69 research outputs found
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Information needs after stroke: What to include and how to structure it on a website. A qualitative study using focus groups and card sorting
Background: Use of the Internet to obtain health and other information is increasing. Previous studies have identified the specific information needs of people with stroke but not in relation to the Internet. People with aphasia (PwA) may face barriers in accessing the Internet: Navigating websites requires an ability to categorise information and this ability is often impaired in PwA. The website categorisation preferences of people with stroke and with aphasia have not yet been reported.
Aims: This study aimed: (a) to determine what information people who have had a stroke would like to see on a website about living with stroke; (b) to determine the most effective means of structuring information on the website so that it is accessible to people with stroke; and c) to identify any differences between people with and without aphasia in terms of preferences for structuring information on the website.
Methods & Procedures: Participants were recruited from a hospital's Stroke Database. Focus groups were used to elicit what information participants wanted on a website about living with stroke. The themes raised were depicted on 133 cards. To determine the most effective way of structuring information on the website, and whether there were any differences in preferences between PwA and PwoA, participants used a modified closed card-sorting technique to sort the cards under website categories.
Outcomes & Results: A total of 48 people were invited, and 12 (25%) agreed to take part. We ran three focus groups: one with PwA (n = 5) and two with people without aphasia (PwoA) (n = 3, n = 4). Participants wanted more information about stroke causes and effects (particularly emotional issues), roles of local agencies, and returning to previous activities (driving, going out). All participants completed the card-sorting exercise. Few cards (6%) were categorised identically by everyone. Cards relating to local agencies and groups were not consistently categorised together. Cards relating to emotions were segregated. The categorisation preferences for PwA were more fragmented than those for PwoA: 60% of PwA agreed on the categorisation of 51% of the cards, whereas 60% of PwoA agreed on the categorisation of 76% of the cards.
Conclusions: Information needs covered all stages of the stroke journey. The card sorting was accessible to everyone, and provided evidence of structuring preferences and of some of the categorisation difficulties faced by PwA. More research is needed on what an accessible website looks like for PwA
Towards an asset-based approach to promoting and sustaining well-being for people with aphasia and their families: an international exploratory study
Background: There is growing interest in interventions that promote positive outcomes and well-being for people with aphasia (PWA) and their families, but provision is inconsistent. An asset-based approach, based on the theory of salutogenesis, focuses on what makes you well rather than ill. This approach has been used successfully across a variety of research fields, including health and social care research and practice, and has the potential to provide coherent strategies to support people living successfully with aphasia. Aim: To explore the relevance and potential of an asset-based approach to promoting and sustaining well-being for PWA and their families, across contexts and cultures. Methods & procedures: Exploratory case studies were carried out in the United Kingdom (UK), Norway, Israel, Ireland, and Denmark in a variety of settings. Following an interpretative paradigm, we used qualitative methods including: interviews; appreciative inquiry; group discussions; and participatory action research. 95 PWA and 25 family members were asked to identify assets within themselves and their communities that promote, sustain and maintain well-being, by responding to: “What makes you feel good/well/healthy?” Data were analysed using thematic analysis. Outcomes & results: An asset-based approach proved to be a powerful means for PWA and family members to explore what helps them live well with aphasia. Key themes were identified: (1) personal journey; (2) helping others; (3) connecting to self; (4) connecting to others; (5) recreation; and (6) personal attributes. Self-identification of assets, within the person and their community, and connections to these, helped PWA and their family members to maintain well-being, overcome barriers and regain confidence. Using this approach, focusing on the person’s recognition, activation and mobilisation of assets, could enhance the person’s understanding and restore meaning around the stroke and onset of aphasia. Conclusion: This novel exploratory research demonstrates the relevance and potential across diverse cultural contexts of taking an asset-based approach to promoting and sustaining well-being for PWA and their families. Focusing on maintaining connections to these assets and developing meaning around the event, could prevent some of the negative sequela of stroke. The “patient–professional” relationship must transform into a collaborative partnership, with time and flexibility needed to introduce this approach. Further research should examine how service providers and PWA could develop and operationalise an asset-based approach in clinical and community settings and identify if there is an optimum timing for introducing this approach along the stroke pathway
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Evaluating the Benefits of Aphasia Intervention Delivered in Virtual Reality: Results of a Quasi-Randomised Study
Introduction
This study evaluated an intervention for people with aphasia delivered in a novel virtual reality platform called EVA Park. EVA Park contains a number of functional and fantastic locations and allows for interactive communication between multiple users. Twenty people with aphasia had 5 weeks’ intervention, during which they received daily language stimulation sessions in EVA Park from a support worker. The study employed a quasi randomised design, which compared a group that received immediate intervention with a waitlist control group. Outcome measures explored the effects of intervention on communication and language skills, communicative confidence and feelings of social isolation. Compliance with the intervention was also explored through attrition and usage data.
Results
There was excellent compliance with the intervention, with no participants lost to follow up and most (18/20) receiving at least 88% of the intended treatment dose. Intervention brought about significant gains on a measure of functional communication. Gains were achieved by both groups of participants, once intervention was received, and were well maintained. Changes on the measures of communicative confidence and feelings of social isolation were not achieved. Results are discussed with reference to previous aphasia therapy findings
Sympathetic activity and functional masking of brown adipose tissue uncoupling protein
International audienc
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