scholarly journals Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review (Preprint)

2018 ◽  
Author(s):  
Kristy DM Wittmeier ◽  
Kendall Hobbs-Murison ◽  
Cindy Holland ◽  
Elizabeth Crawford ◽  
Hal Loewen ◽  
...  
Keyword(s):  
Social Media ◽  
Literature Review ◽  
Information Needs ◽  
Public Involvement ◽  
Hirschsprung Disease ◽  
Patient And Public Involvement ◽  
Web Based ◽  
Related Information ◽  
Quality Guidelines ◽  
Canadian Association

BACKGROUND Patient and public involvement in health research is important to produce relevant and impactful results. OBJECTIVE This 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. METHODS We 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. RESULTS Our 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. CONCLUSIONS With 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.

scholarly journals Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review

2018 ◽  
Vol 20 (12) ◽  
pp. e297 ◽  
Author(s):  
Kristy DM Wittmeier ◽  
Kendall Hobbs-Murison ◽  
Cindy Holland ◽  
Elizabeth Crawford ◽  
Hal Loewen ◽  
...  
Keyword(s):  
Social Media ◽  
Literature Review ◽  
Information Needs ◽  
Hirschsprung Disease ◽  
Caregiver Involvement

scholarly journals Quantifying Media Effects, Its Content, and Role in Promoting Community Awareness of Chikungunya Epidemic in Bangladesh

Epidemiologia ◽  
2021 ◽  
Vol 2 (1) ◽  
pp. 84-94
Author(s):  
Mst. Marium Begum ◽  
Osman Ulvi ◽  
Ajlina Karamehic-Muratovic ◽  
Mallory R. Walsh ◽  
Hasan Tarek ◽  
...  
Keyword(s):  
Social Media ◽  
Web Based ◽  
Study Objective ◽  
The Public ◽  
Mainstream Media ◽  
Related Information ◽  
Vector Borne ◽  
Media Outlet ◽  
And Control

Background: Chikungunya is a vector-borne disease, mostly present in tropical and subtropical regions. The virus is spread by Ae. aegypti and Ae. albopictus mosquitos and symptoms include high fever to severe joint pain. Dhaka, Bangladesh, suffered an outbreak of chikungunya in 2017 lasting from April to September. With the goal of reducing cases, social media was at the forefront during this outbreak and educated the public about symptoms, prevention, and control of the virus. Popular web-based sources such as the top dailies in Bangladesh, local news outlets, and Facebook spread awareness of the outbreak. Objective: This study sought to investigate the role of social and mainstream media during the chikungunya epidemic. The study objective was to determine if social media can improve awareness of and practice associated with reducing cases of chikungunya. Methods: We collected chikungunya-related information circulated from the top nine television channels in Dhaka, Bangladesh, airing from 1st April–20th August 2017. All the news published in the top six dailies in Bangladesh were also compiled. The 50 most viewed chikungunya-related Bengali videos were manually coded and analyzed. Other social media outlets, such as Facebook, were also analyzed to determine the number of chikungunya-related posts and responses to these posts. Results: Our study showed that media outlets were associated with reducing cases of chikungunya, indicating that media has the potential to impact future outbreaks of these alpha viruses. Each media outlet (e.g., web, television) had an impact on the human response to an individual’s healthcare during this outbreak. Conclusions: To prevent future outbreaks of chikungunya, media outlets and social media can be used to educate the public regarding prevention strategies such as encouraging safe travel, removing stagnant water sources, and assisting with tracking cases globally to determine where future outbreaks may occur.

scholarly journals Household medication safety practices during the COVID-19 pandemic: a descriptive qualitative study protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e044441
Author(s):  
Tamasine C Grimes ◽  
Sara Garfield ◽  
Dervla Kelly ◽  
Joan Cahill ◽  
Sam Cromie ◽  
...  
Keyword(s):  
Social Media ◽  
Qualitative Study ◽  
Medication Safety ◽  
Best Practice ◽  
Public Involvement ◽  
Comparative Method ◽  
Patient And Public Involvement ◽  
Safety Practices ◽  
Trinity College Dublin ◽  
Descriptive Qualitative

