scholarly journals Unmet Information Needs Among Hispanic Women With Thyroid Cancer

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. A873-A874
Author(s):  
Debbie W Chen ◽  
David Reyes-Gastelum ◽  
Sarah T Hawley ◽  
Lauren P Wallner ◽  
Ann S Hamilton ◽  
...  
Keyword(s):  
Thyroid Cancer ◽  
Health Literacy ◽  
Information Needs ◽  
Medical Information ◽  
Hispanic Women ◽  
Internet Access ◽  
Information Resources ◽  
Low Health Literacy ◽  
Access Information ◽  
Level Of Acculturation

Abstract Background: Despite thyroid cancer being the second most common cancer in Hispanic women, little is known about access to and utilization of medical information resources by Hispanic women with thyroid cancer. Methods: Hispanic women who had diagnoses of thyroid cancer reported to the Los Angeles Surveillance Epidemiology and End Results (SEER) registry in 2014-2015, and who had previously completed our thyroid cancer survey in 2017-2018, were offered follow-up surveys in both English and Spanish (N=273; 80% response rate). Acculturation, which is the process by which individuals adopt the language, values, attitudes, and behaviors of a different culture, was assessed with the Short Acculturation Scale for Hispanics (SASH). Health literacy was assessed with the validated single-item question of “How confident are you filling out medical forms by yourself?” with response categories based on a five-point Likert scale from “extremely” to “not at all”. Patients were also asked about their internet access, information resources used, and ability to access medical information about thyroid cancer in their preferred language. We generated descriptive statistics for all categorical variables and used Rao-Scott adjusted chi-square tests to test for a relationship between level of acculturation and the following variables: health literacy, internet access, information resources used, and ability to access information. Results: Participants’ median age at diagnosis was 47 years (range 20-79); 49% were low-acculturated, 25% had low health literacy, and 14% reported no internet access at home. Low-acculturated Hispanic women reported using information resources in both English and Spanish whereas high-acculturated women used resources in English only. Hispanic women were more likely to report the ability to access medical information about thyroid cancer all of the time if they preferred information in English compared to if they preferred it in Spanish (89% vs 37%, P<0.001). Low-acculturated (vs high-acculturated) Hispanic women were more likely to have low health literacy (47% vs 5%, P<0.001) and to report use of in-person support groups (42% vs 23%, P=0.006). Depending on their level of acculturation, Hispanic women accessed the internet differently (P<0.001) such that low-acculturated women were more likely to use only a smartphone (34% vs 14%) or have no internet access (26% vs 1%), and less likely to use both a smartphone and home computer/tablet (28% vs 58%) or use only a home computer/tablet (10% vs 21%). Conclusion: Our findings demonstrate that low-acculturated Hispanic women with thyroid cancer have greater unmet information needs and access information differently compared to high-acculturated Hispanic women. This study emphasizes the importance of a patient-focused tailored approach to providing medical information to this understudied population.

scholarly journals Unmet Information Needs Among Hispanic Women with Thyroid Cancer

2021 ◽  
Author(s):  
Debbie W Chen ◽  
David Reyes-Gastelum ◽  
Sarah T Hawley ◽  
Lauren P Wallner ◽  
Ann S Hamilton ◽  
...  
Keyword(s):  
Thyroid Cancer ◽  
Health Literacy ◽  
Los Angeles ◽  
Outcome Measures ◽  
Information Needs ◽  
Hispanic Women ◽  
Internet Access ◽  
Survey Study ◽  
Cancer Information ◽  
Access Information

