bims-librar Biomed News on Biomedical librarianship
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1. Health sciences libraries in Germany: new directions.
2. The Robert and Lilian Lindsay Library - Part one: in search of a home.
3. Data libraries: the missing element for modeling biological systems.
4. Talking about Dr. Google: Communication strategies used by nurse
practitioners and patients with inflammatory bowel disease in the
Netherlands to discuss online health information.
5. DISNET: a framework for extracting phenotypic disease information from
public sources.
6. DL4papers: a deep learning approach for the automatic interpretation
of scientific articles.
7. Comparing Different Methods for Named Entity Recognition in Portuguese
Neurology Text.
8. Quality of available internet information regarding IV sedation for
dental treatment.
9. A study on users' preference towards diabetes-related video clips on
YouTube.
10. Is Information for Surgically Assisted Rapid Palatal Expansion
Available on YouTube Reliable?
11. Quantitative readability analysis of websites providing information
on traumatic brain injury and epilepsy: A need for clear communication.
12. The reliability of Deep Brain Stimulation YouTube videos.
13. Online Information for Treatment for Low-Risk Thyroid Cancer:
Assessment of Timeliness, Content, Quality, and Readability.
14. Plastic Surgery on YouTube.
15. Information seeking behavior and perceived health literacy of family
caregivers of persons living with a chronic condition. The case of spinal
cord injury in Switzerland.
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Health Info Libr J. 2020 Feb 25.
1. Health sciences libraries in Germany: new directions.
Knüttel H, Krause E, Semmler-Schmetz M, Reimann I, Metzendorf MI
This feature is part of a series about medical library services in various
countries. It gives an overview of the state of and selected current
developments of medical library services to support research, education and
clinical practice in Germany. Findings from an online survey and issues of
access to health information are discussed in relation to the German health
care system.J.M.
Keywords: Europe, central; access to information; health science;
librarianship, libraries, health care; library services
DOI: https://doi.org/10.1111/hir.12299
URL: http://pubmed.ncbi.nlm.nih.gov/32096587
Br Dent J. 2020 Feb;228(4): 297-305
2. The Robert and Lilian Lindsay Library - Part one: in search of a home.
Nield H
A history of the BDA Library from its beginnings up to the move to its
current home in 64 Wimpole Street. In its centenary year of 2020, this
article looks back and reflects on how the library was first thought of, its
inception and growth under the nurturing hand of its Honorary Librarian,
Lilian Lindsay, and through its move from 23 Russell Square to 13 Hill
Street and the tribulations of the Second World War. The development of the
Robert and Lilian Lindsay Library is then followed post-war when its first
full-time professionally qualified librarian was engaged, through the
tribulations of the late 1950s into the 1960s and the safe hands of Muriel
Spencer, who brought the collection to its specifically designed area at 64
Wimpole Street.
DOI: https://doi.org/10.1038/s41415-020-1303-6
URL: http://pubmed.ncbi.nlm.nih.gov/32112024
FEBS J. 2020 Feb 25.
3. Data libraries: the missing element for modeling biological systems.
Baryshnikova A
The primary bottleneck in understanding and modeling biological systems is
shifting from data collection to data analysis and integration. This process
critically depends on data being available in an organized form, so that
they can be accessed, understood and reused by a broad community of
scientists. A proven solution for organizing data is literature curation
which extracts, aggregates and distributes findings from publications. Here,
I describe the benefits of extending curation practices to datasets,
especially those that are not deposited in centralized databases. I argue
that dataset curation (or "data librarianship" as I suggest we call it) will
overcome many barriers in data visibility and reusability and make a unique
contribution to integration and modeling.
Keywords: Systems biology; curation; databases; librarianship; modeling;
omics
DOI: https://doi.org/10.1111/febs.15261
URL: http://pubmed.ncbi.nlm.nih.gov/32100391
Patient Educ Couns. 2020 Jan 20. pii: S0738-3991(20)30038-0.
