scholarly journals The Influence of different Sources on Disease-related Knowledge among Patients with Rare Diseases: A Qualitative Study

2019 ◽  
Author(s):  
Svenja Litzkendorf ◽  
Martin Frank ◽  
Ana Babac ◽  
Daniel Rosenfeldt ◽  
Franziska Schauer ◽  
...  
Keyword(s):  
Rare Diseases ◽  
Information Needs ◽  
Qualitative Content Analysis ◽  
Information Source ◽  
Information Access ◽  
Disease Stage ◽  
Personal Contact ◽  
Related Factors ◽  
Self Help ◽  
Different Sources

Abstract Background: Finding reliable information on one of more than 7,000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources about rare diseases, still little is known about how users rate these sources and how their importance changes over time. Methods: Fifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Evaluation followed qualitative content analysis developed by Philipp Mayring. Results: The internet is the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help. Conclusions: People rarely use just one type of source, but rather refer to different sources and informants. The source used depends on the type of information sought as well as other person-related factors such as preexisting knowledge and the disease stage. To improve people’s information searching and connect them with specialists in rare diseases, a central information portal on rare diseases is a suitable access point to provide free and quality assured information for patients, caregivers, and physicians. This would allow not only patients but also doctors to find quality assured information on symptoms and therapies as well as patient associations and specialized doctors.

PERSONALIZING THE SOURCE SELECTION AND THE RESULT MERGING PROCESS

2009 ◽  
Vol 18 (02) ◽  
pp. 331-354 ◽  
Author(s):  
SAMIR KECHID ◽  
HABIBA DRIAS
Keyword(s):  
Information Retrieval ◽  
Information Needs ◽  
Retrieval System ◽  
Information Source ◽  
Information Access ◽  
Information Retrieval System ◽  
Specific Information ◽  
Distributed Environment ◽  
Source Selection ◽  
User Query

The World Wide Web knows an incessant and very fast development. Currently, finding useful information on the Web is a time consuming process. In this paper, we present PIRS a personalized Information Retrieval System in a distributed environment. Most prior research in distributed information access focused on selecting and merging information that has the most relevant content according to the query but ignored the user's specific needs. The underlying idea is that different users have different backgrounds, goals and interests when seeking information and thus, the same query may cover different specific information needs according to who emitted it. However, with the ever expanding Web, users are faced with a huge number of information resources. Consequently, such query-based information access strategies lead to inaccurate query results. PIRS extends the state of the art in a Web-based information retrieval system in distributed environment. First, it develops models for representing both user and information source using feature based profiles. Second, PIRS expands a user query according to his profile. Third, it develops algorithms for source selection and results merging that personalize the computation of the relevance score of a document in response to the user's query. PIRS has been experimented with several known information source. The experimental results obtained show the effectiveness of our approach.

scholarly journals “Unrigging the support wheels” - A qualitative study on patients’ experiences with and perspectives on low-intensity CBT

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Elisa Haller ◽  
Nicole Besson ◽  
Birgit Watzke
Keyword(s):  
Qualitative Content Analysis ◽  
Controlled Trial ◽  
Behavioural Therapy ◽  
Routine Care ◽  
Personal Contact ◽  
Advantages And Disadvantages ◽  
Personal Impact ◽  
Category System ◽  
Low Intensity ◽  
Self Help

Abstract Background Low-intensity treatments imply reduced therapist contact due to an emphasis on self-help and the use of technologies to deliver treatment. The role of the remoteness, the reduced therapist contact, and the interplay of these components has not been differentiated from a patients’ perspective so far. This study’s purpose is to capture patients’ experiences with telephone-based self-help cognitive behavioural therapy (tel-CBT). Methods A subsample of mildly to moderately depressed patients (N = 13) who finished tel-CBT as part of a larger randomised controlled trial (RCT) in routine care were interviewed using a semi-structured questionnaire. Interviews were audiotaped, transcribed verbatim, and independently coded by two coders blind to treatment outcome. Using qualitative content analysis with deductive and inductive procedures, a two-level category system was established. Results The category system contains four category clusters regarding expectations, self-help related aspects, telephone-related aspects, and implications for patients’ treatment pathway, and subsumes a total of 15 categories. Self-help related aspects circulate around the interplay between written materials and professional input, trust and support in the therapeutic relationship and its relation to the initial personal contact, as well as CBT principles. Telephone-related aspects entail perceived advantages and disadvantages of the telephone on an organisational and content level as well as a discourse around distance and closeness in the interaction. Although patients raised doubts regarding the long-term effect of the intervention on symptomatology, patients expressed satisfaction with the treatment and reported an immediate as well as a longer lasting personal impact of the treatment. These results indicate user acceptance with tel-CBT. Conclusions This qualitative analysis captures patients’ experiences with tel-CBT and the perceived helpfulness of the diverse treatment components. This can facilitate refining aspects of low-intensity treatments and might improve dissemination. Trial registration ClinicalTrials.gov NCT02667366. Registered on 3 December 2015.