Abstract Context Thyroid cancer is the second most common cancer in Hispanic women. Objective Determine the relationship between acculturation level and unmet information needs among Hispanic women with thyroid cancer. Design Population-based survey study. Participants Hispanic women from Los Angeles Surveillance Epidemiology and End Results registry with thyroid cancer diagnosed in 2014-2015 who had previously completed our thyroid cancer survey in 2017-2018 (N=273; 80% response rate). Main outcome measures Patients were asked about three outcome measures of unmet information needs: 1) internet access, 2) thyroid cancer information resources used, and 3) ability to access information. Acculturation was assessed with the Short Acculturation Scale for Hispanics (SASH). Health literacy was measured with a validated single-item question. Results Participants’ median age at diagnosis was 47 years (range 20-79) and 48.7% were low-acculturated. Hispanic women were more likely to report the ability to access information “all of the time” if they preferred thyroid cancer information in mostly English compared to mostly Spanish (88.5% vs 37.0%, P<0.001). Low-acculturated (vs high-acculturated) Hispanic women were more likely to have low health literacy (47.2% vs 5.0%, P<0.001) and report use of in-person support groups (42.0% vs 23.1%, P=0.006). Depending on their level of acculturation, Hispanic women accessed the internet differently (P<0.001) such that low-acculturated women were more likely to report use of only a smartphone (34.0% vs 14.3%) or no internet access (26.2% vs 1.4%). Conclusions Low-acculturated (vs high-acculturated) Hispanic women with thyroid cancer have greater unmet information needs, emphasizing importance of patient-focused approaches to providing medical information.

scholarly journals Validation of the English and Spanish Mammography Beliefs and Attitudes Questionnaire

2011 ◽  
Vol 16 (2) ◽  
Author(s):  
Gloria Lopez-McKee ◽  
Julia Bader
Keyword(s):  
Health Literacy ◽  
Research Program ◽  
Mammography Screening ◽  
White Women ◽  
Hispanic Women ◽  
Psychometric Testing ◽  
The United States ◽  
Screening Participation ◽  
Low Health Literacy ◽  
Beliefs And Attitudes

Breast cancer is the leading cause of cancer deaths among Hispanic women in the United States. Unfortunately Hispanic women exhibit poor mammography screening participation, are diagnosed at later stages of the disease, and have lower survival rates than non-Hispanic white women. Several cultural and psycho-social factors have been found to influence mammography screening participation among Hispanic women. We will begin by presenting the theoretical framework that grounded this research program to develop an instrument to assess factors contributing to poor mammography participation among Hispanic women. We will also summarize the early stages in the development of the English and Spanish Mammography Beliefs and Attitudes Questionnaire (MBAQ and SMBAQ) for use with low-health-literacy Mexican-American women. Next we will describe the initial psychometric testing of the MBAQ/SMBAQ, after which we will present the psychometric testing of the SMBAQ with low-health-literacy women. This will be followed by a discussion of the modification of the MBAQ and SMBAQ subscales. We’ll conclude with a discussion of the instruments and share our assessment regarding the limitations of this research program, where the program stands to date, and the implications for practice and future research.

scholarly journals Design and preliminary evaluation of a newly designed patient-friendly discharge letter – a randomized, controlled participant-blind trial

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Christian Smolle ◽  
Christine Maria Schwarz ◽  
Magdalena Hoffmann ◽  
Lars-Peter Kamolz ◽  
Gerald Sendlhofer ◽  
...  
Keyword(s):  
Health Literacy ◽  
Medical Information ◽  
Healthcare Services ◽  
Preliminary Evaluation ◽  
Patient Comprehension ◽  
Low Health Literacy ◽  
Discharge Letter ◽  
Medical Undergraduates ◽  
The Impact ◽  
Better Than

Abstract Background Low health literacy has been associated with poor health outcome and impaired use of healthcare services. The hospital discharge letter represents a key source of medical information for patients and can be used to address the problem of low health literacy. The aim of this project was to develop and evaluate a new, patient-directed, version of the discharge letter. Methods Based upon two conventional discharge letters (CDL; one surgical and one medical letter), two new, patient-friendly discharge letters (PFDL) were designed following 5 key principles: short sentences, few abbreviations, large font size, avoidance of technical terms and no more than 4 pages length. Medical undergraduates were randomized into two blinded groups (CDL, PFDL) and asked to assess the assigned letter for the 3 domains structure, content and patient-friendliness. Subsections were rated on a 6-point Likert scale (1 = completely agree, 6 = completely disagree), the results of the survey were compared using the Mann-Whitney-U-Test with a p < 0.05 being the level of significance. Results In total, 74 undergraduates participated in this study. PFDL (35 participants) were rated significantly better than CDL (39 participants) regarding structure (median 1 vs. 2, p = 0.005), content (1 vs. 3, p < 0.001) and patient-friendliness (2 vs. 6, p < 0.001). Of all 17 subsections, PFDL were rated significantly better in 12 cases, and never worse than CDL. Conclusions PFDL were rated significantly better than their CDL counterparts. Medical undergraduates were considered the ideal cohort, not being medical lays and yet unbiased regarding everyday clinical practice procedures. Further tests evaluating the impact of the PFDL on patient comprehension and health literacy are necessary.

