International Journal of Infectious Diseases 43 (2016) 103–110
Contents lists available at ScienceDirect
International Journal of Infectious Diseases
journal homepage: www.elsevier.com/locate/ijid
Review
Health literacy and infectious diseases: why does it matter?
Enrique Castro-Sánchez a,*, Peter W.S. Chang b, Rafael Vila-Candel c,
Angel A. Escobedo d, Alison H. Holmes a
a
NIHR Health Protection Research Unit in Healthcare Associated Infection and Antimicrobial Resistance at Imperial College London, Hammersmith Campus,
Du Cane Road, London W12 0NN, UK
b
National Taipei Hospital, Ministry of Health and Welfare, Taiwan, Taipei Medical University, Taipei, Taiwan
c
Department of Obstetrics and Gynaecology, Hospital Universitario de la Ribera, Alzira, Valencia, Spain
d
Academic Paediatric Hospital ‘‘Pedro Borrás’’, Havana City, Cuba
A R T I C L E I N F O
Article history:
Received 5 October 2015
Received in revised form 14 December 2015
Accepted 24 December 2015
Corresponding Editor: Eskild Petersen,
Aarhus, Denmark.
Keywords:
Health literacy
Infectious diseases
Health communication
Self-efficacy
S U M M A R Y
Objectives: Multifactorial interventions are crucial to arrest the threat posed by infectious diseases.
Public involvement requires adequate information, but determinants such as health literacy can impact
on the effective use of such knowledge. The influence of health literacy on infectious diseases is
examined in this paper.
Methods: Databases were searched from January 1999 through July 2015 seeking studies reporting on
health literacy and infections such tuberculosis, malaria, and influenza, and infection-related behaviours
such as vaccination and hand hygiene. HIV was excluded, as comprehensive reviews have already been
published.
Results: Studies were found on antibiotic knowledge and use, the adoption of influenza and MMR
immunizations, and screening for sexually transmitted and viral hepatitis infections. There was a lack of
investigations on areas such as tuberculosis, malaria, hand hygiene, and diarrhoeal diseases.
Conclusions: Limited or insufficient health literacy was associated with reduced adoption of protective
behaviours such as immunization, and an inadequate understanding of antibiotics, although the
relationship was not consistent. Large gaps remain in relation to infectious diseases with a high clinical
and societal impact, such as tuberculosis and malaria.
ß 2016 The Authors. Published by Elsevier Ltd on behalf of International Society for Infectious Diseases.
This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/bync-nd/4.0/).
1. Introduction
The planetary scale of the threat presented by infectious diseases
to human health and society has been well described.1 An intricate
arrangement of clinical, societal, and ecological determinants
powers the emergence of new infectious pathogens such as Ebola
virus, and the resurgence of others previously considered to be
under control. These same factors drive the unsustainable use and
consumption of antimicrobials,2 sketching the looming prospect of
a ‘world without antibiotics’ reflected upon by many,3 and without
new therapeutic agents likely to be developed at a sufficient rate
and periodicity to provide a significant counterbalance.
Equally, effective responses to the challenge posed by infectious
diseases require multifactorial components, including not only the
* Corresponding author. Tel.: +44 (0)203 313 2732; fax: +44 (0)208 383 3394.
E-mail address: e.castro-sanchez@imperial.ac.uk (E. Castro-Sánchez).