scholarly journals A Relationship between Socio-personal Characteristics with the Extent of Accessing Different Information Sources on Dairy Husbandry Activities by Field Veterinarians in Coastal Odisha

2021 ◽  
Author(s):  
S.M. Nanda ◽  
P. Swain ◽  
B.C. Das ◽  
S.K. Dash ◽  
K. Shweta ◽  
...  
Keyword(s):  
Information Sources ◽  
Information Source ◽  
Personal Characteristics ◽  
Female Respondent ◽  
Personal Contact ◽  
Contact Method ◽  
Age Group ◽  
Phone Calls ◽  
Significant Difference ◽  
Different Sources

Background: Veterinarians in field conditions access different sources for gathering information on dairy husbandry activities. The information source used most frequently must be given due importance by the researchers and scientists to provide quality information. Methods: The present study was conducted among 120 field veterinarians of coastal Odisha. The sources used by the respondent veterinarians were identified and analysed for the extent of usage of the sources. The mean was calculated for frequency of accessing different sources for information on dairy husbandry activities as per the data collected in a 3-point continuum scale namely Always (2), Sometimes (1) and Never (0) and ranks were assigned accordingly. The effect of different independent variables on different information sources was analysed using one way ANOVA. Result: It was reported that usage of internet by the respondents was ranked 1st followed by WhatsApp 2nd, Personal contact 3rd, Phone calls 4th, Technical literatures 5th, books 6th, journals 7th, TV 8th, Apps 9th, SMS 10th and email 11th respectively. It was observed that the female respondent veterinarians were using books and journals significantly more than their male counterparts. Significant difference was observed in usage of books for acquiring information between the respondent veterinarians of young age group (up to 35 years) and old age group ( greater than 50 years). Significant differences were observed between the respondent veterinarians with less than 10 years of job experience and greater than 20 years of experience for using personal contact method with the lower estimates for the higher experienced group.

Users’ experiences of an evidence-informed health information website for spinal cord injury: A prospective qualitative study across the hospital and community setting (Preprint)

2020 ◽  
Author(s):  
Christina Cassady ◽  
William Ben Mortenson ◽  
Andrea F Townson ◽  
Shannon Sproule ◽  
Janice Jennifer Eng
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Health Information ◽  
Information Needs ◽  
Information Source ◽  
Family Members ◽  
Hospital Setting ◽  
Community Setting ◽  
Therapeutic Education ◽  
Cord Injury

BACKGROUND Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI). OBJECTIVE The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour. METHODS Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis. RESULTS The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections. CONCLUSIONS Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.

The dilemma of the direct answer

2020 ◽  
Vol 54 (1) ◽  
pp. 1-12
Author(s):  
Martin Potthast ◽  
Matthias Hagen ◽  
Benno Stein
Keyword(s):  
Paradigm Shift ◽  
Information Needs ◽  
Web Search ◽  
Information Sources ◽  
Information Access ◽  
User Preferences ◽  
Information System Design ◽  
Trade Offs ◽  
Remarkable Progress ◽  
Direct Answer

No Web technology has undergone such an impressive evolution as Web search engines did and still do. Starting with the promise of "Bringing order to the Web" 1 by compiling information sources matching a query, retrieval technology has been evolving to a kind of "oracle machinery", being able to recommend a single source, and even to provide direct answers extracted from that source. Notwithstanding the remarkable progress made and the apparent user preferences for direct answers, this paradigm shift comes at a price which is higher than one might expect at first sight, affecting both users and search engine developers in their own way. We call this tradeoff "the dilemma of the direct answer"; it deserves an analysis which has to go beyond system-oriented aspects but scrutinize the way our society deals with both their information needs and means to information access. The paper in hand contributes to this analysis by putting the evolution of retrieval technology and the expectations at it in the context of information retrieval history. Moreover, we discuss the trade offs in information behavior and information system design that users and developers may face in the future.

scholarly journals “I actually got my first job through my ex-colleague”: Employment-related information seeking behavior of Bangladeshi immigrants in Canada

2021 ◽  
pp. 096100062199280
Author(s):  
Nafiz Zaman Shuva
Keyword(s):  
Information Seeking ◽  
Information Needs ◽  
Information Sources ◽  
Information Source ◽  
Occupational Status ◽  
Structured Interviews ◽  
Related Information ◽  
Immigrant Professionals ◽  
Government Of Canada ◽  
First Job