4. Talking about Dr. Google: Communication strategies used by nurse
practitioners and patients with inflammatory bowel disease in the
Netherlands to discuss online health information.
Linn AJ, Schouten BC, Sanders R, van Weert JCM, Bylund CL
OBJECTIVE: This study explores how patients with Inflammatory Bowel Disease
(IBD) and nurse practitioners (NPs) in the Netherlands communicate about
online health information-seeking.
METHODS: We analyzed 165 consultations of patients at the start of
maintenance treatment using grounded theory. Consultations in which the
words; internet, website, Google, Googled, webpages, online
(forum/blog/platform) or a website was mentioned, were included. Segments
were identified and analyzed that represented a discussion about online
health information-seeking (n = 87). We coded the initiator, initiation and
reaction communication strategy.
RESULTS: Half of the sample was female, most patients were moderately to
highly educated and aged on average 48 years. One third of the consultations
included a discussion about online health information-seeking. Seventeen
communication initiation and reactions strategies were identified. Patients
and NPs were equally as likely to initiate a neutral discussion about online
health information-seeking. Patients repeatedly reacted with disclosing
their concerns. NPs responded by taking patients' online health
information-seeking seriously or affirming patients' beliefs.
CONCLUSION: This exploration makes a unique contribution by demonstrating
that NPs particularly adopt a patient-centered communication style while
communicating about patients' online health information-seeking.
PRACTICE IMPLICATIONS: Results of this study could guide interventions to
train providers in talking about patients' online health information-seeking.
Keywords: Medication; Online health information-seeking; Patient
education; Patient-provider communication; Qualitative research
DOI: https://doi.org/10.1016/j.pec.2020.01.011
URL: http://pubmed.ncbi.nlm.nih.gov/32098743
PeerJ. 2020 ;8 e8580
5. DISNET: a framework for extracting phenotypic disease information from
public sources.
Lagunes-García G, Rodríguez-González A, Prieto-Santamaría L, García Del
Valle EP, Zanin M, Menasalvas-Ruiz E
Background: Within the global endeavour of improving population health, one
major challenge is the identification and integration of medical knowledge
spread through several information sources. The creation of a comprehensive
dataset of diseases and their clinical manifestations based on information
from public sources is an interesting approach that allows one not only to
complement and merge medical knowledge but also to increase it and thereby
to interconnect existing data and analyse and relate diseases to each other.
In this paper, we present DISNET (http://disnet.ctb.upm.es/), a web-based
system designed to periodically extract the knowledge from signs and
symptoms retrieved from medical databases, and to enable the creation of
customisable disease networks.
Methods: We here present the main features of the DISNET system. We describe
how information on diseases and their phenotypic manifestations is extracted
from Wikipedia and PubMed websites; specifically, texts from these sources
are processed through a combination of text mining and natural language
processing techniques.
Results: We further present the validation of our system on Wikipedia and
PubMed texts, obtaining the relevant accuracy. The final output includes the
creation of a comprehensive symptoms-disease dataset, shared (free access)
through the system's API. We finally describe, with some simple use cases,
how a user can interact with it and extract information that could be used
for subsequent analyses.
Discussion: DISNET allows retrieving knowledge about the signs, symptoms and
diagnostic tests associated with a disease. It is not limited to a specific
category (all the categories that the selected sources of information offer
us) and clinical diagnosis terms. It further allows to track the evolution
of those terms through time, being thus an opportunity to analyse and
observe the progress of human knowledge on diseases. We further discussed
the validation of the system, suggesting that it is good enough to be used
to extract diseases and diagnostically-relevant terms. At the same time, the
evaluation also revealed that improvements could be introduced to enhance
the system's reliability.
Keywords: Disease understanding; Disnet framework; Natural language
processing; Phenotypic information; Public sources
DOI: https://doi.org/10.7717/peerj.8580
URL: http://pubmed.ncbi.nlm.nih.gov/32110491
Bioinformatics. 2020 Feb 24. pii: btaa111. [Epub ahead of print]
6. DL4papers: a deep learning approach for the automatic interpretation
of scientific articles.