obvious availability of adequate clinical care but also improvements in the living conditions of citizens and access to education.4
Indeed, enhancing the self-efficacy of citizens to adopt recommended preventive behaviours such as vaccination, and encouraging their engagement in similar public health interventions,
has been recognized as crucial.5 Such public involvement, to
be successful, requires that adequate information and advice be
provided so individuals know what they need to do. However,
different factors influence the ability of citizens to understand the
information provided, follow health instructions and guidance,
and ultimately make effective decisions related to their health
and care. Whilst some of the key aspects seem logical, such as
education and socioeconomic status, other influences such as
health literacy have received limited attention until now. Health
literacy (HL) refers to the ability of people to access and use
information to make decisions related to their health.6 Conceptually, HL has evolved from incorporating functional skills in a
medical setting to being a multidimensional notion that involves
http://dx.doi.org/10.1016/j.ijid.2015.12.019
1201-9712/ß 2016 The Authors. Published by Elsevier Ltd on behalf of International Society for Infectious Diseases. This is an open access article under the CC BY-NC-ND
license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
E. Castro-Sánchez et al. / International Journal of Infectious Diseases 43 (2016) 103–110
104
advanced skills, such as the capacity to influence the health system
and others,7 distinguishing between proficiency in ‘functional’,
‘interactive’, and ‘critical’ facets. Other authors have further
described the HL terrain across health systems in order to identify
similarities and divergences.8
Regardless of the definition selected, it seems unquestionable
that a large proportion of citizens do not have adequate or effective
levels of HL to successfully navigate the increasingly complex
healthcare landscape.9 Several studies have already described
the consequences of such inadequate levels of skills, including a
more limited knowledge of health and social care preventive and
curative services,10 and a higher frequency of hospital admissions
with increased morbidity and mortality.11,12 The mounting
evidence demonstrating the impact of inadequate HL has naturally
led to an increasing interest in developing interventions to provide
support for citizens and reduce the resulting inequalities. Current
perspectives, on the other hand, suggest that concentrating on
identifying those with low HL should be avoided and that instead,
health and social care services should be designed and provided in
a way that ensures that all individuals, regardless of their abilities,
are able to make use of the information and opportunities available
and be empowered to make effective decisions.13,14
As mentioned, the relationship between HL, health outcomes,
and the use of healthcare resources has already been well
established. Some documents have also briefly highlighted the
significance of HL for the outcomes of infections and infectious
diseases. The European Centre for Disease Prevention and Control
(ECDC) has described the role that HL can play regarding infectious
diseases.15 However, and with the exception of HIV/AIDS, there
is a paucity of data and experiences on the relationship and
impact of HL on a variety of clinical and social outcomes from
infectious diseases. This paper reviews the existing evidence on
the interaction between HL and infection, including preventive
behaviours such as vaccination, with the aim of highlighting
research gaps and facilitating the advancement of this emerging
field.
2. Methods
A scoping review of the literature was carried out to identify the
nature and extent of the existing evidence. Scoping reviews, unlike
other types of review, do not attempt to exhaustively assess or
formally evaluate the quality of available research, but rather seek
to identify the contribution of existing literature to an area of
interest.16
2.1. Search strategy
Databases were searched from January 1999 through July
2015. AMED, Excerpta Medica Database (EMBASE), Health
Management Information Consortium (HMIC), British Nursing
Index (BNI), Medline, PsycINFO, CINAHL, and Health Business Elite
databases were interrogated for relevant studies in the English
language. The search items used were tailored to the requirements
of each database, and included combinations of ‘health literacy’
with terms such as ‘tuberculosis’, ‘chlamydia’, ‘gonorrhoea’,
‘bacteraemia’, ‘blood stream infection’, ‘clostridium’, ‘dengue’,
‘influenza’, and ‘sexually transmitted infection’. Figure 1 provides
details of the search strategy used.
2.2. Study inclusion and exclusion criteria
Studies were included if they reported primary research into
the influence or relationship of HL on infectious diseases or selfcare behaviours related to infection avoidance (such as vaccination), or if they described the impact of interventions to increase
or support HL in people diagnosed or treated with infectious
diseases. As infectious diseases are a global health concern, studies
conducted on any healthcare system were included. Studies
focusing on aspects of HIV management and care were excluded, as
recent comprehensive reviews have already been published.17,18
Figure 2 presents the study selection flowchart.
2.3. Data extraction
The data extraction procedure was conducted in two phases: (1)
by title and abstract, and (2) by full text. Following the assessment
of title and abstract, the primary reviewer (ECS) and secondary
reviewer (RVC) performed the full-text evaluation. A third
reviewer (AAE) acted to resolve any disagreements. A standardized
electronic form was used to record the data.
3. Results
Seven hundred and eight references were initially obtained
with the search strategy across all databases, resulting in
505 unique papers after removing duplicates. The screening of
titles and abstracts identified 117 papers suitable for full-text
evaluation. Twenty-seven studies were finally included in this
review.
