stroke support groups
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2021 ◽  
Vol 3 ◽  
pp. 93
Author(s):  
Mairéad O' Donoghue ◽  
Pauline Boland ◽  
Siobhan Leahy ◽  
Rose Galvin ◽  
Sara Hayes

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.


2021 ◽  
Vol 2021 ◽  
pp. 1-8
Author(s):  
Amy Ho ◽  
Marjorie L. Nicholas ◽  
Chaitali Dagli ◽  
Lisa Tabor Connor

Importance. Individuals with chronic stroke experience decreased participation in activities with cognitive demands across all areas of occupation. Objective. To understand the extent to which apathy, cognition, and social support predict participation in activities with cognitive demands. Design. Prospective, quantitative correlational, cross-sectional study. Setting. Outpatient treatment centers and community stroke support groups located in St. Louis, MO, and Boston, MA. Participants. 81 community-dwelling individuals ≥ 6 -month poststroke with and without aphasia. Measures. Participants completed the Activity Card Sort (ACS), Apathy Evaluation Scale (AES), Medical Outcomes Study Social Support Survey (MOS-SSS), and Delis-Kaplan Executive Function System (DKEFS) Design Fluency and Trail-Making subtests. Results. Cognitive deficits limit participation in activities with high cognitive demands. Apathy and positive social interaction influence participation, regardless of high or low cognitive demands. Poststroke aphasia did not impact return to participation in activities with high and low cognitive demands. Conclusions and Relevance. Cognitive deficits seen poststroke contribute to participation only for activities with high cognitive demands. Apathy has a significant and negative influence on participation overall. Social support is a modifiable contextual factor that can facilitate participation. Poststroke apathy can be detrimental to participation but is not well recognized. The availability of companionship from others to enjoy time with can facilitate participation.


Stroke ◽  
2021 ◽  
Vol 52 (Suppl_1) ◽  
Author(s):  
Adrienne Veenstra ◽  
Jamie DuVerneay ◽  
Laurel Packard ◽  
Muhib Khan

Background and Purpose: Post-stroke patients and their caregivers need continued physical and emotional support to adapt to the ‘new normal’. Stroke Support Groups are an effective educational platform for survivors and caregivers to discuss chronic post stroke issues. Stay at home orders and social distancing measures instituted to decrease the spread of COVID-19 made it difficult to conduct an in-person stroke support group. However, social isolation related to home quarantine would exacerbate the emotional toll associated with stroke. Therefore, we decided to proceed with a virtual stroke support group to provide continued education and emotional support to our stroke survivors and caregivers. Methods: Microsoft Teams Virtual Platform was utilized to conduct virtual stroke support group. Sessions were conducted once a month. Stroke Survivors and Caregivers were sent a link to their email to log into the virtual platform. The sessions were moderated by a recreational therapist and various speakers provided educational sessions. Results: Five virtual stroke support group sessions have been conducted. Topics discussed were COVID-19 check-in and discussion, Planning for an Uncertain Future, Brilliant Brain Party: Celebrating Neuroplasticity, Two Sides to Every Story: Left and Right Brain and How Humor Can Help Your Recovery. An average of 10 participants attend each of these sessions. Participants find these sessions valuable. It allows them to be part of the stroke community when they are unable to travel due to long distance, inclement weather and transportation availability. Challenges include lack of experience with technology, familiarity with conference call etiquettes and lack of visual cues related to emotional topics. Conclusion: Virtual Stroke Support Group is an innovative approach to keep stroke survivors and caregivers engaged in their care. We plan to have the option of virtual attendance available long term in addition to in-person attendance in the future.


2020 ◽  
Vol 3 ◽  
pp. 93
Author(s):  
Mairéad O' Donoghue ◽  
Pauline Boland ◽  
Siobhan Leahy ◽  
Rose Galvin ◽  
Sara Hayes

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.


Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Imama A Naqvi ◽  
Tina A Varughese ◽  
Andrea Ancer Leal ◽  
Yazan Bittar ◽  
Norma Hunter ◽  
...  