Bugnon L, Yones C, Raad J, Gerard M, Rubiolo M, Merino G, Pividori M, Di
Persia L, Milone DH, Stegmayer G
MOTIVATION: In precision medicine, next-generation sequencing and novel
preclinical reports have led to an increasingly large amount of results,
published in the scientific literature. However, identifying novel
treatments or predicting a drug response in, for example, cancer patients,
from the huge amount of papers available remains a laborious and challenging
work. This task can be considered a text mining problem that requires
reading a lot of academic documents for identifying a small set of papers
describing specific relations between key terms. Due to the infeasibility of
the manual curation of these relations, computational methods that can
automatically identify them from the available literature are urgently
needed.
RESULTS: We present DL4papers, a new method based on deep learning that is
capable of analyzing and interpreting papers in order to automatically
extract relevant relations between specific keywords. DL4papers receives as
input a query with the desired keywords, and it returns a ranked list of
papers that contain meaningful associations between the keywords. The
comparison against related methods showed that our proposal outperformed
them in a cancer corpus. The reliability of the DL4papers output list was
also measured, revealing that 100% of the first two documents retrieved for
a particular search have relevant relations, in average. This shows that our
model can guarantee that in the top-2 papers of the ranked list, the
relation can be effectively found. Furthermore, the model is capable of
highlighting, within each document, the specific fragments that have the
associations of the input keywords. This can be very useful in order to pay
attention only to the highlighted text, instead of reading the full paper.
We believe that our proposal could be used as an accurate tool for rapidly
identifying relationships between genes and their mutations, drug responses
and treatments in the context of a certain disease. This new approach can
certainly be a very useful and valuable resource for the advancement of the
precision medicine field.
AVAILABILITY AND IMPLEMENTATION: A web-demo is available at:
http://sinc.unl.edu.ar/web-demo/dl4papers/. Full source code and data are
available at: https://sourceforge.net/projects/source
sinc/files/dl4papers/.
DOI: https://doi.org/10.1093/bioinformatics/btaa111
URL: http://pubmed.ncbi.nlm.nih.gov/32091584
J Med Syst. 2020 Feb 28. 44(4): 77
7. Comparing Different Methods for Named Entity Recognition in Portuguese
Neurology Text.
Lopes F, Teixeira C, Gonçalo Oliveira H
Electronic Medical Records (EMRs) are written in an unstructured way, often
using natural language. Information Extraction (IE) may be used for
acquiring knowledge from such texts, including the automatic recognition of
meaningful entities, through models for Named Entity Recognition (NER).
However, while most work on the previous was made for English, this
experience aimed at testing different methods in Portuguese text, more
precisely, on the domain of Neurology, and take some conclusions. This paper
comprised the comparison between Conditional Random Fields (CRF),
bidirectional Long Short-term Memory - Conditional Random Fields
(BiLSTM-CRF) and a BiLSTM-CRF with residual learning connections, using not
only Portuguese texts from medical journals but also texts from the Coimbra
Hospital and Universitary Centre (CHUC) Neurology Service. Furthermore, the
performances of BiLSTM-CRF models using word embeddings (WEs) trained with
clinical text and WEs trained with general language texts were compared.
Deep learning models achieved F1-Scores of nearly 83% and 75%, respectively
for relaxed and strict evaluation, on texts extracted from the medical
journal. For texts collected from the Hospital, the same achieved F1-Scores
of nearly 71% and 62%. This work concludes that deep learning models
outperform the shallow learning models and that in-domain WEs get better
results than general language WEs, even when the latter are trained with
much more text than the former. Furthermore, the results show that it is
possible to extract information from Hospital clinical texts with models
trained with clinical cases extracted from medical journals, and thus openly
available. Nevertheless, such results still require a healthcare technician
to check if the information is well extracted.
