ArticlePDF Available

Abstract and Figures

Infertility is a major public health issue and increasingly, the internet is used as a source of information and advice. The aim of this study is to understand the eHealth literacy of individuals and couples in relation to infertility. A non-probability sample of 27 participants was recruited from existing support groups, online advertising and snowballing representing the diverse population groups for whom involuntary childlessness is an issue. Information online was used both for decision making and developing interactive health literacy for health consultations. Participants may be both consumers and purveyors of information to others in distributed health literacy. Cognitive skills are required to appraise an inconsistent evidence base and potentially biased information from private providers of treatments. Accounts of geographical variations in treatment options, the cost of private treatment and for some, a sense that information and services were directed towards female and heterosexual couples, led some participants to political action online creating an important sense of empowerment. The study offers a new conceptual framework for eHealth literacy in the context of infertility, that combines use of the web and virtual communities in which functional, interactive, critical and distributed health literacy play a part in an online environment.
Content may be subject to copyright.
International Journal of
Environmental Research
and Public Health
Article
Multidimensional eHealth Literacy for Infertility
Susie Sykes 1,*, Jane Wills 1, Daniel Frings 2, Sarah Church 1and Kerry Wood 2
1
School of Health and Social Care, London South Bank University, 101 Borough Road, London SE1 0AA, UK;
willsj@lsbu.ac.uk (J.W.); churchs@lsbu.ac.uk (S.C.)
2School of Applied Science, London South Bank University, 101 Borough Road, London SE1 0AA, UK;
fringsd@lsbu.ac.uk (D.F.); woodk6@lsbu.ac.uk (K.W.)
*Correspondence: sykess@lsbu.ac.uk
Received: 3 December 2019; Accepted: 2 February 2020; Published: 4 February 2020
!"#!$%&'(!
!"#$%&'
Abstract:
Infertility is a major public health issue and increasingly, the internet is used as a source of
information and advice. The aim of this study is to understand the eHealth literacy of individuals
and couples in relation to infertility. A non-probability sample of 27 participants was recruited from
existing support groups, online advertising and snowballing representing the diverse population
groups for whom involuntary childlessness is an issue. Information online was used both for decision
making and developing interactive health literacy for health consultations. Participants may be both
consumers and purveyors of information to others in distributed health literacy. Cognitive skills are
required to appraise an inconsistent evidence base and potentially biased information from private
providers of treatments. Accounts of geographical variations in treatment options, the cost of private
treatment and for some, a sense that information and services were directed towards female and
heterosexual couples, led some participants to political action online creating an important sense of
empowerment. The study oers a new conceptual framework for eHealth literacy in the context of
infertility, that combines use of the web and virtual communities in which functional, interactive,
critical and distributed health literacy play a part in an online environment.
Keywords:
digital health literacy; eHealth literacy; distributed health literacy; fertility health literacy;
online fertility information
1. Introduction
Fertility is a key element of reproductive health, and infertility is recognized as a global public
health issue by the World Health Organization (WHO) [
1
]. Infertility is defined by WHO as the ‘failure
to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse’ [
2
] (p. 1522)
and is experienced by an estimated 48.5 million couples worldwide [
3
]. The Internet is a common
source of fertility-related information and over forty percent of women in the USA have reported using
the internet as a primary source of information for infertility and resources [
4
]. Slauson-Blevin’s [
5
]
analysis of 1352 women recruited from the US National Survey of Fertility Barriers (NSFB) was able
to investigate dierent preferences to help-seeking by infertile women, demonstrating that online
information was sought to complement rather than replace in-person information about infertility.
The reasons for seeking information online may be to find out about causes of infertility, alternative
treatments or ways to evaluate clinics [
6
,
7
]. Few studies have included other common help-seeking
demographics (i.e., those thinking about future fertility planning, same-sex couples, or those who have
had a live birth after a period of infertility). As many of these groups become more common with
greater fertility planning, these groups are included in this study.
Despite the recognized widespread use of the internet, relatively little is known about how
individuals and couples use health portals and web-based information for infertility. Digital or
Int. J. Environ. Res. Public Health 2020,17, 966; doi:10.3390/ijerph17030966 www.mdpi.com/journal/ijerph
Int. J. Environ. Res. Public Health 2020,17, 966 2 of 13
eHealth literacy is the ability to seek, find, understand and appraise health information from electronic
sources and apply the knowledge gained to addressing or solving a health problem [
8
]. Recent
conceptualizations of eHealth literacy have identified seven domains that can be investigated: (1) How
technology is used to process health information, (2) understanding of the health concepts and language
in the content, (3) the individual’s ability to actively engage with digital services, (4) the individual’s
feelings of being safe and in control when using online technology, (5) the individual’s motivation to
engage with digital services, (6) access to digital services that work and (7) digital services that suit
individual needs [
9
]. Making use of the internet demands both functional health literacy (the ability to
access and understand information) and communicative or interactive health literacy (the personal
skills needed to understand and act on information in a supportive environment). An early study [
10
]
found that internet help-seeking could lead some with involuntary childlessness to withdraw from
everyday interactions. In contrast, Hinton et al. [
11
] found that internet help-seeking reduced isolation,
oering normalization and reassurance and was a social process involving shared resources and support
which may be drawn from across a community as distributed health literacy [
12
,
13
]. Noorgard et al. [
9
]
acknowledge that their eHealth Literacy Framework (eHLF) model does not fully incorporate these
multi- dimensional characteristics of health literacy such as social support networks and engagement
with professionals.
This study provides an opportunity to develop eHealth literacy frameworks based on the empirical
findings that emerge from a study of online help-seeking in relation to the widely sought topic of
infertility. The aim of this empirical investigation was to investigate whether (i) individuals used
online information about fertility issues, (ii) how they engaged with it and (iii) whether it met their
information needs. It was conducted by a team of five researchers working with health technology
start-up companies using digital information.
2. Materials and Methods
The study was interested in the experiences and perceptions of individuals and the meanings they
attach to them. It therefore adopted an interpretive qualitative methodology allowing for the generation
of the rich data and insight required to understand complex phenomena. It is reported following the
consolidated criteria for reporting qualitative results (COREQ)guidelines [
14
]. Previous studies of
online help-seeking have sought only the views of those who identify as involuntarily childless, but this
study acknowledges that a much wider demographic group are interested in fertility information.
A sampling strategy was therefore required that includedindividuals possessing characteristics relevant
to meeting the research aim, rather than a random subgroup of the population. A non-probability
purposive approach to sampling was therefore used to recruit participants of child-bearing age from
five groups of interest: (1) people with infertility who have been trying to conceive for at least one year,
(2) people who had a live-birth after a history of infertility, (3) people in same-sex relationships who
are trying to conceive or want to explore their options for the future, (4) people who are not trying to
conceive but want to learn about fertility and prepare for the future and (5) people who are aged 40
years or over who are trying to conceive.
Participant selection took place through an invitation to participate which was posted through
online fertility networks and social media sites including Twitter, Instagram and Facebook. Snowballing
was employed as a secondary sampling strategy whereby referrals were taken from research participants
for additional potential participants. Thirty-nine individuals responded to initial recruitment, of whom
27 agreed to be interviewed. Those not going on to be interviewed cited issues such as infertility as a
stressful time, competing time pressures and work commitments. All participants were UK-based and
were self-defined as of child-bearing age (women) or equivalent (men). Semi-structured telephone
interviews were conducted with participants from each of the identified groups, as shown in Table 1.
Int. J. Environ. Res. Public Health 2020,17, 966 3 of 13
Table 1. Participants.
Sample Group Female Male Total
Individuals with infertility who have been trying to conceive for at least 1 year 14 0 14
Individuals who had a live-birth after a history of infertility 7 1 8
Individuals in same sex relationships who are trying to conceive or want to
explore their options for the future 213
Individuals who are not trying to conceive but want to learn about fertility and
prepare for the future 213
Individuals who are aged 40 or over who are trying to conceive 3 0 3
Total Sample 24 3 27
Note: Each participant may appear more than once if they identified with multiple groups.
