scholarly journals The Importance of Accessible Information in Promoting the Inclusion of People with an Intellectual Disability

Disabilities ◽  
2021 ◽  
Vol 1 (3) ◽  
pp. 132-150
Author(s):  
Melody M. Terras ◽  
Dominic Jarrett ◽  
Sharon A. McGregor
Keyword(s):  
Intellectual Disability ◽  
Information Provision ◽  
Online Information ◽  
Related Information ◽  
Accessible Information ◽  
Healthcare Decision Making ◽  
Health And Social Care ◽  
Framework Approach ◽  
Health Related ◽  
The Uk

People with an intellectual disability experience high levels of social exclusion and a range of health inequalities. Increased inclusion and participation in healthcare decision making have been identified as key to promoting inclusion in health and social care. However, achieving these objectives requires increased recognition of the communication and health literacy needs of individuals with an intellectual disability and consideration of the appropriateness of the information currently provided. In this article, we report the results of a pre-COVID-19 qualitative study exploring the provision and use of accessible information to support the healthcare inclusion of individuals with an intellectual disability. A total of 35 clinicians participated in focus group discussions, and 10 people with intellectual disabilities and 10 carers were interviewed regarding their experiences of using accessible health-related information. Qualitative data analysis using a framework approach highlighted the crucial role of communication partners when using accessible information, deficits in current National Health Service (NHS: UK’s publicly funded health care system) information provision in the UK, and possible broader relevance of accessible resources. The implications of these findings for the provision of accessible information in a post-COVID-19 environment are explored, and recommendations are made for the increased integration and theory-driven research to inform the provision, content, and use of health-related information, especially the provision of online information, in the future.

scholarly journals Betegpreferenciák az egészségügyi célú internethasználatban

2018 ◽  
Vol 159 (51) ◽  
pp. 2175-2182
Author(s):  
Zsuzsa Varga ◽  
Tamás Horváth
Keyword(s):  
Mobile Apps ◽  
Online Communication ◽  
Medical Society ◽  
The Internet ◽  
Online Information ◽  
Smartphone Applications ◽  
Related Information ◽  
Health Related ◽  
Use Of Internet ◽  
Monitoring Devices

Abstract: Introduction: More sophisticated implementation of the Internet in healthcare improves medical services innumerably. To better understand the patients’ preferences for health-related use of Internet is warranted. Aim: Our aim was to determine the patients’ health-related Internet use. Method: Patients attending our private clinic between October 2016 and April 2017 were surveyed. Results: 208 questionnaires have been evaluated. Most patients use Internet daily, primarily on mobiles. The majority have already searched for health-related information online, 19% do regularly. 53% are satisfied with online contents and open to websites recommended by physicians. 32% of patients have already communicated with doctors online and 93% are satisfied doing so. 8% of patients use health-related smartphone applications regularly, 6% use other Internet-based health-monitoring devices. 60% of patients have already chosen a physician based on web information, while 17% do regularly. 82% of respondents have not yet shared health-related information on the Internet. Conclusions: The Internet is widely used by patients seeking information about their health, yet they are dissatisfied with the quality. Many patients are open to recommendations offered by physicians regarding sources of online information. Online communication between physician and patient might increase patient satisfaction. There is no breakthrough in the use of health-related websites, mobile apps or devices in Hungary. The demand for such service could be considered moderate. Additionally, online patient forums are not specifically popular. The medical society in Hungary should accept that physician selection by patients depends more increasingly upon information made available online. Orv Hetil. 2018; 159(51): 2175–2182.

scholarly journals Consumer perceptions of using social media for health purposes: Benefits and drawbacks

2018 ◽  
Vol 25 (4) ◽  
pp. 1661-1674 ◽  
Author(s):  
Arcelio Benetoli ◽  
Timothy F Chen ◽  
Parisa Aslani
Keyword(s):  
Social Media ◽  
Health Knowledge ◽  
Information Overload ◽  
Treatment Options ◽  
Online Information ◽  
Social And Emotional ◽  
Advantages And Disadvantages ◽  
Related Information ◽  
Health Related ◽  
Use Of Social Media