Keywords: Machine learning; Named entity recognition; Natural language
processing; Portuguese clinical text
DOI: https://doi.org/10.1007/s10916-020-1542-8
URL: http://pubmed.ncbi.nlm.nih.gov/32112285
Br Dent J. 2020 Feb;228(4): 279-282
8. Quality of available internet information regarding IV sedation for
dental treatment.
Heggie C, McKernon SL, Gartshore L
Aim Evaluate the content and quality of internet information for patients
regarding intravenous sedation in dentistry.Methodology Google was queried
with predefined search terms that might be chosen by patients wishing to
seek information: 'dental IV sedation OR dental intravenous sedation OR
dental sedation'. The first hundred search results were identified. Invalid
hyperlinks and duplicates were excluded. Providers, format and location of
information were extracted. For webpages detailing treatment options, the
DISCERN instrument and JAMA benchmark were used to determine the quality of
the information provided.Results Of the first hundred search results, 89
webpages met the initial inclusion criteria. A majority (79%) originated
from dental providers. Information was commonly presented as patient
information leaflets. Of the 78 webpages detailing treatment options, 3% of
webpages received a maximum DISCERN score of 5 and 64% a score of 1. No
webpages fulfilled all JAMA criteria and 89% met only one criterion.
Secondary care providers scored higher in both scales; however, this
represents only 5% of the information available.Conclusion The internet is a
commonly accessed information resource for patients. The quality of internet
information available regarding intravenous sedation in dentistry is
suboptimal. There is a need for more high-quality information resources.
DOI: https://doi.org/10.1038/s41415-020-1258-7
URL: http://pubmed.ncbi.nlm.nih.gov/32112021
BMC Med Inform Decis Mak. 2020 Feb 28. 20(1): 43
9. A study on users' preference towards diabetes-related video clips on
YouTube.
Zhang J, Zheng Z, Wang Y, Zhu Y
BACKGROUND: Social media has arisen to be a new and important channel for
information users for seeking and creating user-generated content. For
health consumers, social media has long been regarded and employed as an
important source to find health-related information and emotional support.
This study investigated the characteristics of diabetes-related videos
posted on YouTube, one of the most popular video-based social media
platforms, and explored the factors influencing users' preference towards
the investigated videos.
METHODS: A mixed research method including coding and negative binomial
regression test was applied. Coding was utilized to identify the status of
the diabetes-related video clips and the factors related to users' attitude
to them. Negative binomial regression approach was employed to detect
significant relationships among the factors and users' attitude.
RESULTS: The researchers selected eight factors (e.g. number of views, post
period, presenters' gender, and subject) to represent the characteristics of
the diabetes-related video clips. Eleven subjects were identified by
examining the diabetes-related videos and three subjects, Treatment, Sign &
Symptom, and Social & Culture, appeared the most frequently. Media type,
presentation setting, post period, presenter role, and presenters' gender
affect the users' positive attitude significantly. Post period, presenter
role, and the Sign & Symptom subject and the Nutrient subject have
significant influence on the users' negative attitude.
CONCLUSIONS: Treatment, Sign & Symptom, and Social & Culture are the most
popular subjects of the investigated video clips. The users are less likely
to show their attitude to old videos. They prefer journalists and patients
on videos but dislike male presenters compared with other presenters, and
show more negative attitude towards the videos about nutrients. The findings
of this study can be used to enhance the content creation of
diabetes-related video clips for video contributors, the design and
organization of the diabetes-related content for multimedia-based social
media Website designers, and the information seeking and communication among
health information users.
Keywords: Content evaluation; Diabetes; User behavior; Video-based social
media; YouTube
DOI: https://doi.org/10.1186/s12911-020-1035-1
URL: http://pubmed.ncbi.nlm.nih.gov/32111208
J Oral Maxillofac Surg. 2020 Jan 27. pii: S0278-2391(20)30082-3.
