist in Sweden with a focus on feasibility and relevance: a mixed-method design.

OBJECTIVE: The wide range of outcomes after stroke emphasises the need for comprehensive long-term follow-up. The aim was to evaluate how people with stroke and health professionals (HPs) perceive the use of the poststroke checklist (PSC), with a focus on feasibility and relevance. DESIGN: An exploratory design with a mix of qualitative and quantitative methods. SETTING: Outpatient care at a university hospital and primary care centres in western Sweden. PARTICIPANTS: Forty-six consecutive patients (median age, 70; range, 41-85; 13 women) and 10 health professionals (median age 46; range, 35-63; 7 women). RESULTS: Most patients (87%) had one or more problems identified by the PSC. The most common problem areas were life after stroke (61%), cognition (56%), mood (41%) and activities of daily living (39%). Three organisational themes emerged from the focus group discussions. The perception of the content and relevance of the PSC was that common poststroke problems were covered but that unmet needs still could be missed. Identifying needs was facilitated when using the PSC as a tool for dialogue. The dialogue between the patient and HP as well as HPs stroke expertise was perceived as important. The PSC was seen as a systematic routine and a base for egalitarian follow-up, but participants stressed consideration given to each individual. Addressing identified needs and meeting patient expectations were described as challenging given available healthcare services. CONCLUSIONS: The PSC is a feasible and relevant tool to support egalitarian follow-up and identify patients who could benefit from targeted poststroke interventions. Stroke expertise, room for dialogue and caring for identified needs emerged as important issues to consider when using the PSC. Nutrition, sexuality and fatigue were areas mentioned that might need to be addressed within the discussions. The PSC can facilitate patients in expressing their needs, enhancing their ability to participate in decision-making.