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Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants.

ABSTRACT: To describe the characteristics of participants of an online stroke forum, their reasons for posting in the forum and whether responses addressed users' needs.Descriptive analysis of the population of 2004-2011 archives of Talkstroke, the online forum of the Stroke Association, and comparison with patients admitted to hospital with stroke (Sentinel Stroke National Audit Programme, SSNAP). Thematic analysis of posts from a sample of 59 participants representative of age at stroke and sex.UK.Characteristics of participants: age, sex, survivor versus patient by third party, side of stroke (R, L), social class; (from the sample of 59 participants): level of disability, stroke type, classification of users' intents for writing a post in the forum, quantification of needs addressed by the forum, topics of discussion.2348 participants (957 stroke survivors, 1391 patients with stroke talked about by third party).Patients of both sexes and from a wide range of ages at stroke (0 to 95 years) and degrees of disability were represented in the forum, although younger than the UK stroke population (mean age 52 years vs 77 years in SSNAP). Analysis of 841 posts showed that the main users' intents for writing in the forum were requests/offers of information and support (58%) and sharing own experiences of stroke (35%). Most information needs were around stroke-related physical impairments, understanding the cause of stroke and the potential for recovery. Up to 95% of the users' intents were met by the replies received.Patients' needs expressed in the online forum confirm and widen the evidence from traditional research studies, showing that such forums are a potential resource for studying needs in this population. The forum provided an opportunity for patients and families to give and receive advice and social support.

SUBMITTER: De Simoni A

PROVIDER: S-EPMC4823439 | biostudies-other | 2016 Apr

REPOSITORIES: biostudies-other

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Project description:ObjectiveTo understand poststroke fatigue from the perspective of stroke survivors and caregivers expressed in an online discussion forum.DesignThe search terms 'tiredness', 'fatigue', 'tired', 'weary' and 'weariness' were used to identify relevant posts. Thematic analysis performed by two independent researchers who coded all forum posts and identified pertinent themes. Posts were coded in relation to two research questions: (1) how is poststroke fatigue described? and (2) what coping strategies are suggested to target poststroke fatigue? Each theme was then summarised by a lead quotation in forum users' own words.SettingUK-based web forum hosted by Stroke Association, TalkStroke. Archives from 2004 to 2011 were accessed.Participants65 stroke survivors and caregivers (mean age 54 years, 61% female) contributed to 89 relevant posts that included a relevant search term. This included 38 stroke survivors, 23 individuals with family or carer role and 4 others unidentified.ResultsSix themes were generated: (1) medicalisation of poststroke fatigue: 'a classic poststroke symptom', (2) a tiredness unique to stroke: 'a legacy of stroke', (3) normalisation and acceptance of poststroke fatigue: 'part and parcel of stroke', (4) fighting the fatigue: 'an unwelcome guest', (5) survivors' and caregivers' biological explanations: 'the brain healing' and (6) coping mechanisms: 'pace yourself'. Forum users also repeatedly commented that poststroke fatigue was 'not understood by the profession'.ConclusionThis is the first study to employ data from an online forum to characterise poststroke fatigue. Our data are considered naturalistic owing to the absence of a researcher guiding the discussion and thus generates useful insights for healthcare professionals. Findings suggest a requirement for consistent understanding and explanation to be provided by healthcare professionals. The beliefs outlined here highlight the gap between clinical and community knowledge. Further research to translate understanding of patient and carer perspective into improved management of poststroke fatigue is required.

Project description:ObjectiveTo identify barriers and facilitators of medication adherence in patients with stroke along with their caregivers.DesignQualitative thematic analysis of posts about secondary prevention medications, informed by Perceptions and Practicalities Approach.SettingPosts written by the UK stroke survivors and their family members taking part in the online forum of the Stroke Association, between 2004 and 2011.Participants84 participants: 49 stroke survivors, 33 caregivers, 2 not stated, identified using the keywords 'taking medication', 'pills', 'size', 'side-effects', 'routine', 'blister' as well as secondary prevention medication terms.ResultsPerceptions reducing the motivation to adhere included dealing with medication side effects, questioning doctors' prescribing practices and negative publicity about medications, especially in regard to statins. Caregivers faced difficulties with ensuring medications were taken while respecting the patient's decisions not to take tablets. They struggled in their role as advocates of patient's needs with healthcare professionals. Not experiencing side effects, attributing importance to medications, positive personal experiences of taking tablets and obtaining modification of treatment to manage side effects were facilitators of adherence. Key practical barriers included difficulties with swallowing tablets, dealing with the burden of treatment and drug cost. Using medication storage devices, following routines and getting help with medications from caregivers were important facilitators of adherence.ConclusionsAn online stroke forum is a novel and valuable resource to investigate use of secondary prevention medications. Analysis of this forum highlighted significant barriers and facilitators of medication adherence faced by stroke survivors and their caregivers. Addressing perceptual and practical barriers highlighted here can inform the development of future interventions aimed at improving adherence to secondary prevention medication after stroke.