Background and Purpose: Web-based interventions have shown promise as a cost-effective and convenient delivery platform for supporting chronic disease self-management. However, studies suggest that web-based interventions are not widely available. The purpose of this study was to describe access and usage of web-based electronics in a cohort of stroke survivors (SS) and their informal caregivers (IC). Methods: A 14-question electronic usage survey was created with input from experts in neurology, nursing and bioinformatics. Two urban sites recruited participants from inpatient stroke centers, outpatient stroke clinics and stroke support groups. Surveys were completed in person or via telephone. Descriptive data were generated to evaluate internet access and usage. Results: Data were analyzed from 251 SS and 127 IC. Participants were primarily recruited from outpatient settings, with inpatient recruits constituting 15%. Internet users were on average 8 years younger than non-users in both groups. African Americans constituted a third in each group and 1 out of 8 were Hispanic. Compared to an estimate that 89% of American adults have internet access, 200 (81%) SS (p < .001) and 123 (97%) IC (p = .005) had internet access. Conclusions: In our diverse cohort of relatively young SS, we found IC had more internet access than SS, and more so than the general population. This study is an important step towards delineating the potential use of web-based environments as a platform for interventions to improve stroke risk factor management and stroke recovery.


Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Suzanne Hoi Shan Lo ◽  
Janita Pak Chun Chau

Background and Purpose: Studies have reported that young stroke survivors often encountered challenges in supporting themselves or their family financially and socially. One of their priorities in rehabilitation was returning to work. The purpose of this study was to explore young adults’ experiences of returning to work after stroke. Methods: A qualitative study with face-to-face semi-structured interviews and non-participant observation was conducted. Community-dwelling adults who had a first-ever or recurrent ischaemic or haemorrhagic stroke at an age between 18 and 64 years were recruited from the community organisations or stroke support groups. All participants were asked to share their experiences of, and perceived barriers to and facilitators of returning to work after stroke. Non-participant observation for one day about the participants’ daily work was conducted. The interviews were recorded and transcribed verbatim for thematic analysis. The field notes obtained from observation was categorised to explain the interview data. Results: A total of 19 participants (mean age 58.6 years, SD 8.63) were interviewed. Five key themes were generated: (1) Capability to return to work was integral as it defined their identity and existence in the society, (2) Support from family members, colleagues and employers were key factors to their successful experience of returning to work, (3) Learning to learn new skills to assume pre-stroke or new work roles was difficult but integral to adapt to their physical and psychosocial challenges, (4) Age-appropriate services to support young stroke survivors to pursue employment opportunities was inadequate, and (5) Engagement in household works or valued everyday activities would be feasible to build social or work skills and motivation to prepare them for returning to work. Conclusions: The findings supported that the young stroke survivors had a strong need for returning to work to unleash their potentials and continue their contributions to the society. More age-appropriate services are needed to enhance their capability to learn new skills to assume their pre-stroke or new employment opportunities.


2019 ◽  
Vol 2 ◽  
pp. 9
Author(s):  
Daniel D. Carter ◽  
Katie Robinson ◽  
John Forbes ◽  
Jane C. Walsh ◽  
Sara Hayes

Background: Physical inactivity is both the second-highest population attributable risk factor for and a common consequence of stroke. Despite well-documented health benefits associated with physical activity, its levels typically remain below recommended guidelines in stroke survivors. Consequently, calls have been made for novel interventions targeting the promotion of physical activity in stroke survivors. Mobile health is an emerging field which can offer personalised health interventions through mobile and wireless technology. However, a paucity of research has focused on mobile health to promote physical activity in stroke survivors and, more broadly, this field has been criticised for not incorporating the views of stakeholders. This study aims to explore the perspectives of stroke survivors and healthcare professionals on the development of a mobile health intervention for the promotion of physical activity. Methods: The current study will employ a qualitative descriptive approach using separate, semi-structured focus groups for two key stakeholder groups. Community-dwelling stroke survivors will be recruited through an early supported discharge service for acute stroke and stroke support groups. Healthcare professionals will be recruited through the same early supported discharge service, relevant professional bodies and Twitter. The final number of focus groups will depend on data saturation. Thematic analysis will be conducted using NVivo 12 and findings will be reported in accordance with the Consolidated Criteria for Reporting Qualitative Studies. Conclusion: This study was granted ethical approval from the HSE Mid-Western Regional Hospital Research Ethics Committee and the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Output will consist of recommendations for the development of a mobile health intervention aimed at the promotion of physical activity in stroke survivors. Findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.


2018 ◽  
Vol 6 (4) ◽  
pp. 271-277 ◽  
Author(s):  
Robyn Maddern ◽  
Ian I Kneebone