3.1. Behaviours and knowledge
3.1.1. Antibiotic use
Several studies have reported parental decision-making to be
associated with antibiotics received by children. A 2009 study in
the USA established the relationship between parental HL level, as
measured using two standardized screening tools, and knowledge
and beliefs about upper respiratory infection (URI) care.19 A large
proportion of the 154 Latino parents participating in the study had
inadequate HL levels (between 83% and 35% of parents, depending
on the screening test used to report results). The findings
((health AND literacy) AND ((antibiotic OR antimicrobial) OR bacteraemia OR (blood AND stream
AND infection) OR brucellosis OR campylobacter OR chickenpox OR chlamydia OR Clostridium OR
cholera OR dengue OR escherichia OR giardia OR gonorrhoea OR hepatitis OR herpes OR influenza
OR leprosy OR leptospirosis OR lice OR listeria OR lyme OR lymphogranuloma OR malaria OR
measles OR mumps OR norovirus OR pneumococc* OR polio OR rabies OR rubella OR salmonella
OR (sexually AND transmitted AND infect*) OR shigella OR syphillis OR tuberculosis OR tetanus OR
vaccin*)).ti,ab
Figure 1. Search strategy.
E. Castro-Sánchez et al. / International Journal of Infectious Diseases 43 (2016) 103–110
708 records identified through
database searching
203 duplicates excluded
505 records screened based on
title and abstract
388 irrelevant records excluded
105
117 records included in full-text
evaluation
90 records excluded:
-
Not about HL (74)
Not about infections (12)
No intervention (3)
Not retrievable (1)
27 records included in scoping
review
Figure 2. Study selection flowchart.
highlighted the need to increase and support parental HL to benefit
paediatric healthcare. Depending on the HL screening tool used,
there were discrepancies in the associations between outcomes
and HL scores, which may reflect the focus of each tool on slightly
different dimensions. For example, the Newest Vital Sign (NVS)
suggested a greater likelihood of association between adequate HL
and US birth status, >5 years US residency, and higher antibiotic
knowledge scores. Using the Short Test of Functional Health
Literacy in Adults (S-TOFHLA), on the other hand, resulted in
increased odds of adequate HL associated with access to a regular
healthcare provider. Scores consistent with adequate HL on the
NVS, but not the S-TOFHLA, were associated with correct beliefs
regarding antibiotic use for URIs in comparison to scores of
participants with inadequate HL.
Another study centred on the perceptions of Latino parents
regarding URIs and their treatment evaluated the impact of a pilot
community-based HL intervention, achieving increases in knowledge and attitudes as well as self-reported care practices.20 As with
other interventions focused on knowledge, its impact on the
sustainability of any effect remains unreported.
A prospective trial by Olives et al. focused on emergency
department attendees stratified by HL level and their compliance
with outpatient antibiotic therapy and follow-up recommendations.21 The authors used the NVS tool and identified that 23% of
the participants had an NVS score of 0–1 (suggesting low HL),
whilst 46% obtained 4–6 points. In terms of outcomes, no
difference across the different NVS scores was revealed in selfreported medication compliance at 30 days. However, the
proportion of prescriptions filled at 72 h did vary significantly
depending on the HL score.
Finally, the influence of HL and HL-focused clinical practices on
the quality of optimal antibiotic use was reflected in a case study
describing the presentation of Guillain–Barré syndrome, an
uncommon sequela of campylobacteriosis, in a patient previously
treated for the infection. The patient was able to recognize the
symptoms and was promptly able to attend the emergency
services thanks to appropriate education supported by the teachback methodology, a recognized technique aimed at facilitating HL
practices in patients.22
3.1.2. Vaccination-related behaviours
HL appears to be a key determinant in vaccination-related
behaviours,23 in view of the complex information and the multiple
steps involved in the successful adoption of immunization.24 It is
therefore unsurprising that a significant proportion of citizens with
insufficient HL skills remain unvaccinated, and that persons with
low HL are less likely to be vaccinated, if compared to individuals
with adequate HL.25–29
The lack of effective vaccination status has been related to
limited HL, allowing negative ideas or feelings not based on
adequate evidence to influence decision-making about vaccines.
Limited HL can also lead to an overestimation of risks associated
with vaccinations, including the effect of preservatives and
vaccine-booster components.25 Lupattelli et al. investigated the
association of HL with beliefs about the safety and risks of
medications, within the context of suboptimal adherence to
medications prescribed during pregnancy.26 Almost 5000 pregnant
women from different European and North American countries
were recruited through an internet-based tool in 2012, and asked
to provide socio-demographic and clinical information as well as
responses to a non-standardized HL tool. Higher risk perception for
medications, including the swine influenza vaccine developed at
the time, and generalized negative perceptions of medications
were associated with low HL. A quarter of women with low HL
also reported suboptimal adherence to prescribed medications,
compared to just under 20% of those in the high HL group. Overall,
the study elicited a complex picture of non-adherence and
medication beliefs shaping and being shaped by HL.