10. Is Information for Surgically Assisted Rapid Palatal Expansion
Available on YouTube Reliable?
Hatipoğlu Ş, Gaş S
PURPOSE: The purpose of the present study was to assess the quality and
accuracy of the information provided by YouTube videos related to surgically
assisted rapid palatal expansion (SARPE).
MATERIALS AND METHODS: In the present cross-sectional research, a systematic
exploration of YouTube videos on SARPE was performed using the search phrase
surgically assisted rapid palatal expansion (SARPE) in Google Trends. The
first 200 videos were viewed, and 132 videos were included in the present
study. The demographic data of the videos, including type, source, duration,
date of upload, interaction index, and viewing rates, were recorded. Low-,
moderate-, and high-content video groups were classified using a 22-point
score scale for classification of the video content. Evaluation of the
quality of videos was assessed using the video information and quality index
(VIQI).
RESULTS: We graded 34 videos as having moderate and 98 as having low
content. We found no high-content videos. Individual (vs corporate or
professional) providers had uploaded most of the videos (94.7%). The topics
most mentioned were facial changes/gap/smile (65.9%), swallowing/eating
performance/diet (56.1%), swelling (49.2%), and pain (44.7%). Prognosis and
survival (0.8%) and cost (3%) were the least mentioned. The moderate content
scores for procedure, instructions, indications, advantages, complications,
cost, pain, swelling, bruising, bleeding, tongue soreness, speech,
swallowing/eating performance/diet, psychological and psychosocial impact,
facial changes, pressure, breathing, and numbness were greater than the low
content scores. The VIQI total scores were significantly greater in the
moderate content category than in the low (P < .05).
CONCLUSIONS: Although various videos concerning SARPE are available on
YouTube, the quality of the content of the videos in our sample was
generally low. Specialists performing SARPE procedures should be aware of
the information currently available on the Internet and actively direct
their patients toward the most accurate and up-to-date sites.
DOI: https://doi.org/10.1016/j.joms.2020.01.013
URL: http://pubmed.ncbi.nlm.nih.gov/32087120
Epilepsia. 2020 Feb 24.
11. Quantitative readability analysis of websites providing information
on traumatic brain injury and epilepsy: A need for clear communication.
Correa DJ, Milano L, Kwon CS, Jetté N, Dlugos D, Harte-Hargrove L, Pugh MJ,
Smith JK, Moshé SL
OBJECTIVE: The use of the Internet for health-related questions is
increasing, but it is not clear whether individuals can understand the
information available online. Most health organizations recommend that
health educational materials (HEMs) be written below the sixth grade reading
level. This study was designed to evaluate the readability level of
available online HEMs pertaining to traumatic brain injury (TBI), epilepsy,
and posttraumatic epilepsy (PTE).
METHODS: This cross-sectional readability assessment included HEMs from TBI
and epilepsy stakeholder organizations and those obtained from four Internet
searches. The search strategy was designed to replicate a nonmedical
individual's keyword searches. Each HEM was assessed with an online
automated readability tool using three indices (Flesch Reading Ease Score,
Flesch-Kincaid Grade Level, and Simple Measure of Gobbledygook). Findings
were compared as a function of organization type (journalistic news or
health organization), targeted medical condition (TBI, epilepsy, or PTE), or
content topic (patient health education, clinical research education, or
both).
RESULTS: Readability analysis of 405 identified HEMs revealed scores above
the sixth grade reading level recommendation. Only 6.2% of individual HEMs
met the sixth grade recommendation. Journalistic news organizations' HEMs
had similar readability levels to health organizations' HEMs. PTE-related
HEMs required the highest readability level, >11th grade (P < .001). There
were significant differences in the readability scores (P < .01 for all
indices) among HEMs with information on health education, research
education, or both topics. The highest required readability level (>12 grade
level) was for HEMs that included both health and research education.