Understanding Internet access and use to facilitate patient portal adoption

2016 ◽  
Vol 24 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Prudence W Dalrymple ◽  
Michelle Rogers ◽  
Lisl Zach ◽  
Anthony Luberti
Keyword(s):  
Health Literacy ◽  
Information Seeking ◽  
Positive Attitude ◽  
Internet Access ◽  
Patient Portal ◽  
Health Information Seeking ◽  
Multiple Perspectives ◽  
Major Health ◽  
Low Health Literacy ◽  
Potential Use

Understanding the information-seeking preferences and Internet access habits of the target audiences for a patient portal is essential for successful uptake. The resource must deliver culturally and educationally appropriate information via technology that is accessible to the intended users and be designed to meet their needs and preferences. Providers must consider multiple perspectives when launching a portal and make any needed adjustments once the launch is underway. We report results of a study of 270 parents and caregivers of paediatric patients in a major health system during the process of implementing a patient portal. Through a 26-question paper-and-pencil survey, data were collected on participant demographics, Internet access and use, health information–seeking behaviours, health literacy, and potential use of a patient portal. Results indicate a positive attitude towards portal use but also suggest that low health literacy may be a key issue to portal adoption.

scholarly journals Evaluation of the Long-Term Impact of a Curriculum-Integrated Medical Information Literacy Program

2016 ◽  
Vol 37 (3) ◽  
Author(s):  
Suzanne Maranda ◽  
Brittany Harding ◽  
Laura Kinderman
Keyword(s):  
Medical Students ◽  
Medical School ◽  
Information Literacy ◽  
Information Needs ◽  
Medical Information ◽  
Information Resources ◽  
Literacy Program ◽  
Clinical Questions ◽  
Queen's University ◽  
Long Term Impact

Introduction: Medical libraries have long provided educational programs to support evidence-based practice. Medical students at Queen’s University, Kingston, Ontario, participate in a curriculum-integrated information literacy program during the first two years of medical school. Do they retain, improve, or forget the skills? Do they continue to use the library resources during clerkship? Did they encounter barriers to prevent them from using the resources? Methods: A short survey was administered to 99 students at the end of medical school. The survey included questions about medical students’ attitudes and behaviours, their use of information resources, and their medical information literacy knowledge. Some of the knowledge questions were compared to pre- and post-tests that the same class completed in first year. Results: Fifty-three students completed the survey. The students rated their abilities very highly but there was only a weak positive relationship with the knowledge scores. Information resources were well used, both for clinical questions and to complete the mini-scholar exercises.Discussion: Medical students feel better prepared to answer clinical questions and their skills improved or remained the same for the content that could be compared between first and fourth year. Different resources were used for day-to day information needs and for the completion of the minischolar exercises. The results will inform changes to the Medical Information Literacy program at Queen’s University. The librarians will explore some of the barriers to access to ensure that future students can use information resources with more ease while away from campus.

Hispanics and public libraries

2016 ◽  
Vol 44 (2) ◽  
pp. 85-99 ◽  
Author(s):  
EunYoung Yoo-Lee ◽  
Tamara Rhodes ◽  
Gabriel M. Peterson
Keyword(s):  
Health Literacy ◽  
Health Information ◽  
Information Needs ◽  
Public Libraries ◽  
Public Library ◽  
Consumer Health Information ◽  
The Internet ◽  
Consumer Health ◽  
Content Type ◽  
Low Health Literacy

