Utilization of social media communities for caregiver information support in stroke recovery: An analysis of content and interactions.
Ontology highlight
ABSTRACT: Background
Caregivers often use the internet to access information related to stroke care to improve preparedness, thereby reducing uncertainty and enhancing the quality of care.Method
Social media communities used by caregivers of people affected by stroke were identified using popular keywords searched for using Google. Communities were filtered based on their ability to provide support to caregivers. Data from the included communities were extracted and analysed to determine the content and level of interaction.Results
There was a significant rise in the use of social media by caregivers of people affected by stroke. The most popular social media communities were charitable and governmental organizations with the highest user interaction-this was for topics related to stroke prevention, signs and symptoms, and caregiver self-care delivered through video-based resources.Conclusion
Findings show the ability of social media to support stroke caregiver needs and practices that should be considered to increase their interaction and support.
SUBMITTER: Lobo EH
PROVIDER: S-EPMC8791510 | biostudies-literature | 2022
REPOSITORIES: biostudies-literature
Publications
Utilization of social media communities for caregiver information support in stroke recovery: An analysis of content and interactions.
Lobo Elton H EH Johnson Tara T Frølich Anne A Kensing Finn F Rasmussen Lene J LJ Hosking Sarah M SM Page Amy T AT Livingston Patricia M PM Islam Sheikh Mohammed Shariful SMS Grundy John J Abdelrazek Mohamed M
PloS one 20220126 1
<h4>Background</h4>Caregivers often use the internet to access information related to stroke care to improve preparedness, thereby reducing uncertainty and enhancing the quality of care.<h4>Method</h4>Social media communities used by caregivers of people affected by stroke were identified using popular keywords searched for using Google. Communities were filtered based on their ability to provide support to caregivers. Data from the included communities were extracted and analysed to determine t ...[more]
Similar Datasets
Project description:Background and purposeHaving a small social network and lack of social support have been associated with incident coronary heart disease; however, epidemiological evidence for incident stroke is limited. We assessed the longitudinal association of a small social network and lack of social support with risk of incident stroke and evaluated whether the association was partly mediated by vital exhaustion and inflammation.MethodsThe Atherosclerosis Risk in Communities study measured social network and social support in 13 686 men and women (mean, 57 years; 56% women; 24% black; 76% white) without a history of stroke. Social network was assessed by the 10-item Lubben Social Network Scale and social support by a 16-item Interpersonal Support Evaluation List-Short Form.ResultsDuring a median follow-up of 18.6 years, 905 incident strokes occurred. Relative to participants with a large social network, those with a small social network had a higher risk of stroke (hazard ratio [95% confidence interval], 1.44 [1.02-2.04]) after adjustment for demographics, socioeconomic variables, marital status, behavioral risk factors, and major stroke risk factors. Vital exhaustion, but not inflammation, partly mediated the association between a small social network and incident stroke. Social support was unrelated to incident stroke.ConclusionsIn this sample of US community-dwelling men and women, having a small social network was associated with excess risk of incident stroke. As with other cardiovascular conditions, having a small social network may be associated with a modestly increased risk of incident stroke.
| S-EPMC4201236 | biostudies-literature
Project description:BackgroundPatient and public involvement in health research is important to produce relevant and impactful results.ObjectiveThis paper aimed to prioritize and summarize Hirschsprung disease (HD)-related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign.MethodsWe conducted a Web-based survey with the 2 stakeholder groups to identify information needs. The caregiver survey was conducted through a global Web-based community, and the surgeon survey was distributed to members of the Canadian Association of Paediatric Surgeons (CAPS). We conducted a literature review to identify evidence on the prioritized topics.ResultsOur findings showed that 54.9% (89/162) of the individuals completed the caregiver survey and 23.8% (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20% (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none.ConclusionsWith caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders.
| S-EPMC6320415 | biostudies-literature
Project description:Establishing evidence of content validity and satisfaction is an integral part of intervention research. The purpose of this article is to describe content validity and satisfaction relative to the Telephone Assessment and Skill-Building Kit (TASK), an 8-week follow-up program based on individualized assessment of stroke caregiver needs.The TASK intervention enables caregivers to develop skills based on assessment of their own needs. During the development of the TASK program, 10 experts rated the validity of the TASK intervention components for accuracy, feasibility, acceptability, and problem relevance. After incorporating feedback from the experts, a randomized controlled clinical trial was instituted using a convenience sample of 40 stroke caregivers to determine satisfaction (usefulness, ease of use, and acceptability) with the TASK intervention (n=21) compared with an attention control group (n=19). Data collection occurred between March 2005 and June 2006. Data were analyzed using descriptive statistics, independent sample t tests, and content analysis.Expert ratings on a 1 to 5 scale, with 5 being strongly agree, provided evidence of content validity (accuracy 4.71, feasibility 4.46, acceptability 4.40, problem relevance 4.67). Caregivers in the TASK group scored significantly higher than the attention control group on all satisfaction measures (usefulness p=.02; ease of use p=.02; acceptability p=.05). Qualitative comments from caregivers provided further evidence of satisfaction.Evidence of content validity and user satisfaction for the TASK intervention relative to an attention control group was found.The TASK program may be a viable telephone-based program that can be implemented by nurses to support family caregivers during the first few months after stroke survivors are discharged home.