This study explores the employment-related information seeking behaviour of Bangladeshi immigrants in Canada. Using a mixed-methods approach, the study conducted semi-structured interviews with 60 Bangladeshi immigrants in Ontario, Canada, and obtained 205 survey responses. The study highlights the centrality of employment-related settlement among Bangladeshi immigrants in Ontario and reports many immigrants not being able to utilize their education and skills after arrival in Canada. The results show that Bangladeshi immigrants utilize various information sources for their employment in Canada, including friends and professional colleagues, online searchers, and settlement agencies. Although Bangladeshi immigrants utilized a large array of information sources for meeting their employment-related information needs, many interview participants emphasized that the employment-related benefits they received was because of their access to friends and professional colleagues in Canada. The survey results echoed the interview findings. The cross-tabulation results on post-arrival information sources and occupation status as well as first job information sources and occupational status in Canada show a significant association among the use of the information source “friends and professional colleagues in Canada” and immigrants’ occupational status. The study highlights the benefits of professional colleagues among immigrants in employment-related settlement contexts. It also reports the challenges faced by many immigrant professionals related to employment-related settlement because of the lack of access to their professional friends and colleagues in Canada. The author urges the Federal Government of Canada, provincial governments, and settlement agencies working with newcomers to offer services that would connect highly skilled immigrants with their professional networks in Canada, in order to get proper guidance related to obtaining a professional job or alternative career. The author calls for further studies on employment-related information seeking by immigrants to better understand the role information plays in their settlement in a new country.

Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: A literature review

2016 ◽  
Vol 22 (4) ◽  
pp. 992-1016 ◽  
Author(s):  
Martina A Clarke ◽  
Joi L Moore ◽  
Linsey M Steege ◽  
Richelle J Koopman ◽  
Jeffery L Belden ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Information ◽  
Information Search ◽  
Information Needs ◽  
Information Sources ◽  
Medical Condition ◽  
Information Access ◽  
The Internet ◽  
Common Information ◽  
Primary Care Patients

To synthesize findings from previous studies assessing information needs of primary care patients on the Internet and other information sources in a primary care setting. A systematic review of studies was conducted with a comprehensive search in multiple databases including OVID MEDLINE, CINAHL, and Scopus. The most common information needs among patients were information about an illness or medical condition and treatment methods, while the most common information sources were the Internet and patients’ physicians. Overall, patients tend to prefer the Internet for the ease of access to information, while they trust their physicians more for their clinical expertise and experience. Barriers to information access via the Internet include the following: socio-demographic variables such as age, ethnicity, income, education, and occupation; information search skills; and reliability of health information. Conclusion: Further research is warranted to assess how to create accurate and reliable health information sources for both Internet and non-Internet users.

Challenges of Providing Health Care in Complex Emergencies: A Systematic Review

2021 ◽  
pp. 1-5
Author(s):  
Hesam Seyedin ◽  
Morteza Rostamian ◽  
Fahimeh Barghi Shirazi ◽  
Haleh Adibi Larijani
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Health Services ◽  
Health Care Providers ◽  
Health Care Delivery ◽  
Qualitative Content Analysis ◽  
Care Delivery ◽  
Information Access ◽  
Care Providers ◽  
Complex Emergencies

Abstract Providing health care in times of complex emergencies (CEs) is one of the most vital needs of people. CEs are situations in which a large part of the population is affected by social unrest, wars, and food shortages. This systematic review study was conducted to identify the challenges of health-care delivery in CEs. We searched terms related to health-care delivery and CEs in PubMed, Web of Sciences, Science Direct, and Google scholar databases, as well as Persian databases SID and Magiran. The searching keywords included: “Health Care, Complex Crises, War, Humanitarian, Refugees, Displaced Persons, Health Services, and Challenges.” Of 409 records, we selected 6 articles based on the Preferred Reporting Items for Systematic Reviews (PRISMA) checklist. Studies were analyzed through qualitative content analysis. The results show that CEs affect health-care delivery in 4 primary areas: the workforce, infrastructure, information access, and organization of health services. These areas can pose potential threats for health-care providers and planners at times of emergencies. Thus, they should be informed about these challenges to strengthen the health-care system.

Assessing the health information source perceptions of tweens using card-sorting exercises

2017 ◽  
Vol 44 (2) ◽  
pp. 148-164 ◽  
Author(s):  
Beth St. Jean ◽  
Natalie Greene Taylor ◽  
Christie Kodama ◽  
Mega Subramaniam
Keyword(s):  
Health Information ◽  
Information Needs ◽  
Information Quality ◽  
Formal Education ◽  
Information Source ◽  
After School ◽  
Future Research ◽  
Card Sorting ◽  
School Students ◽  
Sources Of Health Information

As young people are increasingly turning to the Internet to meet their information needs, it is imperative to investigate their perceptions regarding various potential sources of health information. A series of card-sorting exercises were administered to new participants in an after-school programme (HackHealth) to find out which sources of health information these greater Washington DC metro area middle school students would turn to, which they would not and their reasons behind these judgements. The findings revealed that participants were very aware of the importance of trustworthiness when looking for health information and they valued both professional expertise based on formal education and expertise born of personal experience with a particular health condition. However, they also valued convenience, ease and speed, and sometimes sacrificed information quality. Some important implications of these findings for healthcare and information professionals are identified and suggestions for future research in this area are offered.

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