IntroductionThose who are staying at home and reducing contact with other people during the COVID-19 pandemic are likely to be at greater risk of medication-related problems than the general population. This study aims to explore household medication practices by and for this population, identify practices that benefit or jeopardise medication safety and develop best practice guidance about household medication safety practices during a pandemic, grounded in individual experiences.Methods and analysisThis is a descriptive qualitative study using semistructured interviews, by telephone or video call. People who have been advised to ‘cocoon’/‘shield’ and/or are aged 70 years or over and using at least one long-term medication, or their caregivers, will be eligible for inclusion. We will recruit 100 patient/carer participants: 50 from the UK and 50 from Ireland. Recruitment will be supported by our patient and public involvement (PPI) partners, personal networks and social media. Individual participant consent will be sought, and interviews audio/video recorded and/or detailed notes made. A constructivist interpretivist approach to data analysis will involve use of the constant comparative method to organise the data, along with inductive analysis. From this, we will iteratively develop best practice guidance about household medication safety practices during a pandemic from the patient’s/carer’s perspective.Ethics and disseminationThis study has Trinity College Dublin, University of Limerick and University College London ethics approvals. We plan to disseminate our findings via presentations at relevant patient/public, professional, academic and scientific meetings, and for publication in peer-reviewed journals. We will create a list of helpful strategies that participants have reported and share this with participants, PPI partners and on social media.

Sociodemographic Factors’ Influence on the Consumption and Assessment of COVID-19 Related Information–An International Web-Based Survey

2021 ◽  
Vol 14 (2 (40)) ◽  
pp. 26-44
Author(s):  
Sigrid STJERNSWÄRD ◽  
Anna-Karin IVERT ◽  
Stinne GLASDAM
Keyword(s):  
Social Media ◽  
Sociodemographic Factors ◽  
Cross Sectional ◽  
Web Based ◽  
Related Information ◽  
Education Levels ◽  
Reliability Assessments ◽  
Cross Sectional Design ◽  
People’S Attitudes ◽  
And Behavior

Information flows can affect people’s apprehension of the pan- demic and related behaviors. The aim is to explore how people access and assess COVID-19 information and whether sociodemographic factors are associated with these processes. Quantitative data from 928 persons from 29 countries who participated in an international web-based survey was ana- lyzed with descriptive and analytic statistics. Television, newspapers and social media were common sources to search for certain types of COVID-19 information. Age, educational level, employment status and sex were as- sociated with differences in terms of reported sources, types, and reliability assessments of retrieved information. Sex and education levels were associ- ated with differences pertaining to main sources and kinds of information searched. Younger respondents reported more frequent uses of social media than older respondents. Older respondents assessed information from tra- ditional media as more reliable information from social media. The current results show trends about where and how information is accessed and assessed during the pandemic. Some associations with sociodemographic factors were found, but the study’s cross-sectional design prevents causal inferences. Further research on consumption patterns of COVID-19 infor- mation and its effects on consumers is motivated, as this may in turn affect people’s attitudes and behavior relating to the pandemic.

The Changing Nature of Health Information Dissemination through the Role of Social Media

2013 ◽  
Vol 411-414 ◽  
pp. 110-114 ◽  
Author(s):  
Dan Dumbrell ◽  
Robert Steele
Keyword(s):  
Social Media ◽  
Health Information ◽  
Information Dissemination ◽  
Online Health Information ◽  
Web Based ◽  
Related Information ◽  
Public Health Information ◽  
Health Related ◽  
Health Information Sources