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E. Castro-Sánchez et al. / International Journal of Infectious Diseases 43 (2016) 103–110
A smaller study identified how the levels of maternal education
were directly associated with Rapid Estimate of Adult Literacy in
Medicine (REALM) scores, influencing decisions to vaccinate
children.27 Once more, HL and education were shown to play a
fundamental role in shaping effective perceptions of vaccine safety
and benefit, suggesting appropriate resources for interventions
to improve vaccination rates in children.
The HL of pregnant women in Jamaica was matched with their
ability to discuss benefits and safety aspects of bacille Calmette–
Guérin (BCG) and hepatitis B virus (HBV) immunizations in the
study by Wilson et al.28 The HL scores were moderately and
positively correlated with an adequate discussion of risks and
benefits. Additionally, the study demonstrated the efficacy of the
teach-back communication technique to increase immunization
literacy among the participants.
Different results were obtained with US mothers when focusing
on infant immunization.29 The S-TOFHLA results were matched
with immunization status results. The group was largely composed
of African American single mothers. HL was inadequate in almost
25% of the participants. However, maternal HL was not significantly associated with the immunization of infants at either 3 or
7 months.
The interventions aimed at improving the skills of low literacy
populations could be used as blueprints to increase immunization
rates in individuals with low HL. For example, researchers in
Karachi managed to increase the completion rates of diphtheria–
polio–tetanus (DPT) and hepatitis immunizations significantly
amongst individuals with low literacy, using simple educational
interventions.30 To remedy such inequalities, low-literacy information tools have been shown to successfully increase vaccination
rates in population groups most likely to be undervaccinated.31
Interestingly, none of the papers reported the paradoxical
relationship observed in other studies between higher socioeconomic and education status and lower vaccination rates.32–34
3.2. Immunizations for vaccine-preventable diseases
3.2.1. Measles/measles–mumps–rubella (MMR)
A forthcoming study reporting in 2016 will survey parents of
adolescents in Switzerland to describe the influence of HL and
related variables on the MMR vaccination status of adolescents,35
with a view to expanding the limited evidence available regarding
the interplay of factors determining decisions of parents to
vaccinate their children36,37 and optimize health communication
campaigns.
3.2.2. Tetanus
A study by researchers in Wisconsin explored the association
between HL and health determinants at the population level.38
More than 1500 individuals were surveyed using the S-TOFHLA to
match literacy scores and the prevalence of self-care measures,
including recent influenza and tetanus immunization. Amongst
other protective care measures, adequate functional HL was not
associated with tetanus vaccination but was associated with recent
influenza immunization.
3.2.3. Influenza
The use of text message reminders with additional HL
information regarding vaccination increased the completion rates
of influenza immunization in children in New York City, compared
with children whose parents received messages with just reminder
information, suggesting a benefit of this low cost intervention
across different literacy groups.39
Bennett et al. focused on the mediating role of HL in disparities
in self-rated health status and preventive behaviours in older
adults.40 The authors assessed the use of three recommended
preventive healthcare services, including influenza vaccination.
The nationally representative sample of more than 2600 US adults
included a large proportion (30%) with a fair or poor health status,
with 27% of them not accessing influenza vaccination. When the
analysis was adjusted for potential confounders, HL was significantly associated with racial and educational disparities and the
use of influenza vaccination.
Bains and Egede investigated the influence of HL on the
adoption of preventive healthcare behaviours and services in a
nationally representative sample of 18 000 US adults.41 Census
information was matched to a national HL assessment survey,
together with influenza and pneumonia vaccinations as outcomes
of interest. HL scores and adequate preventive behaviours were
inconsistently related, in a non-linear fashion. For example, HL
scores were significantly correlated to receiving yearly cervical
cytology examinations, whilst lower HL scores were associated
with increased influenza vaccination.