An interview schedule was developed based on the framework for eHealth literacy described
by Norgaard et al. [
9
] to investigate for what purposes might the participant use the internet, how
they engaged with technology and digital information, whether digital services met individual needs,
their views about the trustworthiness and credibility of online information and services and how they
used the information they found. The schedule was piloted with the first participant, but only minor
amendments were made to the schedule as a result. Interviews lasted between 30 min and 1.5 h and
were audio recorded with permission. Interviews were carried out by all five members of the research
team. Checks were undertaken to ensure consistent use of the interview schedule through a team
discussion following initial interviews and by the principal investigator conducting checks on audio
recordings throughout the data collection period.
Data were analyzed by two researchers using an inductive thematic analysis following the six
steps laid out by Braun and Clarke [
15
]. NVivo (12) (QSR International, Melbourne, Australia) software
was used to manage the analysis process. All transcripts were read by the first author for familiarization
through the perspective of eHealth Literacy. The data were systematically coded followed by a process
of inductively analyzing codes and their relationships to each other in order to generate meaningful
subthemes and themes. Themes were mapped, reviewed and refined to ensure meaning and relevance.
The first author led the analysis process with the second author reviewing each stage of the analysis.
Both researchers were involved in the fifth stage of defining and naming the seven final themes.
Ethical approval was secured for the project from the LSBU Health and Social Care Ethics Committee
(ETH1819-0007).
3. Results
Seven overlapping themes were constructed from the data that represent the participants’
experience of accessing fertility-related information online: the nature of the issue, a diversity of
online users, motivations for accessing online information, accessing information, making sense of
information and applying information for decision making and action. Each theme incorporates the
diering facets from the data of the idea it represents and is made up of a number of related subthemes
(see Table 2) illustrating the complexity and depth of the semantic data.
Int. J. Environ. Res. Public Health 2020,17, 966 4 of 13
Table 2. Data themes and corresponding subthemes.
Theme Subtheme
1. Nature of the issue
Stigma
Inability to discuss
Impact on relationships
Emotional impact
Isolation
Gender dierences
2. Diversity and vulnerability
Relationship status
Sexuality
Gender
Fertility related issue
Economic circumstances
Financial vulnerability
Complexity of services
Private sector nature of services
3. Motivations for accessing eHealth information
Pursuit of information about fertility issues
Pursuit of information about services
Pursuit of information about personal stories
4. Accessing information online
First point of access
Accessing information-based websites
Accessing collaborative and social networking sites
Fertility topics searched
Emotional support and support networks
Information gaps
5. Navigating sites
Managing information
Style of information
Appropriate detail information
Aesthetic
Professionalism
Language
Optimism/realism
Inclusiveness
6. Making sense of information
Trustworthiness
Internal bias
Collective analysis and meaning making
7. Using information for decision making and action
Information for decision making
Information for preparation for consultations
Experts and purveyors of information
3.1. Nature of the Issue—Stigma
The issue of fertility was perceived as particularly complex and surrounded by stigma or what
some described as a ‘social taboo’, presenting challenges in discussing with friends and family or more
widely in society.
“It’s almost a stigmatized thing, so you sometimes find yourself at sea really.” (Participant 24)
For some, emotions of shame, denial and grief were expressed and experiences of isolation and an
impact on relationships were expressed, all of which aected participants’ ability to discuss their
situation openly:
“I didn’t really talk to anyone, because I didn’t want to worry my mum, I didn’t want my friends
to look badly of me. I felt really embarrassed and ashamed about being infertile-, talk to anyone.”
(Participant 18)
Int. J. Environ. Res. Public Health 2020,17, 966 5 of 13
These challenges were compounded by gender dierences in how the issue is experienced:
“I think my partner would struggle to understand exactly what I’ve been going through
...
. I can’t
necessarily rely on friends or family because they don’t understand or know how to deal with it, some
of them have, in fact, as soon as they’ve got pregnant stopped talking to me because I think they feel
uncomfortable.” (Participant 24)
3.2. Diversity and Vulnerability
Participants described a wide range of personal circumstances, both of themselves and of those
they met in online fertility forums, based on relationship status, gender, age, ethnicity, sexuality,
socio-economic status and type of infertility being experienced. This diversity led to a wide range of
need and experiences online, but some platforms were seen to assume a more homogenous audience.
For some, vulnerabilities were identified and a potential for exploitation was felt particularly by those
in same-sex relationships, some of whom felt removed and isolated from health services and any
security they might oer:
“Because you basically get straight men on there [sperm donor websites] that say, natural
insemination only, which means having sex, and they basically think that lesbians are just going to
have sex with them, like it’s really, like, predatory, you know, there’s a lot of like, just predatory men
on there and so we, and again you have to pay the membership and stu. Which I guess part of that is
just so to like just filter out people misusing it, but it still happens.” (Participant 38)
Feelings of vulnerability and fear of financial exploitation were felt across the sample groups and were
often linked to the complex nature of the fertility services and treatment, requiring navigation of a
complicated private sector of competing services.
“The industry isn’t very joined up. I went to the fertility show this year and I found that the medical
professionals were very unprofessional
...
. They were almost bad mouthing each other and being
quite competitive about things. It made me feel very uncomfortable.” (Participant 10)
3.3. Motivations for Accessing eHealth Information
Participants were motivated by two key factors when seeking information online: a pursuit of
information about fertility and the services available to them and secondly, stories about personal
experiences. While a minority did not want to engage with people’s personal experiences, the majority
did. For the latter, personal stories were seen as an important source of information, providing a
more holistic and human angle and enabled participants to find somebody whose situation reflected
their own:
“I think to me personally, it was good to see personal stories on those websites, and particularly about
miscarriages. There were a lot of personal stories and how people cope with this and what they do
next. So, that was definitely helpful to me and I could see that natural human beings interact with
this website, with this group. To me, that was helpful.” (Participant 16)
3.4. Accessing Information Online: Where to Go and What to Look For
Accessing online information was described as a complex process and issues identified included:
first point of access online, types of platforms accessed, topics searched and gaps in information.
All participants said that they accessed the internet as one of their first sources of information.
Frustrations were expressed at the limited information provided by health professionals, especially
when first contacting them about fertility issues:
“Just to share my example of reaching out to doctors in the NHS, they were completely uninterested
and didn’t really want to have the conversation, didn’t want to give me the blood test, didn’t oer me
Int. J. Environ. Res. Public Health 2020,17, 966 6 of 13
any support or advice.
...
They didn’t oer me any further reading or research, or anything like that.”
(Participant 11)
The two motivating factors identified above result in individuals accessing both Web 1.0 platforms
(traditional, information-based websites, where users view content in a passive manner) and Web 2.0
platforms (websites that allow user collaboration and includes social networking sites, social media
sites, blogs, wikis and video sharing sites). Those searching for the former inevitably began their search
in a web browser, typically Google, and searching was generally described as unstructured and relied
on some luck to find useful sites:
“Really, I suppose it is a bit of a scattergun approach. It’s seeing what comes up on Google.”
(Participant 17)
Web 2.0 platforms included message and discussion boards but these were often seen as out of date
and containing historic content that was frustrating to search. Social media sites were more frequently
mentioned including Facebook, Twitter and Instagram. Instagram was by far the most popular social
media platform with participants suggesting they attracted dierent audiences and reporting a more
informed conversation on Instagram than on Facebook:
“I think the people who like Instagram and use Instagram are very dierent from the people that
would use a forum or would use Facebook. I know pretty much, I would say, 90% of the women that
I network with online, they absolutely hate Facebook and they wouldn’t use it on a personal level,
or even a professional level. They don’t like it. I think it’s probably to do with our generation, it’s
probably to do with the way that people overshare information.” (Participant 10)
Information sought varied as participants progressed through their journey to infertility treatment or
not. Typically, very general searches were undertaken initially, often related to causes of infertility,
and most felt this level of information was generally well provided:
“Initially it was just general information, like ’we can’t conceive, what do we do now?’ or ’how soon
do we go to the doctor?’ ’what percentage of couples conceive before their treatment starts, so before
the year’s up or the two year’s up.” (Participant 20)
As individuals became more informed and engaged with services and treatment more fully, the topics
they looked for became more bespoke and more challenging to find.