| S-EPMC5546610 | biostudies-other
Project description:Online communities can promote illness recovery and improve well-being in the cases of many kinds of illnesses. However, for challenging mental health condition like anorexia, social media harbor both recovery communities as well as those that encourage dangerous behaviors. The effectiveness of such platforms in promoting recovery despite housing both communities is underexplored. Our work begins to fill this gap by developing a statistical framework using survival analysis and situating our results within the cognitive behavioral theory of anorexia. This model identifies content and participation measures that predict the likelihood of recovery. From our dataset of over 68M posts and 10K users that self-identify with anorexia, we find that recovery on Tumblr is protracted - only half of the population is estimated to exhibit signs of recovery after four years. We discuss the effectiveness of social media in improving well-being around anorexia, a unique health challenge, and emergent questions from this line of work.
| S-EPMC5565731 | biostudies-other
Project description:BackgroundIt is essential to study post-stroke healthcare utilization trajectories from a stroke patient caregiver dyadic perspective to improve healthcare delivery, practices and eventually improve long-term outcomes for stroke patients. However, literature addressing this area is currently limited. Addressing this gap, our study described the trajectory of healthcare service utilization by stroke patients and associated costs over 1-year post-stroke and examined the association with caregiver identity and clinical stroke factors.MethodsPatient and caregiver variables were obtained from a prospective cohort, while healthcare data was obtained from the national claims database. Generalized estimating equation approach was used to get the population average estimates of healthcare utilization and cost trend across 4 quarters post-stroke.ResultsFive hundred ninety-two stroke patient and caregiver dyads were available for current analysis. The highest utilization occurred in the first quarter post-stroke across all service types and decreased with time. The incidence rate ratio (IRR) of hospitalization decreased by 51, 40, 11 and 1% for patients having spouse, sibling, child and others as caregivers respectively when compared with not having a caregiver (p?=?0.017). Disability level modified the specialist outpatient clinic usage trajectory with increasing difference between mildly and severely disabled sub-groups across quarters. Stroke type and severity modified the primary care cost trajectory with expected cost estimates differing across second to fourth quarters for moderately-severe ischemic (IRR: 1.67, 1.74, 1.64; p?=?0.003), moderately-severe non-ischemic (IRR: 1.61, 3.15, 2.44; p?=?0.001) and severe non-ischemic (IRR: 2.18, 4.92, 4.77; p?=?0.032) subgroups respectively, compared to first quarter.ConclusionHighlighting the quarterly variations, we reported distinct utilization trajectories across subgroups based on clinical characteristics. Caregiver availability reducing hospitalization supports revisiting caregiver's role as potential hidden workforce, incentivizing their efforts by designing socially inclusive bundled payment models for post-acute stroke care and adopting family-centered clinical care practices.
| S-EPMC6251229 | biostudies-literature
Project description:Policymakers and community organizations have implemented numerous programs and services to support the more than 40 million family caregivers in the United States. However, the existence of such services is not sufficient to ensure equitable and optimal access and utilization. Using data from the Caregiving in the US study (2015; n = 1,185), we estimated that nearly one in five family caregivers do not meet broad eligibility criteria for support services. This resource gap was particularly likely to affect high-priority populations such as those caring for someone with a mental health problem. Furthermore, ineligible caregivers had lower service utilization and increased financial strain. The findings highlight a pattern of vulnerability among caregivers who do not meet broad eligibility criteria for financial support resources. Careful policy consideration is needed to determine how support services should be allocated to maximize caregiver and care recipient outcomes at the population level.
| S-EPMC8099921 | biostudies-literature
Project description:BACKGROUND:Respecting patient privacy and confidentiality is critical for doctor-patient relationships and public trust in medical professionals. The frequency of potentially identifiable disclosures online during periods of active engagement is unknown. OBJECTIVE:The objective of this study was to quantify potentially identifiable content shared on social media by physicians and other health care providers using the hashtag #ShareAStoryInOneTweet. METHODS:We accessed and searched Twitter's API using Symplur software for tweets that included the hashtag #ShareAStoryInOneTweet. We identified 1206 tweets by doctors, nurses, and other health professionals out of 43,374 tweets shared in May 2018. Tweet content was evaluated in January 2019 to determine the incidence of instances where names or potentially identifiable information about patients were shared; content analysis of tweets in which information about others had been disclosed was performed. The study also evaluated whether participants raised concerns about privacy breaches and estimated the frequency of deleted tweets. The study used dual, blinded coding for a 10% sample to estimate intercoder reliability using Cohen ? statistic for identifying the potential identifiability of tweet content. RESULTS:Health care professionals (n=656) disclosing information about others included 486 doctors (74.1%) and 98 nurses (14.9%). Health care professionals sharing stories about patient care disclosed the time frame in 95 tweets (95/754, 12.6%) and included patient names in 15 tweets (15/754, 2.0%). It is estimated that friends or families could likely identify the clinical scenario described in 242 of the 754 tweets (32.1%). Among 348 tweets about potentially living patients, it was estimated that 162 (46.6%) were likely identifiable by patients. Intercoder reliability in rating the potential identifiability demonstrated 86.8% agreement, with a Cohen ? of 0.8 suggesting substantial agreement. We also identified 78 out of 754 tweets (6.5%) that had been deleted on the website but were still viewable in the analytics software data set. CONCLUSIONS:During periods of active sharing online, nurses, physicians, and other health professionals may sometimes share more information than patients or families might expect. More study is needed to determine whether similar events arise frequently and to understand how to best ensure that patients' rights are adequately respected.