The multiple interactions between race, education, and HL,
together with certain clinical and healthcare utilization outcomes,
were examined with a view to identifying the relative weight and
contribution of HL to such differences.42 More than 2200 older
adults in different US locations were screened using several
standardized tools, with supplementary information collected on
socio-demographic and economic characteristics, self-reported
health status indicators, and the use of healthcare and preventive
measures. Compared to persons with adequate HL, individuals
with inadequate HL had significantly worse health outcomes and
were significantly less likely to receive influenza vaccination (but
not pneumococcal vaccination). The study found that HL explained
only a small proportion of the differences in health status and, to a
lesser degree, the receipt of vaccinations that would normally be
attributed to educational attainment or race if literacy was not
considered. The results of the study have to be appraised within the
context of the US healthcare system, where the population group
surveyed may have been encouraged to make use of self-care
measures, thus reducing the impact of any HL deficits.
A similar approach was presented in a study identifying the
relationship between HL and the use of preventive services such as
influenza and pneumococcal vaccinations, using the S-TOFHLA as
the screening tool to evaluate more than 2700 older adults in the
USA.43 In that study, the researchers identified low HL as directly
associated with self-reported lack of preventive services. For
example, participants with a low HL were much more likely to have
never received an influenza vaccination (29% vs. 19% in those with
adequate HL; p = 0.0001) or a pneumococcal vaccination (65% vs.
54%; p = 0.0001). The statistically significant differences remained
after adjusting for demographic characteristics, level of education
(as estimated by years of school completed), and income. The
results obtained by White et al. corroborate the lack of significant
association between pneumococcal vaccination and HL level.10
Sudore et al. surveyed 2512 older people in the USA, assessing
their HL using the REALM tool and collecting demographic and
clinical variables together with proxy variables of healthcare
access, including a recent influenza vaccination.44 The results
indicated that study participants in lower literacy categories were
less likely to have received an influenza vaccination in the previous
12 months. This association persisted for the lowest HL category
even after adjusting for social and demographic factors, self-rated
health, and comorbidities.
3.2.4. Polio
The relationship between HL and the ability to discuss health
information related to vaccination (using the inactive poliovirus
(IPV) and the pneumococcal conjugate vaccine (PCV) as examples)
in a small group of mothers was estimated by Wilson et al.45
The authors used a self-care theoretical model to frame the
E. Castro-Sánchez et al. / International Journal of Infectious Diseases 43 (2016) 103–110
hypothetical relationship between HL and vaccine information,
together with the REALM screening tool. Perhaps as expected,
mothers with higher HL demonstrated greater knowledge about
the benefits of polio vaccination, compared to mothers with lower
HL levels. For both IPV and PCV vaccines, risks and benefits were
correctly reported more frequently than safety aspects. The
authors recommended further studies to evaluate how best to
improve the mixed results obtained, increasing and consolidating
parents’ knowledge and communication skills.
3.2.5. Human papillomavirus (HPV)
A very comprehensive mixed-methods study identified the
effect of HL on the decision of US college students to have the HPV
vaccination.46 The study described the application of several
screening tools to the participants, including the extensively used
S-TOFHLA and NVS, as well as the more innovative Cancer Message
Literacy Test-Listening (CMLT-Listening) and eHealth Literacy
Scale, in an attempt to accurately describe the components of HL
that may be at play at the point of making decisions about
vaccination. The study was innovative as it also included in-depth
interviews to triangulate quantitative findings and describe key
social and behavioural determinants of vaccination from the point of
view of participants. Three quarters of the tests were not associated
with the uptake of HPV vaccination, prompting the authors to argue
that studies focusing on single assessment tools might be unlikely
to depict accurately the HL skills of the participants. In spite of
adequate HL skills, the qualitative segment of the study elicited
reasons for vaccination that seemed to be related to compliance
with social desirability (i.e., having a vaccine as being told or advised
to do so by healthcare workers) rather than autonomous and
rational decisions about the benefits of the vaccine.
3.3. Sexually-transmitted and viral hepatitis infections
Needham et al. focused on the influence of HL and comprehension of information about sexually transmitted infections (STIs) on
the sexual behaviour of a cohort of young women attending sexual
and reproductive health services in the USA.47 Lower HL appeared
to be related to lower comprehension of written information, but
women with lower HL, on the other hand, were not more likely to
engage in riskier sexual behaviours.