Consumers are increasingly using social media to interact with other consumers about health conditions and treatment options. This study aimed to investigate the advantages and disadvantages of using social media for health-related purposes from the consumers’ perspectives. Five focus groups with 36 Australian adults with a chronic condition and on medication were conducted, audio-recorded, transcribed verbatim, and thematically analysed. Consumers reported that social media was very convenient, for accessing health-related information and for peer engagement; user-friendly; improved their health knowledge; empowered them; and provided social and emotional support. The disadvantages included information overload, wasting time; negative feelings; doubts about online information credibility; and issues related to online interactions. Despite some disadvantages, health-related use of social media led consumers to feel supported, knowledgeable, and empowered. Consumers’ motivation to keep accessing social media for health-related purposes opens up avenues for the delivery of services via social media.

scholarly journals Digital health literacy and online information seeking in times of COVID-19. A cross-sectional survey among university students in Germany (Preprint)

2020 ◽  
Author(s):  
Kevin Dadaczynski ◽  
Orkan Okan ◽  
Melanie Messer ◽  
Angela Y. M. Leung ◽  
Rafaela Rosário ◽  
...  
Keyword(s):  
Social Media ◽  
Health Literacy ◽  
University Students ◽  
Information Seeking ◽  
Digital Health ◽  
Online Information ◽  
Cross Sectional ◽  
Related Information ◽  
Health Related ◽  
Online Information Seeking

BACKGROUND Digital communication technologies play an important role in governments’ and public health authorities’ health communication strategies during the COVID-19 pandemic. The internet and social media have become important sources of health-related information on the coronavirus and on protective behaviours. In addition, the COVID-19 infodemic spreads faster than the coronavirus itself, which interferes with governmental health-related communication efforts. This puts national public health containment strategies in jeopardy. Therefore, digital health literacy is a key competence to navigate coronavirus-related information and service environments. OBJECTIVE This study aimed to investigate university students’ digital health literacy and online information seeking behaviours during the early stages of the coronavirus pandemic in Germany. METHODS A cross-sectional study among N=14,916 university students aged ≥18 from 130 universities across all sixteen federal states of Germany was conducted using an online survey. Along with sociodemographic characteristics (sex, age, subjective social status) measures included five subscales from the Digital Health Literacy Instrument (DHLI), which was adapted to the specific coronavirus context. Online information seeking behaviour was investigated by examining the online sources used by university students and the topics that students search for in connection with the coronavirus. Data were analysed using univariate and bivariate analyses. RESULTS Across digital health literacy dimensions, the greatest difficulties could be found for assessing the reliability of health-related information (42.3%) and the ability to determine whether the information was written with commercial interest (38.9%). Moreover, respondents also indicated that they most frequently have problems finding the information they are looking for (30.4%). When stratified according to sociodemographic characteristics, significant differences were found with female university students reporting a lower DHLI for the dimensions of ‘information searching’ and of ‘evaluating reliability’. Search engines, news portals and public bodies’ websites were most often used by the respondents as sources to search for information on COVID-19 and related issues. Female students were found to use social media and health portals more frequently, while male students used Wikipedia and other online encyclopaedias as well as YouTube more often. The use of social media was associated with a low ability to critically evaluate information, while opposite differences were observed for the use of public websites. CONCLUSIONS Although digital health literacy is, in summary, well developed in university students, a significant proportion of students still face difficulties with certain abilities to deal with information. There is need to strengthen the digital health literacy capacities of university students using tailored interventions. Improving the quality of health-related information on the internet is also key. CLINICALTRIAL

Understanding the Lived Experience of Patients with Melanoma: Real-World Evidence Generated through a European Social Media Listening Analysis (Preprint)

2021 ◽  
Author(s):  
Jyoti Chauhan ◽  
Sathyaraj Aasaithambi ◽  
Iván Márquez-Rodas ◽  
Luigi Formisano ◽  
Sophie Papa ◽  
...  
Keyword(s):  
Social Media ◽  
Lived Experience ◽  
Social Life ◽  
Patient Journey ◽  
Related Information ◽  
Stakeholder Perspectives ◽  
Health Related ◽  
Social Media Platforms ◽  
The Uk ◽  
Media Channels