| S-EPMC7492977 | biostudies-literature
Project description:Background: Caregiver values and preferences with regard to oral immunotherapy (OIT) for treatment of food allergies are not widely reported. Understanding caregiver perspectives is integral to establishing shared decision-making in the treatment of food allergy. Objective: We aimed to understand caregiver opinions that may influence caregivers in their decisions about OIT through social media. Methods: We searched a popular parenting web site for posts related to OIT from December 2008 to September 2019. We applied a Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework to review posts for inclusion, performed thematic content analysis to determine common themes, and calculated frequencies for each theme and subtheme. Posts and comments were included if they contained discussions about OIT for immunoglobulin E-mediated food allergy and were excluded if they were duplicates, comments from an original post from the original user, or comments on a nonrelevant original post. Results: Of 1300 posts and comments retrieved, 174 were included (13%). Most were excluded because they did not directly address OIT for food allergy. Relevant posts could fall into multiple themes and were categorized under three main themes: attitudes (n = 128, "I am scared to do OIT but scared not to!"), logistics (n = 168, "We will be doing this once LO [little one] is a little older"), and questions (n = 32, "How does it work?"). Conclusion: Caregivers communicate with each other through social media, expressing attitudes, logistics, and questions about OIT. Understanding these lay perspectives may help guide clinicians in counseling and engage caregivers in decision-making.
| S-EPMC8677497 | biostudies-literature
Project description:BackgroundScientific studies from North America and Europe tend to predominate the internet and benefit English-speaking users. Meanwhile, the COVID-19 death rate was high at the onset of the pandemic in Spanish-speaking countries, and information about nearby Caribbean countries was rarely highlighted. Given the rise in social media use in these regions, the web-based dissemination of scientific information related to COVID-19 must be thoroughly examined.ObjectiveThis study aimed to provide a multidimensional analysis of peer-reviewed information circulation related to COVID-19 in Spanish-speaking and Caribbean regions.MethodsCOVID-19-related, peer-reviewed resources shared by web-based accounts located in Spanish-speaking and Caribbean regions were identified through the Altmetric website, and their information was collected. A multidimensional model was used to examine these resources, considering time, individuality, place, activity, and relations. Time was operationalized as the 6 dates of data collection, individuality as the knowledge area and accessibility level, place as the publication venue and affiliation countries, activity as the Altmetric score and number of mentions in the selected regions, and relations as coauthorship between countries and types of social media users who disseminated COVID-19-related information.ResultsThe highest information circulation peaks in Spanish-speaking countries were from April 2020 to August 2020 and from December 2020 to April 2021, whereas the highest peaks in Caribbean regions were from December 2019 to April 2020. Regarding Spanish-speaking regions, at the onset of the pandemic, scientific expertise was concentrated on a few peer-reviewed sources written in English. The top scientific journals mentioned were from English-speaking, westernized regions, whereas the top scientific authorships were from China. The most mentioned scientific resources were about breakthrough findings in the medical and health sciences area, written in highly technical language. The top relationships were self-loops in China, whereas international collaborations were between China and the United States. Argentina had high closeness and betweenness, and Spain had high closeness. On the basis of social media data, a combination of media outlets; educational institutions; and expert associations, particularly from Panama, influenced the diffusion of peer-reviewed information.ConclusionsWe determined the diffusion patterns of peer-reviewed resources in Spanish-speaking countries and Caribbean territories. This study aimed to advance the management and analysis of web-based public data from non-white people to improve public health communication in their regions.
| S-EPMC10448908 | biostudies-literature
Project description:It is becoming increasingly important to find ways for caregivers and service providers to collaborate. This study explored the potential for improving care and social support through shared online network use by family caregivers and service providers in home care.This qualitative study was guided by Rogers' Theory of Diffusion of Innovations [NY: Free Press; 1995], and involved focus group and individual interviews of service providers (n = 31) and family caregivers (n = 4). Interview transcriptions were analyzed using descriptive, topic, and analytic coding, followed by thematic analysis.The network was identified as presenting an opportunity to fill communication gaps presented by other modes of communication and further enhance engagement with families. Barriers included time limitations and policy-related restrictions, privacy, security, and information ownership.Online networks may help address longstanding home-care issues around communication and information-sharing. The success of online networks in home care requires support from care partners. Future research should pilot the use of online networks in home care using barrier and facilitator considerations from this study.
| S-EPMC5495540 | biostudies-other