3.3.1. Gonorrhoea
In one of the very few studies evaluating the relationship of HL
with sexually transmitted infection care, a widely disseminated
and standardized HL screening tool was used to establish the
influence of HL on the likelihood of adoption of a recent gonorrhoea
test by individuals in several US states.48 Among other factors, selfefficacy, younger age, and a high score on the HL screening test
used were independently associated with gonorrhoea testing in
the previous year, with the score screening test alone related to a
10% increase in the probability of having undergone the test. The
results illustrate the impact of HL not just on acquiring STIs, but
also on delaying access to diagnosis, care, and the health
promotion offered in clinics.
3.3.2. Viral hepatitis infection
Chikkana et al. aimed to evaluate the association of functional
HL and treatment outcomes in people living with chronic hepatitis
C virus (HCV) infection in the USA. The 46 participants provided
demographic information and completed a knowledge questionnaire and the S-TOFHLA screening tool. The vast majority of
patients were taking antivirals, and 90% had high HL levels. The
study, however, failed to find any association between HL and HCV
treatment outcomes. As an explanation, the authors attributed
their findings to the characteristics of the population surveyed.49
107
A thesis by Obediah also explored the functional HL as well as
the lived experience of depression and self-efficacy of military
veterans living with HCV in the USA.50 A battery of screening tools
and validated scales including TOFHLA were used. The results did
not establish any statistically significant association between HL
scores and depression or self-care. Among the limitations were the
small sample size, which may have led to the results obtained. The
experience of people living with viral hepatitis infection was also
assessed in the qualitative study by Sriphanlop et al. of factors
related to HBV screening among African individuals in New York
City.51 HL, together with other classic elements such as the
complexity of the US medical system, was predominantly
identified as of key relevance to the migrants.
A couple of initiatives have aimed to resolve HL deficits
identified among people living with viral hepatitis infection. A
computerized patient education programme was developed to
provide information to US women diagnosed with HBV infection
during their pregnancy. The formative intervention also included
traditional face-to-face visits with a clinician and printed
resources.52 Another intervention adopted a novel approach,
developing a dedicated YouTube channel and incorporating HL
together with health communication techniques to facilitate the
understanding of the natural history and pathophysiology of HBV
infection. Knowledge related to the infection increased significantly amongst the participants surveyed.53
3.4. Tuberculosis
Literacy has been identified as one of the key elements of the
‘social infrastructure’ of tuberculosis management and control,54
and several studies have characterized the negative tuberculosis
outcomes associated with illiteracy in Brazil55 and India.56
However, investigations on tuberculosis disease are yet to replicate
the experiences in other health problems evaluating the impact of
HL in clinical and social outcomes. The only research suggesting a
link between HL and tuberculosis infection amongst Latino
patients reviewed the literature related to adherence and used
HL as synonymous with ‘tuberculosis disease knowledge’. In the
conclusion, the authors reported an inadequate HL level in
Hispanics regarding tuberculosis infection, resulting in reduced
concordance with medication.57
4. Discussion
This overview presents the current research overlap between
infectious diseases and HL. The evidence depicts the association
and influence of HL in a variety of infections and infection
prevention-related behaviours. In general, limited or insufficient
HL was found to be associated with the reduced adoption of
protective behaviours such as immunization, and with an adequate
understanding of antibiotic use for the treatment of infections,
although the relationship was not found to be consistent or linear.
Nevertheless, any conclusions have to be appraised in light of
the very reduced and fragmented body of evidence available. A
priori, infectious diseases and immunizations appear ideal
candidate areas to research the interaction with HL, due to the
complexity of decisions involved in self-care measures and the
multiple factors leading to the acquisition or avoidance of
infection. However, the absence of studies related to essential
behaviours such as hand hygiene, and to key health problems such
as tuberculosis, viral hepatitis, and malaria, and dual diagnoses
(tuberculosis/HIV, HIV/HCV), all associated with large clinical,
social, and economic burdens, was remarkable (Table 1). Clearly,
this review is limited by a reliance on the authors of the studies to
identify their research as related to HL. In contrast, several papers
claimed to concentrate on HL, with titles explicitly mentioning HL,
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E. Castro-Sánchez et al. / International Journal of Infectious Diseases 43 (2016) 103–110
Table 1
Infectious diseases and infection prevention areas without health literacy studies
Behaviours and knowledge
Hand hygiene
Sexually transmitted and viral hepatitis infections
Chlamydia
Herpes
Tropical diseases
Malaria
Leprosy
Dengue
Leishmaniasis
Diarrhoeal diseases
Clostridium
Giardiasis
Campylobacter
Cholera
Escherichia coli
Tuberculosis
Tuberculosis disease
but were instead found to discuss ‘disease knowledge’ or
‘education about a disease’ (see for example58–65), lacking any
evaluation of HL using validated tools, or constructing ad hoc
questionnaires.