BACKGROUND Cutaneous melanoma is an aggressive malignancy that is proposed to account for 90% of skin cancer-related mortality. Individuals with melanoma experience both physical and psychological impacts associated with their diagnosis and treatment. Health-related information is being increasingly accessed and shared by stakeholders on social media platforms. OBJECTIVE This study aimed to assess how individuals living with melanoma use social media to discuss their needs and provide their perceptions of the disease, from across 14 European countries. METHODS Social media sources including Twitter, forums, and blogs were searched using predefined search strings of keywords relating to melanoma. Manual and automated relevancy approaches filtered the extracted data for content that provided patient-centric insights. This contextualized data was then mined for insightful concepts around symptoms, diagnosis, treatment, impacts, and the lived experiences of melanoma. RESULTS A total of 182,000 posts related to melanoma were identified between November 2018‒November 2020. Following exclusion of irrelevant posts and using random sampling methodology, 864 posts were identified as relevant to the study objectives. Of the social media channels included, Twitter was the most commonly used, followed by forums and blogs. Most posts originated from the UK (38%) and Spain (16%). Sixty-two percent of relevant posts were categorized as originating from individuals with melanoma. The most frequently discussed melanoma-related topics were treatment (55%), diagnosis and tests (33%), and remission (24%). The majority of treatment discussions were about surgery (67%), followed by immunotherapy (12%). In total, 255 posts discussed the impacts of melanoma, which included emotional burden (70%), physical impacts (24%), effects on social life (17%), and financial impacts (4%). CONCLUSIONS Findings from this study highlight how melanoma stakeholders discuss key concepts associated with the condition on social media, adding to the conceptual model of the patient journey. This social media listening approach is a powerful tool in exploring melanoma stakeholder perspectives, providing insights that can be used to corroborate existing data and inform future studies.

Crowdfunding for medical expenses in the United Kingdom

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
I Pifarré Coutrot ◽  
L Cornelsen ◽  
R Smith
Keyword(s):  
Policy Development ◽  
Social Care ◽  
Financial Burden ◽  
Unmet Need ◽  
Policy Support ◽  
Health Coverage ◽  
Health And Social Care ◽  
Health Related ◽  
The Uk ◽  
Universal Health

Abstract Background Medical crowdfunding is a rapidly growing phenomenon worldwide and a new means for patients to finance health related expenses. It raises many ethical concerns such as increasing inequities. In the UK, which operates a state-funded universal health care system, the phenomenon is unexpected and hasn't yet been studied. Our study aims at answering basic questions as who is using crowdfunding to fund health-related expenses, for what and why. Methods We have drawn the first 400 medical campaigns amongst 1,000 available on GoFundMe UK website. We used a content analysis method to extract data from narratives on age, sex, health condition and funds' purposes. Results Among the 400 campaigns, 1/2 requested funds for cancer care for both common and rare cancers, from which 1/3 disclosed a stage 4. A third of the sample sought funds to get treatment abroad, mostly in Germany and the US, for most part cancer therapies such as immunotherapy but also alternative therapies. A quarter of the sample sought support to alleviate financial burden associated with ill-health. Other purposes included getting private care in the UK (19%) and getting medical equipment (18%). Conclusions Our findings may put forward some gaps within the National Health Service (NHS) and social care such as issues to access therapies or equipment, lack of holistic care and inadequate welfare patient support. However, it does not explain fully the rise of crowdfunding that may also be a counterpart of patients' empowerment. For instance, patients can shift to the private sector, in the UK or abroad, when a treatment is not available within the NHS, such as high cost last-resort treatments for those with poor prognosis. We recommend policy makers to: use medical crowdfunding to inform policy,support patients to make empowered decisions,protect patients from commercial traps. Key messages Studying medical crowdfunding allows better understanding of patients’ perceived or actual unmet need for health and social care to inform policy development. This threat to equity should be addressed globally by providing patients with support to be empowered, with universal health coverage and by regulating better private facilities and health tourism.