Background: Breaking bad news to patients may be required in service provision to stroke survivors. While challenging, it may be critical to the retention of optimism and participation in rehabilitation. Objectives: To explore the experience of stroke survivors when receiving bad news (RBN) from medical practitioners. Methods: Data were obtained via 1:1 interviews conducted at stroke support groups with survivors at least 12 months into recovery and subsequently transcribed for thematic analysis and coded using NVivo. Results: Eight of 10 participants experienced RBN, and 2 participants did not. The themes of being “lucky to be alive” and waiting for “delayed information” were expressed by all participants early in the interviews. Three sub-themes emerged and were labelled alliance, dissent, and dissatisfaction, each with a further 3 contextual themes. The perception of RBN was marked amongst the dissent and dissatisfaction groups, with the latter reporting negative implications for their rehabilitation as well as negative emotions, such as anger and anxiety. The perception of a poor-quality relationship with medical practitioners was said to impede rehabilitation and recovery processes. The dissent group was characterized by initial disbelief after RBN and consequently poorer long-term outcomes, whilst the Alliance group experienced very good quality of care due to existing personal knowledge and therefore did not perceive RBN during their early medical meetings. Conclusions: In the period soon after their stroke, survivors required their medical practitioners to not only communicate knowledge and information, but also needed validation of their hopes and fears for the future from an empathically attuned clinician.


2018 ◽  
Vol 10 (12) ◽  
pp. e33-e33 ◽  
Author(s):  
Jacob J Bundy ◽  
Jeffrey Forris Beecham Chick ◽  
Anthony N Hage ◽  
Ravi N Srinivasa ◽  
Neeraj Chaudhary ◽  
...  

PurposeTo describe the stroke-related Twitter network through analysis of the #Stroke hashtag.Materials and methods621 653 tweets containing the #Stroke hashtag were analyzed from 20 March 2012 to 31 January 2018. Twitter activity metrics, engagement, user characteristics, content analysis, and network analysis were obtained using the healthcare social media analytics platform, Symplur Signals.ResultsThe number of users, the number of impressions, and the number of tweets containing the #Stroke hashtag increased by an annual average of 64.9%, 87.7%, and 89.2% over the past 6 years from 20 March 2012 to 31January 2018. 69 371 tweets (11.2%) contained novel content and 48 568 tweets (7.8%) related to patient care. 181 120 (29.1%) tweets contained at least one image and 436 132 tweets (70.2%) contained links to outside resources. Stroke prevention, diabetes, and atrial fibrillation were commonly discussed topics. With regard to engagement, there were 259 438 retweets (41.7%), 366 561 mentions (59.0%), and 8549 replies (1.4%). Physicians and patients authored 52 197 (8.4%) and 41 822 (6.7%) tweets, respectively. Advocate organizations, patients, and non-healthcare individuals most frequently used the #Stroke hashtag on Twitter.ConclusionThe use of the #Stroke hashtag on Twitter has grown significantly over the 6-year study period. The majority of the discussions were held between stroke support groups and non-healthcare-related individuals, with discussion content centering around stroke prevention, stroke symptoms, associated medical conditions, and treatment options.


Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
Jonathan Muller ◽  
Barbara Gatton ◽  
Linda Fox ◽  
Joseph A Bove ◽  
Johanna Donovan Turner ◽  
...  

Background and Purpose: At least 12% of stroke patients are readmitted to a hospital within 30 days of discharge. We know that patients hospitalized for other conditions are less likely to be readmitted within 30 days if they are seen by their PCP shortly after discharge. However, less than a third of patients in the New York metropolitan area admitted for heart failure, heart attacks, and pneumonia see their PCP within 14 days after discharge and nearly 40% of patients do not adhere to their prescribed regimen. In the case of cerebrovascular diseases, outpatient follow-up may prevent the majority of avoidable readmissions. The purpose of this project is to identify and reduce unnecessary, unplanned hospital readmissions after stroke. Our goal is to encourage patient adherence to prescribed medication and other therapies, as well as to ensure timely follow-up with their PCP. Methods: Stroke and transient ischemic attack (TIA) patients with a disposition of either home or short-term rehabilitation are visited and offered enrollment. Participants are given a kit which includes a personalized binder (to manage essential medical information) and a 28-slot pill box. Each patient then receives 3 phone call interviews at 7, 21 and 32 days after discharge. The aim of the phone calls is to identify obstacles to compliance with treatment regimen and follow-up care. Results: From January 2015 to June 2016, 247 patients were enrolled and followed up. Within 30 days of discharge, 10% were readmitted and 50% of all readmissions occurred within the first 7 days. Of those readmitted, 19% were due to an injury from physical therapy. Data from follow-up phone calls revealed that 83% were taking all prescribed medications, 89% had completed a follow-up with any physician, 69% were using the binder, and 61% had done all three. Conclusions: While we have not enrolled enough patients to see a statistically significant reduction in readmissions, our interviews showed that weather, depression, as well as a lack of insurance, family support, and a home health aide are all determinants on how patients will follow their prescribed regimen. The results of this study have allowed us to begin implementing stroke support groups and pre-discharge follow-up appointment scheduling.


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