SIGNIFICANCE: The majority of TBI-, epilepsy-, and PTE-related online HEMs
do not meet the sixth grade reading recommendation. Improving the
readability of HEMs may advance health literacy around TBI, epilepsy, and
PTE, leading to more effective participant recruitment/retention strategies
for future antiepileptogenesis trials in persons with TBI and perhaps better
patient-centered outcomes.
Keywords: community health; health literacy; plain language; posttraumatic
epilepsy; readability
DOI: https://doi.org/10.1111/epi.16446
URL: http://pubmed.ncbi.nlm.nih.gov/32096225
J Clin Neurosci. 2020 Feb 21. pii: S0967-5868(19)32366-5.
12. The reliability of Deep Brain Stimulation YouTube videos.
Tripathi S, ReFaey K, Stein R, Calhoun BJ, Despart AN, Brantley MC, Grewal
SS, Quinones-Hinojosa A, Wharen RE
BACKGROUND: Deep Brain Stimulation (DBS) was approved by the FDA in the
1990s and is used to treat a variety of movement disorders. Patients are
increasingly turning to the internet for information regarding their
ailments. In this study, we aim to evaluate the accuracy and reliability of
information presented in DBS-related YouTube videos.
METHODS: Using the "Relevance-Based Ranking" strategy for analysis we
assessed the first 3 pages of YouTube for each of the following keywords:
"Deep Brain Stimulation", "DBS", "DBS for Parkinson's disease", "DBS for
essential tremor", and "DBS for movement disorders". Four independent
healthcare personnel evaluated the videos' education quality and
informational material using the validated DISCERN tool.
RESULTS: Our study found that only 24% of the 42 published videos analyzed
scored above a 3 on the DISCERN scoring scale (considered a "good" video).
The search term "Deep Brain Stimulation" had the highest percentage of good
videos (DISCERN > 3) (32%). We also found that the duration of videos was
longer for the "good" videos (Good = 25.6 min vs Unhelpful = 3.0 min,
P = 0.01).
CONCLUSION: YouTube is one of the largest video platforms; the uploaded
videos lack reliability and institutional oversight by the experts. We
believe that medical institutions should explore this way of communicating
to patients by publishing evidence-based and informative videos on diseases
and their management. As it is imperative that the medical field advance to
combat medical misinformation.
Keywords: DBS; Deep Brain Stimulation; Parkinson Disease; Patient
education; Quality of life; YouTube
DOI: https://doi.org/10.1016/j.jocn.2020.02.015
URL: http://pubmed.ncbi.nlm.nih.gov/32094069
J Cancer Educ. 2020 Feb 27.
13. Online Information for Treatment for Low-Risk Thyroid Cancer:
Assessment of Timeliness, Content, Quality, and Readability.
Doubleday AR, Novin S, Long KL, Schneider DF, Sippel RS, Pitt SC
The Internet is a key source of health information, yet little is known
about resources for low-risk thyroid cancer treatment. We examined the
timeliness, content, quality, readability, and reference to the 2015
American Thyroid Association (ATA) guidelines in websites about thyroid
cancer treatment. We identified the top 60 websites using Google, Bing, and
Yahoo for "thyroid cancer." Timeliness and content analysis identified
updates in the ATA guidelines (n = 6) and engaged a group of stakeholders to
develop essential items (n = 29) for making treatment decisions. Website
quality and readability analysis used 4 validated measures: DISCERN; Journal
of the American Medical Association (JAMA) benchmark criteria; Health on the
Net Foundation certification (HONcode); and the Suitability Assessment of
Materials (SAM) method. Of the 60 websites, 22 were unique and investigated.
Content analysis revealed zero websites contained all updates from the ATA
guidelines and rarely (18.2%) referenced them. Only 31.8% discussed all 3
treatment options: total thyroidectomy, lobectomy, and active surveillance.