Health and medical coverage in the UK national press

1992 ◽  
Vol 1 (4) ◽  
pp. 367-382 ◽  
Author(s):  
Vikki Entwistle ◽  
Micheline Hancock-Beaulieu
Keyword(s):  
Scientific Information ◽  
Information Provision ◽  
Individual Case ◽  
Public Understanding ◽  
Background Information ◽  
Health Coverage ◽  
Subject Categories ◽  
Diet And Exercise ◽  
Health Related ◽  
The Uk

The growth of UK public interest in health in the last decade is reflected by the inclusion in most national newspapers of regular health or medical sections. These potentially allow subjects to be covered in detail, with more background information and useful advice. This paper reports on a content analysis study of eight national newspapers, which aimed to obtain an overview of press health coverage, to compare the coverage of popular and quality papers, and to analyse differences in health topic coverage between 1981 and 1990. The subject coverage, information provision and presentation of health related articles were considered. The most common subject categories were diseases, preventive medicine (including diet and exercise) and the National Health Service. Class inequalities in health received very little coverage. Clear differences were confirmed between quality broadsheet and popular tabloid newspapers. Quality papers provided more scientific information about health and paid more attention to political contexts. They made more use of authoritative journals and reports than popular papers, which focused on individual case histories and tended to quote a lay viewpoint. Popular press articles were generally more sensationalized and less objective in their reporting style. Newspapers do not exist solely to further public understanding, but have potential to contribute to it. Some informative, useful articles about health are found, but the study shows room for improvement, especially among the papers whose readership is concentrated in lower socio-economic groups.

scholarly journals Romanian and German Seniors in Quest of Online Health-Related Information: An Exploratory Comparative Study

2018 ◽  
Vol 20 (1) ◽  
pp. 25
Author(s):  
Valentina Marinescu ◽  
Simona Rodat
Keyword(s):  
Internet Use ◽  
Online Communication ◽  
General Information ◽  
The Internet ◽  
Online Information ◽  
Medical Communication ◽  
Related Information ◽  
Starting Point ◽  
Two Samples ◽  
Health Related

In the last years a shift in the practice of medical communication has occurred and it leads to a displacement from a paternalistic model of patient-provider information toward a model implying an embeddedness of the medical and human values in the medical interaction and in the decision-taking process of the informed patient. Researches show that older adults respond differently to online communication than younger adults. In this context, seniors face new challenges as regards health-related information and medical communication. The present study deals comparatively with the health-related internet use by the seniors in two European countries: Romania and Germany. Using a qualitative methodology, which involved the in-depth semi-structured interviewing of twenty persons aged 65 years or over who used the internet including for health-related search, we tried to find out which are the similarities and differences between the two samples as concerns health-related online informing and medical communication. Our research has revealed a number of interesting results and inferences. Thus, while between the two samples there are similarities as regards using the internet as a starting point for general information related to health and making informed medical decisions, there exist also a series of differences as regards various aspects, such as the health-related internet use itself – the interest and the ways of searching, the accessed content and websites, the trust in the reliability of the online information, the online feedback and activism etc., as well as the openness to discuss with the physicians about the information gained by the internet consumption.

Relative Quality of Internet-Derived Oesophageal Cancer Information

2010 ◽  
Vol 92 (8) ◽  
pp. 1-3 ◽  
Author(s):  
TD Reid ◽  
C Beaton ◽  
IL Davies ◽  
D Arnold ◽  
JBM Ward ◽  
...  
Keyword(s):  
Health Information ◽  
Medical Information ◽  
Internet Access ◽  
Cancer Information ◽  
The Internet ◽  
Related Information ◽  
Internet Users ◽  
Health Related ◽  
The Usa ◽  
The Uk

Worldwide internet access is increasing exponentially. The UK Government Office for National Statistics reported that between 2002 and 2009 the proportion of UK households with internet access increased from 46% to 70%. Between 2007 and 2009 the proportion of UK adults using the internet to access health information rose from 27% to 42%. Similar situations exist in Continental Europe and the USA, where 52% of internet users and 61% of adults respectively search online for medical information. In 2003 it was estimated that 4.5% of all internet searches globally were for health related information. Moreover, patients now frequently choose to seek health information online. Indeed Hesse et al reported that almost one in two patients search the internet before consulting a physician.