“I think there’s a lot to get people started. I think there’s a lot. I think it’s probably when you get
to a certain stage and it could be a very, very specific medical, genetic reason why, say, your cycles
keep failing or you keep miscarrying. That’s probably where it gets tricky and you might not find
information online.” (Participant 9)
Many were also looking for emotional support and a sense of community. Those using the social media
platforms did use them for information but many also used them to find people in similar situations
and form support networks which, for some, became very close and evolved into oine friendships.
Support online rather than from real world friends and family was preferred by some because of the
shared experience and ability to discuss openly and anonymously:
“In my situation, I became part of a group on Facebook that is for women that are trying to have a
baby alone.
...
There’s nearly 500 of us on there. That has been a huge source of information to me,
huge, because obviously all these women are in the same situation
...
I’ve become very, very good
friends with probably about six women there that have had children now, who have got very small
babies, and I go and help them all the time.” (Participant 3)
Int. J. Environ. Res. Public Health 2020,17, 966 7 of 13
The most frequently cited information gap was male factor infertility. It was also felt that content
online did not suciently reflect the diversity of people that might be seeking information on fertility,
particularly those not in relationships or in same-sex relationships. These latter participants felt that
information on topics they might be most interested in was harder to find and at times, appeared
less legitimate:
“When you’re looking at home insemination I think sometimes it felt a bit like more taboo, like, it’s
more o-the-book if that makes sense. Like, you’re not really supposed to be doing this, but actually
when you get the legal information it’s like all of this is legal, it is okay, we’re not doing anything, like,
suspicious we’re not like, paying for a baby and stulike that.” (Participant 38)
3.5. Navigating Sites—How to Manage It
Once participants engaged with a site, they faced challenges including managing the information
and the style in which information was presented. Many participants felt overwhelmed by the
information available and there was also a sense that the basic and general information that might be
useful is available on many sites but that quickly becomes redundant as more specific and specialized
information is required.
The aesthetic of a site was seen as very important with a preference expressed for simple, clean,
uncluttered and professional sites. Adverts were seen very negatively as were sites that were too
impersonal and made use of chat-bots:
“The little chat-bot, the AI thing pops up and wants to chat, kind of, like, well, this isn’t something
that you want to chat to a computer about.” (Participant 11)
While professionalism was important, so too was a personal element and a sense of who is behind the
website and their motivation. A challenging balance of non-medicalized language that was not over
simplified or patronizing was desired:
“I don’t know if other people feel the same as me but I sometimes find websites patronizing as they go
on too much about how you should try and be healthy, so, I would be a bit, kind of, careful you know,
assuming that people who have tried for years, they probably know they should eat their vegetables.”
(Participant 2)
For some, optimism was appreciated, but for most, a realistic tone was more important. Participants
wanted infertility to be presented in a way that normalized it and helped remove the perceived taboo.
There was also a desire for information to be presented in a more inclusive way as there was a feeling
that most sites targeted white, heterosexual females in relationships and that this did not reflect reality.
This was seen to be apparent in images, language and content:
“It would be nice if they consider, like, to try and appeal to men and women because I know for my
husband, there’s a lot less out there and also for dierent problems because a lot of websites are about
female infertility issues and a lot of the support online is for those.” (Participant 2)
3.6. Making Sense of Information
In discussing how information was appraised and processed, two themes emerged: the issue of
trustworthiness and a process of collective analysis and meaning making of information described in
this section as distributed health literacy.
The trustworthiness of information was an important issue for participants. Individuals felt
that infertility is a rapidly changing field and there is an inconsistent evidence base. Infertility
treatment is often sought from private providers and so information online can be biased and was
often contradictory:
Int. J. Environ. Res. Public Health 2020,17, 966 8 of 13
“Some people will say, actually, Tupperware is the devil and you should not have any BPA, but
actually, other people say you can’t really avoid it, and it’s about minimizing it as much as you can.
It’s not really clear, actually, what does the evidence say?” (Participant 17)
Some participants were also aware of their own bias and that their desperation to find certain answers
might lead them to keep searching until they found them, making them vulnerable to misinformation:
“It’s more me wanting to find something rather than just me dismissing something because it seems
like hearsay or gossip. I’m not able to withdraw at that stage.” (Participant 24)
In judging trustworthiness, a credible source was very important. Participants were keen to see a site
where a trusted organization sifted through and appraised evidence for them and translated it into
plain English:
“That’s why if I find a site that, sort of, collects all this data for me, in a way, and, sort of, screens them
for me, that would make it helpful. That would make the work a bit easier and present the information
a bit more systematically”. (Participant 29)
There were conflicting opinions over whether information based on personal information was more or
less trustworthy. For some, personal opinion was to be avoided because it was not fact-based:
“Just because it’s not based on facts. It’s people-, experiences and not necessarily backed up information
that they’re sharing.” (Participant 12)
While for others, the opposite was true and the personal nature of it made it more reliable:
“You know, because some people share their personal experiences of it. For me, it’s hard, just to doubt
that.” (Participant 29)
Others recognized this conflict in themselves:
“So, I guess the trust element as well. I would trust a scientific journal article over, maybe, a blog that
someone’s written, but then a blog is also personal experience, so actually, that statement might not be
true. It’s more real then, isn’t it? It’s more tried and tested.” (Participant 9)
As part of the process of finding, appraising and processing information, participants moved backwards
and forwards continuously between the Web 1.0 and Web 2.0 platforms. Online communities were
proactively used to identify sources of information and then to discuss, process and understand
information. Through this, an important collective understanding was generated. People engaged
in this process dierently with some passively observing conversations while others engaged in
conversations or led them:
“I think I feel it’s a very safe place for information, and I wouldn’t have known about DNA
fragmentation unless I had joined this community, because there were other women who were desperate
to get help and found out more about why their IVF was failing, and to see specialists because their
husbands hadn’t been given the time of day. Then they share who they’d seen, what investigations
they’ve had done, and then you’ve got that in your mind and you think, ’Do you know what? I’m
going to ask about this, and I’m going to look it up and I’m going to find out more information.”
(Participant 10)
3.7. Using Information for Decision Making and Action
In using the information gathered online, a number of themes emerged. Information was used for
decision making as well as for preparing for, and managing, consultations, described here as interactive
health literacy. A movement was also described from participants as consumers of information to
purveyors of information and ultimately, for some, demonstrating levels of critical health literacy skills.
Information gathered from the internet and discussed online was consistently used as the basis
for action. Information gained informed decision making and underpinned changes in behavior:
Int. J. Environ. Res. Public Health 2020,17, 966 9 of 13
“So, that made me more aware of what I was eating, what I was drinking, what tablets I was taking,
nutrition, all of that kind of stu, so I googled probably a lot about that as well then, and acupuncture.
You know, like, if I eat pineapple, will that help? That kind of stu, Brazilian nuts, and you know,
the fertility diet type of thing.”