Traditional forms of health information dissemination have previously involved a few key organizations originating health-related information and disseminating this to clinicians and the community. This information was typically disseminated via private, formalized and non-digital interactions between health information sources (HIS) and clinicians and consumers. With the introduction of the Internet, Web-based health information dissemination led to some changes with greater availability of online health information. However the recent adoption and uptake of social media has led to many more parties, both organizations of varying types, and individuals, participating in public health information dissemination; and this has also led to new forms of sharing health-related information, particularly involving a greater role for individuals. In this paper we introduce empirical findings in relation to how organizations and individuals are now using social media for sharing health information, and from this suggest themes to describe the changes from traditional to contemporary health information dissemination, as well as the new emerging roles and forms of interaction for health information dissemination.

scholarly journals Uses and Gratifications : Twitter Tetap Menjadi Primadona

2021 ◽  
Vol 5 (2) ◽  
pp. 39-48
Author(s):  
Andhika Febi Hardina ◽  
Irwansyah Irwansyah
Keyword(s):  
Social Media ◽  
Data Collection ◽  
Mass Media ◽  
Literature Review ◽  
Information Needs ◽  
Online News ◽  
Media Communication ◽  
Depth Interview ◽  
The Social ◽  
Depth Interviews

This research discusses the social media Twitter, which is the first platform to search for the latest information or news. This is backed up by the large amount of news or information circulating on online news portals, often sourced from the social media Twitter. The purpose of this literature review is to see how Twitter was chosen by social media users as a place to fulfill their information needs. The scope of this research is in the mass media communication circle using Uses & Gratifications Theory (UGT) to explain why users choose their media to complement their needs. This study uses an in-depth interview exploratory description method. Data collection from journals or previous research is carried out based on the context and cases where the data and information are needed in this study. In addition, this study uses an exploratory description method of in-depth interviews with four respondents who use social media Twitter. Questions are given in a structured manner. The result of this research is that there is a new motivation for people to use Twitter.  

scholarly journals Use of social media for cancer prevention and early diagnosis: scoping review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e033592 ◽  
Author(s):  
Aradhna Kaushal ◽  
Angelos P Kassianos ◽  
Jessica Sheringham ◽  
Jo Waller ◽  
Christian von Wagner
Keyword(s):  
Social Media ◽  
Early Diagnosis ◽  
Cancer Prevention ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Research Questions ◽  
Media Interventions

IntroductionSocial media platforms offer unique opportunities for health promotion messages focusing on cancer prevention and early diagnosis. However, there has been very little synthesis of the evaluation of such campaigns, limiting the ability to apply learning to the design of future social media campaigns. We aimed to provide a broad overview of the current research base on social media interventions for cancer prevention and early diagnosis, to identify knowledge gaps and to inform policy, practice and future research questions.MethodsWe will use scoping review methodology to explore the available evidence on social media interventions for cancer prevention and early diagnosis, with a focus on methodological approaches. Quantitative and qualitative studies and reports will be identified through searching several research databases, through internet searching for grey literature and by screening the citations of studies included in the review. All identified studies will undergo independent title and abstract screening and full-text screening against inclusion and exclusion criteria. We plan to chart the data from included studies to record the characteristics of the social media interventions, resources, activities, outputs, outcomes and impact. Charted data will be collated and summarised using a narrative synthesis. The interpretation and implications of the findings will be enhanced by consultation with relevant stakeholders such as public health organisations, cancer charities, and patient and public involvement groups when preliminary results are available.Ethics and disseminationEthical approval is not required for this scoping review. The results will be used to identify research questions for future systematic reviews and to inform the development of future social media interventions. We will disseminate findings in peer-reviewed journals and at relevant conferences.