The influencing factors of cyberchondria in residents in China during the COVID-19 epidemic: health anxiety and online information seeking behavior. Cross-sectional study. (Preprint)

2020 ◽  
Author(s):  
Aijing Luo ◽  
Xiao-Qing Peng ◽  
Yang Chen ◽  
Yi-Chuan Zhang ◽  
Fei Liu ◽  
...  
Keyword(s):  
Influencing Factors ◽  
Information Seeking ◽  
Health Anxiety ◽  
Information Seeking Behavior ◽  
Online Information ◽  
Traditional Media ◽  
Related Information ◽  
Seeking Behavior ◽  
Health Related ◽  
Online Information Seeking

BACKGROUND Cyberchondria is considered “the anxiety-amplifying effects of online health-related searches”, and associated with health anxiety and online health-related information seeking behavior. However, data on the prevalence and influencing variables of cyberchondria are still scarce. Until now, there have been few studies on cyberchondria in residents in China, especially in the context of COVID-19 outbreaks in China. OBJECTIVE To investigate the prevalence and influencing factors of cyberchondria in residents in China during the epidemic period of coronavirus disease 2019. METHODS The participants were 674 community residents of a Chinese city surveyed from February 1 to 15, 2020. We administered online measures, including the Chinese Short Form of the Cyberchondria Severity Scale (CSCS), Short Health Anxiety Inventory (SHAI), eHealth Literacy Scale (eHEALS), Patient Health Questionnaire-15 (PHQ-15), and COVID-19-related online information seeking behavior questionnaire. RESULTS In our study, the average CSCS total score of residents was 30.65±11.53 during the virus epidemic; 79.4% of participants had a moderate level of cyberchondria, while 11.1% experienced a higher level of cyberchondria. Gender, age, monthly income, education level, personal illness with Helicobacter pylori infection, relatives’ illness with chronic bronchitis, COVID-19-related online information seeking frequency and duration were all significantly associated with the CSCS total score (p<.05), SHAI total score (β=0.598>0, P<.05), and eHEALS score (β=0.162>0, P<.05). Searching for information on diagnosing COVID-19 (β=2.28>0, P<.05) and the use of general search engines (β=1.867>0, P<.05) were independent risk factors for cyberchondria, while searching lasting less than 10 minutes each (β=-2.992<0, P<.05), the use of traditional media digital platforms (β=-1.650<0,P<.05), and the use of professional medical communication platforms (β=-4.189<0,P<.05) were independent protective factors for cyberchondria. CONCLUSIONS Most Chinese residents have a moderate level of cyberchondria, and cyberchondria has a strong positive association with health anxiety in residents in China during the virus epidemic. Searching online for less than 10 minutes for COVID-19-related information is an adoptable suggestion, and choosing a traditional media digital platform and a professional medical communication platform are recommended and helpful for alleviating cyberchondria.

scholarly journals Online contraceptive discussion forums: a qualitative study to explore information provision

2020 ◽  
pp. bmjsrh-2020-200719
Author(s):  
Tom Courtenay ◽  
Paula Baraitser
Keyword(s):  
Information Needs ◽  
Technical Information ◽  
Information Provision ◽  
Online Information ◽  
Discussion Forums ◽  
Online Forums ◽  
Qualitative Thematic Analysis ◽  
Stratified Sample ◽  
The Uk ◽  
Effective Use

BackgroundWomen in the UK spend up to 30 years avoiding pregnancy, and effective use of contraception requires detailed information and support. Online forums offer opportunities to discuss contraception with few restrictions. Analysis of these discussions may generate learning on the information needs and preferences of their users. We analysed contraceptive discussions on forums to explore content, motivation for engaging, behaviours observed and outcomes reported.MethodsWe selected 50 threads across five English-speaking public forums, which contained more than 1000 contraceptive-specific threads. We generated a stratified sample of these threads (n=250) and then completed a qualitative thematic analysis.ResultsForum users seek urgent help, emotional support and the detailed accounts of others. The work of posting on forums is significant and includes framing the question to generate the desired response type, managing responses and assessing their value. Conversations were consistently framed in relation to healthcare and were important for preparing for, understanding and responding to consultations. Most of the technical information was accurate or corrected within the conversation. For most users this enquiry was part of a broader decision-making process and there was no evidence that users planned to make decisions based on forum discussions alone.ConclusionsOur analysis has implications for healthcare organisations that offer or signpost to online information on contraception. It suggests that improvements in the online ‘wrap around’ information are needed to help decide when to consult, prepare for the consultation, understand the information given and manage post-consultation questions.

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