Purpose The fastest-growing and the largest minority group in the USA, Hispanics are known to have low health literacy because of their limited English proficiency (LEP) and other socio-economic and cultural factors. This paper aims to examine the health information-seeking behaviors of Hispanics in the e-health environment and their use of public libraries as a health information source/service. Design/methodology/approach An interviewer-administered survey was conducted using a semi-structured instrument. The questionnaires inquired about Hispanics’ health information needs, source use and source preference; use of the library for health information needs; and their perceptions and satisfaction about the library’s consumer health information services. A total of 26 Hispanics were recruited from a Hispanic community organization, a public library and an ethnic grocery store in North Carolina. Findings The majority of the participants are foreign born (92.3 per cent) and non-English speakers (84.6 per cent). The internet was the most frequently used source, followed by friends/family, doctors and TV. Eighty-one per cent of the participants were internet users, and most of them (71 per cent) used the internet at home. Only 23 per cent visited a public library to search the internet for health information. Some barriers to using a public library mentioned by the participants include lack of time to visit a library, lack of skills in using the library materials, transportation, LEP, lack of eligibility for a library card, etc. Social implications The findings will be useful for libraries and state/federal health services to evaluate and develop library services suitable for the Hispanics’ consumer health information needs. Originality/value This study is one of a few studies that use an empirical study of a low health literacy ethnic population to examine the possible roles of public libraries in enhancing health literacy.

scholarly journals Evaluation of A Newly Designed Patient-Friendly Discharge Letter – A Randomized, Controlled Participant-Blind Trial

2020 ◽  
Author(s):  
Christian Smolle ◽  
Christine Schwarz ◽  
Magdalena Hoffmann ◽  
Lars-Peter Kamolz ◽  
Gerald Sendlhofer ◽  
...  
Keyword(s):  
Health Literacy ◽  
Medical Information ◽  
Healthcare Services ◽  
Poor Health Outcome ◽  
Patient Comprehension ◽  
Low Health Literacy ◽  
Discharge Letter ◽  
Medical Undergraduates ◽  
The Impact ◽  
Better Than

Abstract Introduction Low health literacy has been associated with poor health outcome and impaired use of healthcare services. The hospital discharge letter represents a key source of medical information for patients and can be used to address the problem of low health literacy. The aim of this project was to develop and evaluate a new, patient-directed, version of the discharge letter.Methods Based upon two conventional discharge letters (CDL; one surgical and one medical letter), two new, patient-friendly discharge letters (PFDL) were designed following 5 key principles: short sentences, few abbreviations, large font size, avoidance of technical terms and no more than 4 pages length. Medical undergraduates were randomized into two blinded groups (CDL, PFDL) and asked to assess the assigned letter for the 3 domains structure, content and patient-friendliness. Subsections were rated on a 6-point Likert scale (1=completely agree, 6=completely disagree), the results of the survey were compared using the Mann-Whitney-U-Test with a p < 0.05 being the level of significance.Results In total, 74 undergraduates participated in the study. PFDL (35 participants) were rated significantly better than CDL (39 participants) regarding structure (median 1 vs. 2, p=0.005), content (1 vs. 3, p<0.001) and patient-friendliness (2 vs. 6, p<0.001). Of all 17 subsections, PFDL were rated significantly better in 12 cases, and never worse than CDL.Conclusion PFDL were rated significantly better than their CDL counterparts. Medical undergraduates were considered the ideal cohort, not being medical lays and yet unbiased regarding everyday clinical practice procedures. Further tests evaluating the impact of the PFDL on patient comprehension and health literacy are necessary.

scholarly journals Investigating the Use and Non-Use of Online Information Resources Among Cancer Patients: A Qualitative Study

2021 ◽  
Author(s):  
Zahraa Ahmad Abul ◽  
Abbas Alsalman
Keyword(s):  
Cancer Patients ◽  
Health Care Professionals ◽  
Information Seeking ◽  
Information Needs ◽  
Health Knowledge ◽  
Information Resources ◽  
Online Information ◽  
Cancer Stage ◽  
Low Health Literacy ◽  
Seeking Behavior

This research focuses on examining the use and non-use of information resources among cancer patients. Non-seekers’ information-seeking behavior is analyzed in this research to determine the causes and symptoms of their non-seeking of health knowledge. Cancer patients use a variety of information resources such as the Internet, social media, and medical databases, in order to satisfy their needs. Studies showed that patients’ knowledge of their cancer stage might help them in making their care and treatment choices. Focus groups are commonly used in health research to explore the perspectives of patients or health care professionals; relatively few studies consider methodological aspects in this specific context. The purpose of this research is to investigate the information needs of cancer patients, and to find out reasons for the lack of cancer stage knowledge and desire for information after diagnosis. Expected findings include personal, situational, and psychological reasons, such as: low health literacy, low usage of health information, health instructions and the ways to increase patient awareness of the benefits and ways of seeking information.