Patient and Public Involvement in Clinical Practice Guidelines

2011 ◽  
Vol 31 (6) ◽  
pp. E45-E74 ◽  
Author(s):  
France Légaré ◽  
Antoine Boivin ◽  
Trudy van der Weijden ◽  
Christine Pakenham ◽  
Jako Burgers ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Literature Review ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Public Involvement ◽  
The United States ◽  
Patient And Public Involvement ◽  
Bibliographic Databases ◽  
The Public ◽  
The Impact

Background. The role of patient and public involvement programs (PPIPs) in developing and implementing clinical practice guidelines (CPGs) has generated great interest. Purpose. The authors sought to identify key components of PPIPs used in developing and implementing CPGs. Data sources. The authors searched bibliographic databases and contacted relevant organizations. Study selection. In total, 2161 articles and reports were retrieved on PPIPs in the development and implementation of CPGs. Of these, 71 qualified for inclusion in the review. Data extraction. Reviewers independently extracted data on key components of PPIPs and barriers and facilitators to their operation. Data synthesis. Over half of the studies were published after 2002, and more than half originated from the United States, the United Kingdom, Australia, and Germany. CPGs that involved patients and the public addressed a variety of health problems, especially mental health and cancer. The most frequently cited objective for using PPIPs in developing CPGs was to incorporate patients’ values or perspectives in CPG recommendations. Patients and their families and caregivers were the parties most often involved. Methods used to recruit PPIP participants included soliciting through patient/public organizations, sending invitations, and receiving referrals and recruits from clinicians. Patients and the public most often participated by taking part in a CPG working group, workshop, meeting, seminar, literature review, or consultation such as a focus group, individual interview, or survey. Patients and the public principally helped formulate recommendations and revise drafts. Limitations. The authors did not contact the authors of the studies. Conclusion. This literature review provides an extensive knowledge base for making PPIPs more effective when developing and implementing CPGs. More research is needed to assess the impact of PPIPs and resources they require.

Research involving people with dementia: a literature review

2017 ◽  
Vol 21 (2) ◽  
pp. 107-114 ◽  
Author(s):  
Emma Rivett
Keyword(s):  
Literature Review ◽  
Research And Development ◽  
Design Methodology ◽  
Public Involvement ◽  
Small Body ◽  
Patient And Public Involvement ◽  
Ethical Considerations ◽  
Ongoing Research ◽  
Content Type ◽  
People With Dementia

Purpose The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers. Design/methodology/approach The approach takes the form of a literature review. Findings Despite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored. Originality/value This paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.

EVALUATION CRITERIA OF PATIENT AND PUBLIC INVOLVEMENT IN RESOURCE ALLOCATION DECISIONS: A LITERATURE REVIEW AND QUALITATIVE STUDY

2017 ◽  
Vol 33 (2) ◽  
pp. 270-278 ◽  
Author(s):  
Zahava R.S. Rosenberg-Yunger ◽  
Ahmed M. Bayoumi
Keyword(s):  
Decision Making ◽  
Resource Allocation ◽  
Literature Review ◽  
Public Involvement ◽  
Stakeholder Involvement ◽  
Evaluation Criteria ◽  
Patient And Public Involvement ◽  
Noticeable Effect ◽  
Allocation Decisions ◽  
Resource Allocation Decisions

Objectives: We developed specific evaluation criteria to assess patient and public involvement in resource allocation decisions in health care.Methods: We reviewed the literature from health and other sectors relevant to stakeholder involvement and conducted twenty-seven key informant interviews with stakeholders knowledgeable about patient and public involvement in Canadian drug resource allocation decisions. We used an inductive qualitative thematic approach to analyze the interviews with codes and categories developed directly from individuals’ interview transcripts.Results: Integrating respondents’ comments and the literature review, we identified nine evaluation criteria of patient and the public involvement in healthcare resource allocation decision making: clarity regarding rationale and roles of patient and public members, sufficient support, adequate representation of relevant views, fair decision-making processes, legitimacy of committee processes, adequate opportunity for participation, meaningful degree of participation, noticeable effect on decisions, and considerations of the efficiency of patient and public involvement.Conclusions: Our results will help to develop methods to evaluate patient and public involvement in healthcare decision making.

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