For most participants, information was used to inform decision making about treatment options:
“I looked at the NICE guidelines, which says that at the moment there is no evidence to suggest that
that would improve rates, that particular surgery, so that is not advised. So, that’s why I talked about
it with my husband. I would go there’s the evidence and say if there’s no evidence you shouldn’t do it,
it’s still surgery, there’s still risks attached to it.” (Participant 2)
Participants frequently cited examples of using information from websites and online conversations to
prepare for, and to understand, interactions with health professionals. Participants used information
and other people’s experiences to prepare questions for health professionals and to ask about treatment
options, ensuring a more informed conversation. They then took information from their consultation
back to the online communities in order to assess options and develop their understanding. This iterative
process was highly valued:
“I just wanted to know what to expect, rather than just walking into the surgery or walking into hospital
not really knowing. Even just little things, like, I didn’t know what to wear, and you know, whether I
needed to-, just being prepared to have to take my clothes o, or to have an examination or something
like that. Just so I felt a bit more prepared before going to the doctors, really.” (Participant 12)
Many talked about how quickly their knowledge had grown and how they had become ‘experts’ in
the subject describing a transition from being consumers of knowledge to becoming purveyors of
knowledge, initially to their partner or family, but for some, this progressed to other users in the
online community. For some it went further and they set up their own sites, wrote their own blogs or
contributed articles to existing sites providing an important sense of purpose.
“Now, I’ve written a couple of articles and stulike that have been published, not for payment, just on
some of those websites.” (Participant 23)
4. Discussion
The example of infertility illustrates the important function the internet plays as a source of both
information and support. The taboo identified in owning and discussing infertility in public spheres,
has been evidenced elsewhere [
16
,
17
] and this places a premium on digital platforms for information.
The gendered pursuit and provision of fertility information [
7
,
17
] and the concerns that online fertility
platforms do not recognize the diversity of personal circumstances leads to a danger that this important
resource is not equally accessible to all. This is compounded by the complex eHealth literacy skills
required to navigate this information. Those with higher levels of eHealth literacy have been shown
to gain more positive outcomes from internet use in terms of knowledge, behavior and interactions
with health professionals [
18
,
19
], and this leads to concerns that inequalities already experienced with
regard to infertility may become compounded.
Individuals are motivated to access the resources held online for a number of purposes: health
information, service information, the appraisal of information against knowledge and experience,
preparing for and understanding consultations, help in decision making and emotional support. How
people engage with information and behave within online communities varies, with some taking
a passive role as observers and consumers of information, others actively engaging in discussion
and support and some taking a facilitating or leadership role. The accessing of online resources has
the potential to lead to a more informed and supported individual who can become a purveyor of
information and engage in informed decision making and action.
Int. J. Environ. Res. Public Health 2020,17, 966 10 of 13
eHealth literacy models have been helpful in understanding how people interact with digital
platforms and the skills they need to access, understand, appraise and apply health information.
The original model of eHealth Literacy oered by Norman and Skinner [
8
] has been used as the
conceptual foundation for work in this area. Norman himself identified the need for his Lily model
of eHealth literacy to be further developed in light of digital developments, in particular the context
of Web 2.0 opportunities. However, subsequent conceptual developments, for example in work by
Chan and Kauman [
20
], Gilsted [
21
] and more recently by Noorgarrd et al. [
9
], still focus on the
interaction of users with technology and digital services rather than the two-way dialogical nature of
online opportunities oered through social media platforms. Work by Chen and Lee [
22
] demonstrated
the importance of participatory eHealth behaviors alongside the traditional focus on informational
eHealth behaviors. What the current study adds to this discussion is a demonstration of the complex
interaction and movement by participants between: information-based platforms, conversational
platforms and information provided by health professionals with online communities playing a central
part in this relationship. The findings demonstrate that this movement contributes to all stages of
accessing, understanding, appraising and applying information. Importantly, this suggests that the
gap in conceptualizations of eHealth Literacy identified by Norman [
8
] has not yet been addressed.
Reflecting this and our findings, Figure 1is a new conceptual model of eHealth literacy that shows
these complex and diverse ways in which people use the internet as a resource for health literacy in the
context of fertility.
Int. J. Environ. Res. Public Health 2020, 17, x 10 of 14
interactions with health professionals [18,19], and this leads to concerns that inequalities already
experienced with regard to infertility may become compounded.
Individuals are motivated to access the resources held online for a number of purposes: health
information, service information, the appraisal of information against knowledge and experience,
preparing for and understanding consultations, help in decision making and emotional support.
How people engage with information and behave within online communities varies, with some
taking a passive role as observers and consumers of information, others actively engaging in
discussion and support and some taking a facilitating or leadership role. The accessing of online
resources has the potential to lead to a more informed and supported individual who can become a
purveyor of information and engage in informed decision making and action.
eHealth literacy models have been helpful in understanding how people interact with digital
platforms and the skills they need to access, understand, appraise and apply health information. The
original model of eHealth Literacy offered by Norman and Skinner [8] has been used as the
conceptual foundation for work in this area. Norman himself identified the need for his Lily model
of eHealth literacy to be further developed in light of digital developments, in particular the context
of Web 2.0 opportunities. However, subsequent conceptual developments, for example in work by
Chan and Kauffman [20], Gilsted [21] and more recently by Noorgarrd et al. [9], still focus on the
interaction of users with technology and digital services rather than the two-way dialogical nature of
online opportunities offered through social media platforms. Work by Chen and Lee [22]
demonstrated the importance of participatory eHealth behaviors alongside the traditional focus on
informational eHealth behaviors. What the current study adds to this discussion is a demonstration
of the complex interaction and movement by participants between: information-based platforms,
conversational platforms and information provided by health professionals with online communities
playing a central part in this relationship. The findings demonstrate that this movement contributes
to all stages of accessing, understanding, appraising and applying information. Importantly, this
suggests that the gap in conceptualizations of eHealth Literacy identified by Norman [8] has not yet
been addressed. Reflecting this and our findings, Figure 1 is a new conceptual model of eHealth
literacy that shows these complex and diverse ways in which people use the internet as a resource
for health literacy in the context of fertility.
Figure 1. New conceptualization of eHealth Literacy in context of infertility.
Existing work in this area has shown the importance of established networks to access
information and support decision making [23,24] and this study demonstrates the value that people
Figure 1. New conceptualization of eHealth Literacy in context of infertility.
Existing work in this area has shown the importance of established networks to access information
and support decision making [
23
,
24
] and this study demonstrates the value that people seeking
infertility information place on such networks. Where physical networks are absent, these findings
show an active pursuit to join them or create them in an online environment and may be understood
as an example of distributed health literacy. This concept suggests that the knowledge and skills
required to be health-literate are not just held by an individual but are an available resource distributed
across a whole community [
25
]. This shared resource can act as a buer for people with low levels
of health literacy [
25
,
26
], with one study showing that each percentage increase of average health
literacy within a community is associated with a two percent increase in self-reported health for
individuals in that community, concluding that both individual- and community-level health literacy
Int. J. Environ. Res. Public Health 2020,17, 966 11 of 13
are significant, distinct correlates of individual health status [
13
]. McElhinney’s work [
27
] on Virtual
World communities, while focusing on avatar-based immersive environments, has shown how the
collective knowledge and skills of communities in Virtual Worlds can influence and improve individual
health literacy in the physical world. The use of the online environment as a safe space to prepare for
consultations with professionals and therefore build interactive health literacy, may oer important
potential, with McElhinney’s work [
28
] illustrating how the rehearsing of learning in a virtual world
can act as a pre-curser to the practicing of it in the physical world. However, how distributed health
literacy is operationalized in an online environment and its impact on individual decision making and
action is still poorly understood.
While this example of distributed health literacy oers the sharing of knowledge and skills across
a network, it also oers the potential for the spread of misinformation [
29
] and the supporting of
negative decision making, as demonstrated by McKinn et al. [
26
]. The trustworthiness of information
about fertility was important to the participants but there were considerable challenges associated
with judging credibility, the availability of conflicting information and their own emotional drivers
that led some participants to actively seek a particular conclusion. These challenges exist not only in
distributed health literacy in online communities but also for those relying on web-based information
where discrepancies between internet and academic literature exist [
30
,
31
]. Calls for the participatory
development of digitally based health information [
32
] may go some way to mitigate against the
latter, but this is harder to address within a social media context. The Online Health Community
model presented by Zhou and Fan [
33
] of health communities managed by healthcare providers or
expert patients may oer some potential, and these are increasingly seen to be forming a component
part of targeted health apps. The HealthUnlocked app oered by the NHS in the UK oers 700
online communities moderated by patient organizations. However, their acceptability and use as an
alternative to naturally formed virtual communities is not well explored, particularly within the field
of fertility.