Project description:BACKGROUND:Over the past 2 decades, online forums for mental health support have emerged as an important tool for improving mental health and well-being. There has been important research that analyzes the content of forum posts, studies on how and why individuals engage with forums, and how extensively forums are used. However, we still lack insights into key questions on how they are experienced from the perspective of their users, especially those in rural and remote settings. OBJECTIVE:The aim of our study was to investigate the dynamics, benefits, and challenges of a generalized peer-to-peer mental health online forum from a user perspective; in particular, to better explore and understand user perspectives on connection, engagement, and support offered in such forums; information and advice they gained; and what issues they encountered. We studied experiences of the forums from the perspective of both people with lived experience of mental illness and people who care for people with mental illness. METHODS:To understand the experience of forum users, we devised a qualitative study utilizing semistructured interviews with 17 participants (12 women and 5 men). Data were transcribed, and a thematic analysis was undertaken. RESULTS:The study identified 3 key themes: participants experienced considerable social and geographical isolation, which the forums helped to address; participants sought out the forums to find a social connection that was lacking in their everyday lives; and participants used the forums to both find and provide information and practical advice. CONCLUSIONS:The study suggests that online peer support provides a critical, ongoing role in providing social connection for people with a lived experience of mental ill-health and their carers, especially for those living in rural and remote areas. Forums may offer a way for individuals to develop their own understanding of recovery through reflecting on the recovery experiences and peer support shown by others and individuals enacting peer support themselves. Key to the success of this online forum was the availability of appropriate moderation, professional support, and advice.

Project description:BACKGROUND:The COVID-19 global pandemic has impacted the whole of society, requiring rapid implementation of individual-, population-, and system-level public health responses to contain and reduce the spread of infection. Women in the perinatal period (pregnant, birthing, and postpartum) have unique and timely needs for directives on health, safety, and risk aversion during periods of isolation and physical distancing for themselves, their child or children, and other family members. In addition, they are a vulnerable group at increased risk of psychological distress that may be exacerbated in the context of social support deprivation and a high-risk external environment. OBJECTIVE:The aim of this study is to examine the public discourse of a perinatal cohort to understand unmet health information and support needs, and the impacts on mothering identity and social dynamics in the context of COVID-19. METHODS:A leading Australian online support forum for women pre- through to postbirth was used to interrogate all posts related to COVID-19 from January 27 to May 12, 2020, inclusive. Key search terms included "COVID," "corona," and "pandemic." A three-phase analysis was conducted, including thematic analysis, sentiment analysis, and word frequency calculations. RESULTS:The search yielded 960 posts, of which 831 were included in our analysis. The qualitative thematic analysis demonstrated reasonable understanding, interpretation, and application of relevant restrictions in place, with five emerging themes identified. These were (1) heightened distress related to a high-risk external environment; (2) despair and anticipatory grief due to deprivation of social and family support, and bonding rituals; (3) altered family and support relationships; (4) guilt-tampered happiness; and (5) family future postponed. Sentiment analysis revealed that the content was predominantly negative (very negative: n=537 and moderately negative: n=443 compared to very positive: n=236 and moderately positive: n=340). Negative words were frequently used in the 831 posts with associated derivatives including "worried" (n=165, 19.9%), "risk" (n=143, 17.2%), "anxiety" (n=98, 11.8%), "concerns" (n=74, 8.8%), and "stress" (n=69, 8.3%). CONCLUSIONS:Women in the perinatal period are uniquely impacted by the current pandemic. General information on COVID-19 safe behaviors did not meet the particular needs of this cohort. The lack of nuanced and timely information may exacerbate the risk of psychological and psychosocial distress in this vulnerable, high-risk group. State and federal public health departments need to provide a central repository of information that is targeted, consistent, accessible, timely, and reassuring. Compensatory social and emotional support should be considered, using alternative measures to mitigate the risk of mental health disorders in this cohort.

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Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants.

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