Websites discussed 28.2% of the 29 essential items for making treatment
decisions. Quality analysis with DISCERN showed "fair" scores overall. Only
29.9% of the JAMA benchmarks were satisfied, and 40.9% were HONcode
certified. Readability analysis with the SAM method found adequate
readability, yet 90.9% scored unsuitable in literacy demand. The overall
timeliness, content, quality, and readability of websites about low-risk
thyroid cancer treatment is fair and needs improvement. Most websites lack
updates from the 2015 ATA guidelines and information about treatment options
that are necessary to make informed decisions.
Keywords: American Thyroid Association; DISCERN; Health on the Net
Foundation certification (HONcode); Internet resources; Journal of the
American Medical Association (JAMA) benchmark criteria; Shared
decision-making; Suitability Assessment of Materials (SAM); Thyroid Cancer
DOI: https://doi.org/10.1007/s13187-020-01713-5
URL: http://pubmed.ncbi.nlm.nih.gov/32108292
Plast Reconstr Surg Glob Open. 2020 Jan;8(1): e2586
14. Plastic Surgery on YouTube.
Almarghoub MA, Alghareeb MA, Alhammad AK, Alotaibi HF, Kattan AE
YouTube is the most accessed video website in the world. It hosts a variety
of medical content. Plastic surgery-related content on YouTube has not been
investigated before. In this study, we analyzed the most prevalent plastic
surgery-related content available on YouTube.
Methods: Search terms were selected to cover the broad topics of plastic
surgery. The top 20 most-viewed videos returned for each search term were
analyzed. The videos were classified by the type of content, authorship,
number of views, and number of likes. Data were collected and analyzed using
Microsoft Excel (2016) program.
Results: Out of the 280 videos analyzed, "patient experience" was the most
prevalent content type. Thirty percent of the analyzed videos were uploaded
by medical centers, and 29% were uploaded from personal accounts.
Educational video content constituted 6% of the total videos analyzed.
Entertainment was the most prevalent (60%) content type returned when
"plastic surgery" was used as the search term.
Conclusions: YouTube is an underutilized social media platform by plastic
surgeons. The entertainment industry is taking advantage of the social media
platform to attract and gain millions of views. Educational videos are low
in number and quality.
DOI: https://doi.org/10.1097/GOX.0000000000002586
URL: http://pubmed.ncbi.nlm.nih.gov/32095397
Patient Educ Couns. 2020 Feb 17. pii: S0738-3991(20)30095-1.
15. Information seeking behavior and perceived health literacy of family
caregivers of persons living with a chronic condition. The case of spinal
cord injury in Switzerland.
Diviani N, Zanini C, Jaks R, Brach M, Gemperli A, Rubinelli S
OBJECTIVE: To examine the information seeking behavior and health literacy
of caregivers of individuals living with spinal cord injury in Switzerland
and their impact on the caregiving experience.
METHODS: Nationwide survey of family caregivers of people with spinal cord
injury (N = 717). Caregivers aged 18+ who assisted with activities of daily
living were included. Self-reported information seeking behavior, including
topics, preferred sources, and health literacy were assessed and analyzed.
RESULTS: Health professionals were the most trusted source of information.
Among information-seekers, higher health literacy levels were shown to be
associated with lower subjective caregiver burden and, in turn, with higher
caregivers' satisfaction with own health.
CONCLUSION: Caregivers use information on different topics and coming from
different sources. In order for information to improve the caregiving
experience, however, caregivers need health literacy skills to make sense of
it.
PRACTICE IMPLICATIONS: Building health literacy is a promising approach to
support caregivers in their activities, reduce their subjective burden, and
even to improve their health. Interventions should consider involving health
professionals, as the most trusted source of information, and address both
health-related and more practical issues.
Keywords: Caregiver burden; Caregiver outcomes; Family caregivers; Health
literacy; Information seeking; Paraplegia; Tetraplegia
DOI: https://doi.org/10.1016/j.pec.2020.02.024
URL: http://pubmed.ncbi.nlm.nih.gov/32098740
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