A limitation of this study is its geographical focus. All participants were from the UK and
focused on the use of English language internet sites. The cultural and contextual issues raised and
those relating to the nature of service provision may therefore vary in other geographical settings.
The sampling strategy also utilized infertility networks as a key forum for recruitment. This may
have meant that those very early on in their pursuit of infertility information may have been less
likely to have been included in the sample. Finally, sampling purposively focused on people with
specific experiences (e.g., a diagnosis of infertility, having had a live-birth after a history of infertility)
rather than age, ethnicity or socio-economic factors. This was to ensure a recruitment priority was
placed on the identified groups experiencing infertility. Variations may exist in the experiences across
child-bearing age, ethnicity and socio-economic status that are not captured by this study. While these
data may not be generalizable to the whole population experiencing infertility, the recurrent appearance
of themes and absence of new codes being generated towards the end of the analysis process, as well
as the similar sample size to other studies in this area [
11
,
34
], means that data adequacy can be seen to
have been achieved.
5. Conclusions
A new conceptualization of eHealth literacy was developed from this study that more fully
acknowledges the importance of online communities and the role that distributed health literacy may
play in an online environment. The continual movement between the digital spaces of web-based
information and virtual communities, and the physical world interactions with health professionals
is an important finding for eHealth literacy models. It has important implications for information
providers in showing how online information has the potential to contribute to functional, interactive
and critical health literacy.
The use of digital platforms is aected by the nature and topic of the health information sought.
Whilst studies of online help-seeking use a range of theoretical explanatory models [
35
], predominantly
Int. J. Environ. Res. Public Health 2020,17, 966 12 of 13
informed by psychological expectancy about what needs information will serve, individual motivations
in relation to infertility are varied and complex, as shown in Figure 1. As a sensitive health issue
surrounded by stigma and where there is a varied demographic and a diversity of circumstances
and needs, online help-seeking for infertility illuminates the importance of communities and the
transactional nature of the relationship that the individual user has with the digital information.
Author Contributions:
Conceptualization, J.W. and S.S.; methodology, S.S. and J.W.; investigation, S.S., J.W., D.F.,
S.C., K.W.; data curation, S.S.; formal analysis, S.S. and J.W.; writing—original draft preparation, S.S. and J.W.;
writing—review and editing, D.F. All authors have read and agreed to the published version of the manuscript.
Funding:
This research was co-funded by London South Bank University and the European Regional Development
Fund, grant number 23R15S00024. Funding is under Priority Axis 1, Investment Priority 1b: Promoting investment
in research and innovation.
Acknowledgments:
We would like to acknowledge the support provided by Rachel Bui in the administration
and organization of interviews during this research.
Conflicts of Interest: The authors declare no conflict of interest.
References
1.
WHO. Reproductive Health Indicators: Guidelines for Their Generation, Interpretation and Analysis for Global
Monitoring; WHO: Geneva, Switzerland, 2006.
2.
Zegers-Hochschild, F.; Adamson, G.D.; de Mouzon, J.; Ishihara, O.; Mansour, R.; Nygren, K.; Sullivan, E.;
Vanderpoel, S. International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the
World Health Organization (WHO) revised glossary of ART terminology. Fertil. Steril.
2009
,92, 1520–1524.
[CrossRef][PubMed]
3.
Mascerenhas, M.; Flaxman, S.; Boerma, T.; Vanderpoel, S.; Stevens, G. National, Regional, and Global Trends
in Infertility Prevalence Since 1990: A Systematic Analysis of 277 Health Surveys. PLoS Med.
2012
,9,
e1001356. [CrossRef]
4.
Lundsberg, L.S.; Pal, L.; Gariepy, A.M.; Xu, X.; Chu, M.C.; Illuzzi, J.L. Knowledge, attitudes, and practices
regarding conception and fertility: A population-based survey among reproductive-age United States
women. Fertil. Steril. 2014,101, 767–774. [CrossRef][PubMed]
5.
Slauson-Blevins, K.S. Infertility Help Seeking and Social Support: Do Conventional Theories Explain Internet
Behaviors and Outcomes. Ph.D. Thesis, University of Nebraska-Lincoln, Lincoln, NE, USA, 2011.
6.
Kahlor, L.; Mackert, M. Perceptions of infertility information and support sources among female patients
who access the internet. Fertil. Steril. 2009,91, 83–90. [CrossRef][PubMed]
7.
Zelkowitz, P.; Robins, S.; Grunberg, P. Searching for Infertility Information Online: Dierences Between Men
and Women. IPROC 2016,2, e37. [CrossRef]
8. Norman, C.; Skinner, H. eHEALS: The e health literacy scale. J. Med. Int. Res. 2006,8, e27. [CrossRef]
9.
Norgaard, O.; Furstrand, D.; Klokker, L.; Karnoe, A.; Batterham, R.; Kayser, L.; Osborne, R. The e-health
literacy framework: A conceptual framework for characterizing e-health users and their interaction with
e-health systems. Knowl. Manag. E-Learn. 2015,7, 522–540.
10.
Epstein, Y.; Rosenberg, H.; Hemenway, N.; Grant, T. When the internet is your only outlet for talking about
infertility. Fertil. Steril. 2001,76, s26–s27. [CrossRef]
11.
Hinton, L.; Kurinczuk, J.; Ziebland, S. Infertility; isolation and the Internet: A qualitative interview study.
Patient Educ. Couns. 2010,81, 436–441. [CrossRef]
12.
Papen, U. Literacy, learning and health—A social practices view of health literacy. Lit. Numeracy Stud.
2009
,
16, 19–34. [CrossRef]
13.
Sentell, T.; Zhang, W.; Davis, J.; Kromer-Baker, K.; Braun, K. The Influence of Community and Individual
Health Literacy on Self-Reported Health Status. J. Gen. Intern. Med.
2014
,29, 298–304. [CrossRef][PubMed]
14.
Tong, A.; Sainsbury, P.; Craig, J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item
checklist for interviews and focus groups. Int. J. Qual. Health Care 2007,19, 349–357. [CrossRef][PubMed]
15. Braun, V.; Clarke, V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006,3, 77–101. [CrossRef]
16.
Palmer-Wackerly, A.; Krieger, J. Dancing Around Infertility: The Use of Metaphors in a Complex Medical
Situation. Health Commun. 2015,30, 612–623. [CrossRef][PubMed]
Int. J. Environ. Res. Public Health 2020,17, 966 13 of 13
17.
Robins, S.; Barr, H.; Idelson, R.; Lambert, S.; Zelkowitz, P. Online Health Information Regarding Male
Infertility: An Evaluation of Readability, Suitability, and Quality. Interact. J. Med. Res.
2016
,5, e25. [CrossRef]
[PubMed]
18.
Baum, F.; Newman, L.; Biedrzycki, K. Vicious cycles: Digital technologies and determinants of health in
Australia. Health Prom. Intl. 2012,29, 349–360. [CrossRef][PubMed]
19.
Neter, E.; Brainin, E. eHealth Literacy: Extending the Digital Divide to the Realm of Health Information.
J. Med. Int. Res. 2012,14, e19. [CrossRef]
20.
Chan, C.V.; Kaufman, D.R. A framework for characterizing eHealth literacy demands and barriers. J. Med.
Int. Res. 2011,13, e94. [CrossRef]
21.