The Center for International Biomedical Communications Research

1966 ◽  
Vol 05 (03) ◽  
pp. 142-146
Author(s):  
A. Kent ◽  
P. J. Vinken
Keyword(s):  
Information Needs ◽  
English Language ◽  
Medical Information ◽  
Biomedical Literature ◽  
Information Storage ◽  
Control Mechanisms ◽  
University Of Pittsburgh ◽  
The World ◽  
The University ◽  
Excerpta Medica Foundation

A joint center has been established by the University of Pittsburgh and the Excerpta Medica Foundation. The basic objective of the Center is to seek ways in which the health sciences community may achieve increasingly convenient and economical access to scientific findings. The research center will make use of facilities and resources of both participating institutions. Cooperating from the University of Pittsburgh will be the School of Medicine, the Computation and Data Processing Center, and the Knowledge Availability Systems (KAS) Center. The KAS Center is an interdisciplinary organization engaging in research, operations, and teaching in the information sciences.Excerpta Medica Foundation, which is the largest international medical abstracting service in the world, with offices in Amsterdam, New York, London, Milan, Tokyo and Buenos Aires, will draw on its permanent medical staff of 54 specialists in charge of the 35 abstracting journals and other reference works prepared and published by the Foundation, the 700 eminent clinicians and researchers represented on its International Editorial Boards, and the 6,000 physicians who participate in its abstracting programs throughout the world. Excerpta Medica will also make available to the Center its long experience in the field, as well as its extensive resources of medical information accumulated during the Foundation’s twenty years of existence. These consist of over 1,300,000 English-language _abstract of the world’s biomedical literature, indexes to its abstracting journals, and the microfilm library in which complete original texts of all the 3,000 primary biomedical journals, monitored by Excerpta Medica in Amsterdam are stored since 1960.The objectives of the program of the combined Center include: (1) establishing a firm base of user relevance data; (2) developing improved vocabulary control mechanisms; (3) developing means of determining confidence limits of vocabulary control mechanisms in terms of user relevance data; 4. developing and field testing of new or improved media for providing medical literature to users; 5. developing methods for determining the relationship between learning and relevance in medical information storage and retrieval systems’; and (6) exploring automatic methods for retrospective searching of the specialized indexes of Excerpta Medica.The priority projects to be undertaken by the Center are (1) the investigation of the information needs of medical scientists, and (2) the development of a highly detailed Master List of Biomedical Indexing Terms. Excerpta Medica has already been at work on the latter project for several years.

scholarly journals The Voices of Persons Living With Dementia: Exploring Their Information Needs to Live Well

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 60-60
Author(s):  
Michelle Kimzey ◽  
Ramona Baucham ◽  
Chelsea Martin ◽  
Carol Howe
Keyword(s):  
Health Literacy ◽  
Health Information ◽  
Information Needs ◽  
Hybrid Approach ◽  
Convenience Sample ◽  
Health Decisions ◽  
People With Dementia ◽  
Care Partners ◽  
Diagnosis Of Dementia ◽  
Services And Supports

Abstract There are unique challenges and considerations when receiving the diagnosis of dementia. There are interventions, services, and supports for people with dementia and their care partners, yet they are often unknown, disconnected, and may not be widely available or easily accessible. Health literacy was defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Using a descriptive qualitative design, the purpose of this study was to describe how persons living with dementia and their care partners obtain, understand, and use information to make health decisions to live well with dementia. The convenience sample consisted of 28 care partners and 15 people living with dementia participating in 6 separate focus groups. To illuminate findings, data was analyzed using a hybrid approach (deductive followed by inductive). Four themes emerged deductively as persons gain health literacy in dementia (access, understand, appraise, and understand). The notable finding is the trend at diagnosis where they first are “seeking the expert” ,and as they move from dependence and gain understanding they are “becoming the expert”, and finally as they apply information they are “acting as the expert” for themselves and others. Engaging them in research not only gave them a voice but more importantly it influenced the health information that will be developed and implemented by them. These findings suggest there is a wealth of knowledge to be gained by persons living with dementia and their care partners.

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