A further structural inequality emerges from this review,
associated with the disproportionate number of studies carried out
in the USA or focusing on US-based citizens. This inequality is more
evident when contemplating the geographical distribution of the
diseases considered. Such disparity in studies has been identified
previously in reviews about the HL of migrants and displaced
individuals (Castro-Sánchez E. 2nd European Health Literacy
Conference, Denmark 2014). The difference in publications may
be explained by the longer tradition of HL research in the USA, the
lack of a critical mass of researchers and clinicians interested in HL
in low- and middle-income countries, or to perceptions that
literacy and education deficits may be much more powerful
contextual determinants yet to be resolved, therefore reducing the
interest in characterizing HL. However, the different studies
presented in this review have elicited the unique contribution of
HL to negative care outcomes, independently from education.
In addition to the proposed scarcity of academic interest
outside the USA and a minority of other countries, researchers in
settings where some infectious diseases may be much more
prevalent could have difficulties applying screening scales not yet
adapted or validated for such environments.66 A recent World
Health Organization-commissioned toolkit aimed to address such
shortcomings.67 The limited variety of screening tools described in
the studies reviewed was perhaps unexpected, considering the
number of scales already available,68 but it may again simply
reflect the unsuitability of existing surveys to settings outside the
USA, Australia, or England.
The studies reviewed rested on the functional and, to a much
lesser extent, interactive facets of HL. However, the critical
dimension of HL was not considered. This dimension, which
focuses on supporting effective political and social action, seems
markedly relevant in view of contemporary issues affecting access
to effective treatments that are considered prohibitively expensive, such as newer HCV antivirals. The optimal mechanisms to
empower citizens with low literacy to advance from functional HL
to critical HL remain to be identified.
An additional gap in relation to the construction of critical HL is
the lack of papers describing interventions in populations such as
young adults and children, in particularly vulnerable groups such
as prisoners and pregnant women, and in individuals in special
settings such as nursing homes and long-term community centres.
Equally, these groups and environments have frequently been
overlooked regarding infections.69
The replication of studies in diverse populations and for a
variety of infections should be encouraged, as even if the
relationship between HL and clinical outcomes as well as
healthcare utilization has been reasonably well established,
research efforts focused on the impact of interventions and wider
socioeconomic and cultural determinants of HL may be pertinent.
Adapting and disseminating interventions that shape organizations or healthcare systems to be health literate remains an
underutilized approach.70 Many of the recommended actions for
organizations to embrace HL, such as the identification and
recognition of the impact of staff HL on the quality of patient–
provider interactions, rather than any underlying deficits of
patients, would overlap and act in synergy with optimal
management strategies for infectious diseases.
In conclusion, infectious diseases and antimicrobial resistance
constitute one of the most pressing challenges for healthcare
systems. Current responses to such challenges acknowledge the
vital role played by citizens and aim to benefit from increased
population self-efficacy. However, the influence of a crucial social
determinant such as HL on clinical and social outcomes related to
infectious diseases remains unsatisfactorily explored, with most
vulnerable groups likely to be affected by the dual burden of low
HL and a high prevalence of infections.
Acknowledgements
This research was funded by the National Institute for Health
Research Health Protection Research Unit (NIHR HPRU) in
Healthcare Associated Infection and Antimicrobial Resistance at
Imperial College London, in partnership with Public Health
England. The views expressed are those of the authors and not
necessarily those of the NHS, the NIHR, the Department of Health,
or Public Health England. ECS has received an Early Career
Research Fellowship from the Antimicrobial Research Collaborative at Imperial College London, and acknowledges the support of
the Florence Nightingale Foundation. Prof. Alison Holmes acknowledges the support of the Imperial College Healthcare Trust NIHR
Biomedical Research Centre (BRC).
Conflict of interest: The authors declare no conflict of interest.
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