Gilstad, H. Toward A Comprehensive Model of eHealth Literacy. In Proceedings of the 2nd European
Workshop on Practical Aspects of Health Informatics, Trondheim, Norway, 19–20 May 2014.
22.
Chen, W.; Lee, K. More than search? Informational and participatory eHealth behaviors. Comput. Human
Behav. 2014,30, 103–109. [CrossRef]
23.
Opel, D.; Marcuse, E. Window or mirror: Social networks’ role in immunization decisions. Pediatrics
2013
,
131, e1619–e1620. [CrossRef]
24.
Edwards, M.; Wood, F.; Davies, M.; Edwards, A. ‘Distributed health literacy’: Longitudinal qualitative
analysis of the roles of health literacy mediators and social networks of people living with a long-term health
condition. Health Expect. 2013,18, 1180–1193. [CrossRef]
25.
Ishikawa, H.; Kiuchi, T. Association of health literacy levels between family members. Front Public Health
2019,7.[CrossRef][PubMed]
26.
Mckinn, S.; Duong, T.; Foster, K.; McCaery, K. Distributed Health Literacy in the Maternal Health Context
in Vietnam. HLRP 2019,3, e31–e42. [CrossRef]
27.
McElhinney, E.; Kidd, L.; Cheater, F.M. Health literacy practices in social virtual worlds and the influence on
health behaviour. Global Health Prom. 2018,25, 34–47. [CrossRef]
28.
McElhinney, E. Health literacy practices of adults in an avatar-based immersive social virtual world:
A sociocultural perspective of new media health literacies. In International Handbook of Health Literacy:
Research, Practice and Policy across the Lifespan; Okan, O., Bauer, U., Levin-Zamir, D., Pinheiro, P., Sørensen, K.,
Eds.; The Policy Press: Bristol, UK, 2019.
29.
Pershad, Y.; Hangge, P.; Albadawi, H.; Oklu, R. Social Medicine: Twitter in Healthcare. J. Clin. Med.
2018
,7,
121. [CrossRef]
30.
Chesser, A.; Burke, A.; Reyes, J.; Rohrberg, T. Navigating the digital divide: A systematic review of eHealth
literacy in underserved populations in the United States. Inform. Health Soc. Care
2016
,41, 1–19. [CrossRef]
31.
Samplaski, M.; Clemesha, C. Discrepancies between the internet and academic literature regarding vitamin
use for male infertility. Transl. Androl. Urol. 2018,7, S193–S197. [CrossRef]
32.
Ferrer, L. Engaging Patients, Carers and Communities for the Provision of Co-ordinated/Integrated Health Services:
Strategies and Tools; WHO: Geneva, Switzerland, 2015.
33.
Zhou, J.; Fan, T. Understanding the Factors Influencing Patient E-Health Literacy in Online Health
Communities (OHCs): A Social Cognitive Theory Perspective. Int. J. Eenviron. Res. Public Health
2019,16, 2455. [CrossRef]
34.
Vasileiou, K.; Barnett, J.; Thorpe, S.; Young, T. Characterising and justifying sample size suciency in
interview-based studies: Systematic analysis of qualitative health research over a 15-year period. BMC Med.
Res. Methodol. 2018,148.[CrossRef]
35.
Marton, C.; Choo, C. A review of theoretical models of health information seeking on the web. J. Doc.
2014
,
68, 330–352. [CrossRef]
©
2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access
article distributed under the terms and conditions of the Creative Commons Attribution
(CC BY) license (http://creativecommons.org/licenses/by/4.0/).
... COVID-19 poses new challenges for understanding eHL needs in relation to public information, the movement of citizens between information environments and patterns of knowledge sharing in an era of 'false narratives'. Contemporary conceptualizations of eHL (Griebel et al., 2018;Sykes et al., 2020) have highlighted the importance of distributed HL, pointing to the two-way dialogical opportunities offered by social media platforms. These allow for misinformation and myths to spread but also for individuals or infection control teams to act as amplifiers of scientific advice and preventative actions, as during the Ebola outbreak in 2015/16 (Marais et al., 2016). ...
... These allow for misinformation and myths to spread but also for individuals or infection control teams to act as amplifiers of scientific advice and preventative actions, as during the Ebola outbreak in 2015/16 (Marais et al., 2016). Sykes et al. (Sykes et al., 2020) describe how citizens may be not only consumers of information online, seeking information to find out about services, symptoms, help with decision making and emotional support but may also converse about, support and facilitate their own or others' behavioural actions. This distributed HL (Edwards et al., 2015) can be found online or in other contexts such as families or social networks and can act as a buffer for low levels of functional HL but it can also offer the potential for the spread of misinformation (Ishikawa and Kiuchi, 2010). ...
... A semi-structured interview schedule was created using the key dimensions of the eHL model developed in Sykes et al. (Sykes et al., 2020). Interviews were scheduled at a time convenient to the participant and were conducted remotely via telephone or a messaging service. ...
Article
The containment of infectious diseases is most successful when at-risk populations have a high level of relevant health literacy (HL). To achieve this both literacy needs and patterns of knowledge sharing must be understood within the context of the disease being studied. It is also important to understand these processes from both offline (HL) and online (eHL) perspectives and amongst demographics with access to different types of information and social capital, and who have different levels of vulnerability. This paper discusses the insights gained over a series of 30 interviews with the UK residents aged either 19 − 30 years of age or older than 70 years—focussing on how they seek, understand, evaluate and convey information about COVID-19 during the current pandemic. Using thematic analysis, we identified themes around motivations to seek information, the information journey, digital choice and engagement, dilemmas and challenges of managing and appraising information, and sharing information. There was little difference in the eHL between the two age groups who both had high levels of education and were sophisticated digital citizens. The COVID-19 pandemic highlights three dominant processes in managing complex and uncertain information: some individuals may suffer from information fatigue but there was no evidence of any impact on their behaviours; others seek and share information across many networks; and there were strikingly high levels of distrust leading to complex processes of meaning-making demanding critical health literacy skills.
... Service exchanges are hosted in digital environments, which activate a friendly environment where health-care professionals, patients and informal caregivers may interact in order to achieve a continuum of care which is consistent with the specific needs and expectations of the cared for (Furstrand et al., 2021). Digital health settings pave the way for the creation of personal learning networks, which are crucial to nurture the patients and informal caregivers' relational digital skills (Konstantinidis et al., 2017) and to ensure the access to timely and relevant information about issues related to health promotion and risk prevention (Sykes et al., 2020). ...
Article
Purpose: Promoting health literacy, i.e. the ability to access, collect, understand, and use health-related information, is high on the health policy agenda across the World. The digitization of healthcare calls for a reframing of health literacy in the cyber-physical environment. The article systematizes current scientific knowledge about digital health literacy and investigates the role of healthcare organizations in delivering health literate healthcare services in a digital environment. Methodology: A literature review was accomplished. A targeted query to collect relevant scientific contributions was run on PubMed, Scopus, and Web of Science. A narrative approach was undertaken to summarize the study findings and to envision avenues for further development in the field of digital health literacy. Findings: Digital health literacy has distinguishing attributes as compared with health literacy. Patients may suffer from a lack of human touch when they access digital health services. This may impair their ability to collect health information and to use it appropriately to co-create value and to co-produce health promotion and risk prevention services. Healthcare organizations should strive for increasing the patients’ ability to navigate the digital healthcare environment, boosting the latter’s value co-creation capability. Practical implications. Tailored solutions should be designed to promote digital health literacy at the individual and organizational levels. On the one hand, attention should be paid to the patients’ special digital health information needs, avoiding flaws in their ability to contribute to health services’ co-production. On the other hand, healthcare providers should be involved in the design of user-friendly e-health solutions, which are directed to engage people in value co-creation. Originality/value. This article attempts to systematize extant scientific knowledge in the field of digital health literacy with a specific focus on the strategies and initiatives that healthcare organizations may take to cope with the pandemic of limited digital health literacy.
... High-quality, equitable (69), and widely available health education is necessary for making informed choices. Interventions aimed at increasing health literacy and tailored to patients' needs have been found to be effective or at least promising tools for changing health knowledge and behaviours (70)(71)(72). That is why it is imperative to further explore the gaps in RH education in Poland in order to make it more operational and practical, more interesting, and relevant to young people's everyday experience, and more comprehensive in terms of balancing the present focus on family values and pregnancy prevention with the content aimed at improving their FA and teaching them to look after their reproductive potential. ...
Article
Full-text available
The falling fertility indicators and high prevalence of infertility in Poland make it important for people of reproductive age to have good knowledge of their own fertility in order to be able to take care of their reproductive health. This paper examines reproductive health literacy and fertility awareness among Polish female students. It can help identify gaps in reproductive health education in Poland. The study group included 456 women aged 18-29, who were students of 6 public universities located in Poznan, Poland. The method used was a survey using a self-developed questionnaire assessing the students' knowledge of female and male fertility-related physiology and fertility patterns. The respondents' knowledge was assessed on the basis of the percentage of correct answers. Regression analysis and univariate analysis of variance were used to explore relationships between the students' knowledge and their age, year of study, university and source(s) of information. The average score of correct answers was 55.8%. Older students and medical university students were the most knowledgeable. 93.4% of the respondents correctly identified the optimum age for a woman to have the first child from the point of view of achieving pregnancy fast. Over 90% of the respondents knew such fertility-compromising risks as smoking, diseases and psychological distress. There was much poorer awareness of the adverse effect of unbalanced diet, irregular sleep, and long-lasting physical effort. 47.1% of the students reported gaining information from a number of sources, but as many as 28.3% said their only source was primary or middle school classes. Reproductive health knowledge among the young female students is incomplete, especially as regards lifestyle-related risks. They should be encouraged to supplement it by consulting reliable sources such as health professionals. It is advisable to ensure that the curricula of medical university students provide thorough knowledge in this area, and to arrange suitable electives for students from other universities. As primary and secondary school classes remain an important source of information, quality teaching at these levels should be offered with a focus on making the knowledge as practical and operational as possible. Relevant graduate, postgraduate and in-service courses should be available to professionals responsible for spreading reproductive health knowledge.
... Ehmann et al. [86] give information to guide future work in "The Relationship between Health Literacy, Quality of Life, and Subjective Health: Results of a Cross-Sectional Study in a Rural Region in Germany", which will be of particular relevance to a regional integrated healthcare system. Sykes et al. [87] give insights on health literacy on the topic of infertility in "Multidimensional eHealth Literacy for Infertility", considering the concept of eHealth literacy in individuals and couples in relation to infertility. In "Validation of the Short-Form Health Literacy Questionnaire (HLS-SF12) and Its Determinants among People Living in Rural Areas in Vietnam", Duong et al. [88] validate the use of a comprehensive short-form health literacy (HL) survey tool (HLS-SF12) in Vietnam. ...
Article
Full-text available
As we write our editorial for a health literacy special issue in the midst of the international COVID-19 crisis, we take this opportunity to highlight the importance of individual, community, and population health literacy. We are not only in a "pandemic" but also an "infodemic". Health literacy is more important than ever in the face of these global health threats, which have impacted outcomes across the levels of the socio-ecological model (SEM), including individual health behaviors, family relationships, organizational behavior, state policy-making, national mortality statistics, and the international economy in the span of weeks. Our special issue sought to pull together interdisciplinary threads guided by two principles. The first was defining health literacy as essential skills and situational resources needed for people to find, understand, evaluate, communicate, and use information and services in a variety of forms across various settings throughout their life course to promote health and wellbeing. The second was the idea that enhancing health literacy in populations and systems is critical to achieving health equity. In this time of public health need across traditional borders, the inter-sectoral and international perspectives of special issue articles are more urgent than ever. A greater understanding, appreciation, and application of health literacy can support policy action on multiple levels to address major public health challenges. Health literacy should be built deliberately as a population-level resource and community asset. We have summarized the set of articles in this special issue across the levels of the SEM, hoping their thoughtful considerations and interesting findings will help to support global health and wellness and inspire future research, policy, and practice in this global public health emergency and beyond.
Article
Background Since the introduction of assisted reproductive technologies in 1978, over 2 million in vitro fertilization (IVF) babies have been born worldwide. Patients play a vital role in the success of this treatment. They are required to take fertility medication (hormone injections) to activate the ovaries to produce a sufficient number of oocytes. Later, they need to take medication to increase the chance of the embryo surviving inside the uterus. Patients are educated during an intake consultation at the start of the treatment to minimize the emotional burden and reduce noncompliance. The consultation lasts about 30 to 45 minutes and covers all essential subjects. Even though ample time and energy is spent on patient education, patients still feel anxious, unknowledgeable, and unsupported. As such, electronic health utilizing a smartphone or tablet app can offer additional support, as it allows health care professionals to provide their patients with the correct information at the right time by using push notifications. Objective This randomized controlled trial aimed to evaluate the capacity of an app to support IVF patients throughout the different phases of their treatment and assess its effectiveness. The study's primary outcome was to determine the patients’ level of satisfaction with the information provided. The secondary outcomes included their level of knowledge, ability to administer the medication, overall experienced quality of the treatment, health care consumption, and app usage. Methods This study was performed at a specialized fertility clinic of the nonacademic teaching hospital Elisabeth-TweeSteden Ziekenhuis in Tilburg, the Netherlands. Patients who were scheduled for IVF or intracytoplasmic sperm injection treatments between April 2018 and August 2019 were invited to participate in a physician-blinded, randomized controlled trial. Results In total, 54 patients participated (intervention group: n=29). Patients in the intervention group demonstrated a higher level of satisfaction on a 0 to 10 scale (mean 8.43, SD 1.03 vs mean 7.70, SD 0.66; P=.004). In addition, they were more knowledgeable about the different elements of the treatment on a 7 to 35 scale (mean 27.29, SD 2.94 vs mean 23.05, SD 2.76; P<.001). However, the difference disappeared over time. There were no differences between the two patient groups on the other outcomes. In total, 25 patients in the intervention group used the app 1425 times, an average of 57 times per patient. Conclusions Our study demonstrates that, in comparison with standard patient education, using an app to provide patients with timely information increases their level of satisfaction. Furthermore, using the app leads to a higher level of knowledge about the steps and procedures of IVF treatment. Finally, the app’s usage statistics demonstrate patients’ informational needs and their willingness to use an electronic health application as part of their treatment. Trial Registration Netherlands Trial Register (NTR) 6959; https://www.trialregister.nl/trial/6959
Article
Full-text available
Although online health communities (OHCs) are increasingly popular in public health promotion, few studies have explored the factors influencing patient e-health literacy in OHCs. This paper aims to address the above gap. Based on social cognitive theory, we identified one behavioral factor (i.e., health knowledge seeking) and one social environmental factor (i.e., social interaction ties) and proposed that both health knowledge seeking and social interaction ties directly influence patient e-health literacy; in addition, social interaction ties positively moderate the effect of health knowledge seeking on patient e-health literacy. We collected 333 valid data points and verified our three hypotheses. The empirical results provide two crucial findings. First, both health knowledge seeking and social interaction ties positively influence patient e-health literacy in OHCs. Second, social interaction ties positively moderate the effect of health knowledge seeking on patient e-health literacy. These findings firstly contribute to public health literature by exploring the mechanism of how different factors influence patient e-health literacy in OHCs and further contribute to e-health literacy literature by verifying the impact of social environmental factors.
Article
Full-text available
Background: Health literacy (HL) is not solely an individual skill but a distributed resource available within individual's social networks. This study explored the associations between individual and family member HL using two separate self-report measures of HL: the European Health Literacy Survey Questionnaire (HLS-EU-Q47) and the Communicative and Critical Health Literacy scale (CCHL). Methods: A self-administered questionnaire survey was conducted with 501 pairs of Japanese residents aged 30 to 79 and their family members whom they most often consulted for help with health issues. HL was measured using HLS-EU-Q47 and CCHL. Results: The HL scores of individuals and their family members were positively correlated for both measures. The correlation was stronger for the HLS-EU-Q47, presumably because it measures the perceived manageability of health-related tasks that implicitly depend on the availability of support for an individual. In contrast, the CCHL measures a single individual's perceived abilities. Both individual and family member CCHL scores were independently related to individual HLS-EU-Q47 scores, particularly when an individual had a family member with a higher CCHL score than his/her own. Conclusions: Limited individual ability to achieve health-related tasks might be compensated for by the higher ability of other family members. In addressing problems with limited health literacy, future studies should focus not only on the individual but also on people who can provide an individual with support.
Article
Full-text available
Background: Previous health literacy research has often focused on individual functional health literacy, ignoring the cultural contexts through which many people experience health care. Objective: We aimed to explore the nature of maternal health literacy among ethnic minority women in a low-resource setting in Vietnam. Methods: Using a qualitative approach, we conducted focus groups with 42 pregnant women, mothers, and grandmothers of children younger than age 5 years from the Thai and Hmong ethnic groups. Semi-structured interviews were conducted with key informants and thematic analysis was performed. Key Results: The findings of our thematic analysis aligned well with the concept of distributed health literacy. We found that ethnic minority women drew upon family and social networks of health literacy mediators to share knowledge and understanding, assess and evaluate information, communicate with health professionals, and support decision-making. Family members were also involved in making health decisions that had the potential to negatively affect women and children's health. Conclusions: Family members are an important source of information for ethnic minority women, and they influence decision-making. Relatives and husbands of pregnant women could be included in maternal health education programs to potentially strengthen the health literacy of the whole community. The distributed health literacy concept can be used to strengthen health promotion messages and to reduce the risk of negative health outcomes.
Article
Full-text available
This study explored how health information accessed via a 3D social virtual world and the representation of ‘self’ through the use of an avatar impact physical world health behaviour. In-depth interviews were conducted in a sample of 25 people, across 10 countries, who accessed health information in a virtual world (VW): 12 females and 13 males. Interviews were audio-recorded via private in-world voice chat or via private instant message. Thematic analysis was used to analyse the data. The social skills and practices evidenced demonstrate how the collective knowledge and skills of communities in VWs can influence improvements in individual and community health literacy through a distributed model. The findings offer support for moving away from the idea of health literacy as a set of skills which reside within an individual to a sociocultural model of health literacy. Social VWs can offer a place where people can access health information in multiple formats through the use of an avatar, which can influence changes in behaviour in the physical world and the VW. This can lead to an improvement in social skills and health literacy practices and represents a social model of health literacy.
Article
Full-text available
Background: Choosing a suitable sample size in qualitative research is an area of conceptual debate and practical uncertainty. That sample size principles, guidelines and tools have been developed to enable researchers to set, and justify the acceptability of, their sample size is an indication that the issue constitutes an important marker of the quality of qualitative research. Nevertheless, research shows that sample size sufficiency reporting is often poor, if not absent, across a range of disciplinary fields. Methods: A systematic analysis of single-interview-per-participant designs within three health-related journals from the disciplines of psychology, sociology and medicine, over a 15-year period, was conducted to examine whether and how sample sizes were justified and how sample size was characterised and discussed by authors. Data pertinent to sample size were extracted and analysed using qualitative and quantitative analytic techniques. Results: Our findings demonstrate that provision of sample size justifications in qualitative health research is limited; is not contingent on the number of interviews; and relates to the journal of publication. Defence of sample size was most frequently supported across all three journals with reference to the principle of saturation and to pragmatic considerations. Qualitative sample sizes were predominantly – and often without justification – characterised as insufficient (i.e., ‘small’) and discussed in the context of study limitations. Sample size insufficiency was seen to threaten the validity and generalizability of studies’ results, with the latter being frequently conceived in nomothetic terms. Conclusions: We recommend, firstly, that qualitative health researchers be more transparent about evaluations of their sample size sufficiency, situating these within broader and more encompassing assessments of data adequacy. Secondly, we invite researchers critically to consider how saturation parameters found in prior methodological studies and sample size community norms might best inform, and apply to, their own project and encourage that data adequacy is best appraised with reference to features that are intrinsic to the study at hand. Finally, those reviewing papers have a vital role in supporting and encouraging transparent study-specific reporting.
Article
Full-text available
Social media enables the public sharing of information. With the recent emphasis on transparency and the open sharing of information between doctors and patients, the intersection of social media and healthcare is of particular interest. Twitter is currently the most popular form of social media used for healthcare communication; here, we examine the use of Twitter in medicine and specifically explore in what capacity using Twitter to share information on treatments and research has the potential to improve care. The sharing of information on Twitter can create a communicative and collaborative atmosphere for patients, physicians, and researchers and even improve quality of care. However, risks involved with using Twitter for healthcare discourse include high rates of misinformation, difficulties in verifying the credibility of sources, overwhelmingly high volumes of information available on Twitter, concerns about professionalism, and the opportunity cost of using physician time. Ultimately, the use of Twitter in healthcare can allow patients, healthcare professionals, and researchers to be more informed, but specific guidelines for appropriate use are necessary.
Article
Full-text available
Background: The Internet is an easily accessible source of medical information. People with stigmatized illnesses such as infertility often prefer to search for health-related information on the Internet; this is particularly true of men, who are in general less likely than women to seek help for medical problems and ask fewer questions and receive less information from health care providers. There has been limited research on the extent to which online resources are geared toward the information needs of men and women. Objective: Differences between men and women in Internet searches about issues related to infertility and its treatment were examined, using data from an online survey of male and female fertility patients. Methods: Patients seeking fertility care at four fertility clinics in Montreal and Toronto, Canada, were invited to participate in an anonymous online survey. Inclusion criteria included age 18 or over and the ability to answer survey questions in either English or French. Participants completed the survey either on an iPad at the time of recruitment or via a secure link, which was emailed to them. The survey included questions about whether the respondent had searched online for information about infertility, and which of a range of topics had been the subjects of an Internet search. Chi-square analysis was used to evaluate differences between male and female respondents. Results: A total of 549 people, including 245 men (44.6%) and 304 women (55.4%), completed the survey. The average age of the participants was 36.5 years (SD=5.51). Time in treatment varied from first consultation to over 5 years of treatment. Most participants (87.9%) had searched the Internet for information about infertility, with women significantly more likely to report that they had done so (93.7% of women vs 80.3% of men, P<.001). Men and women were equally likely to search for information about causes of infertility, diagnostic tests, their own diagnosis, treatment options, and success rates. However, more women than men searched the scientific literature on infertility (88.4% vs 78.7%, P=.005), sought information about their own doctor (69.6% vs 49.2%, P<.001) as well as other fertility clinics (71.3% vs 56.5%, P=.001), and used the Internet to learn about the experience of other people with infertility concerns (70.7% vs 52.3%, P<.001). Conclusions: The majority of fertility patients consulted the Internet for information. Previous research has indicated that women tend to see themselves as primarily responsible for obtaining information about infertility and its treatment. The results of the present study suggest that they use the Internet more than men to find such information, particularly as it pertains to treatment providers. Women may also be more inclined than men to seek social support via the Internet. Further study is required to determine whether male fertility patients have particular concerns and whether these are adequately addressed by available online resources. [iproc 2016;2(1):e37]
Article
Full-text available
Background Many men lack knowledge about male infertility, and this may have consequences for their reproductive and general health. Men may prefer to seek health information online, but these sources of information vary in quality. Objective The objective of this study is to determine if online sources of information regarding male infertility are readable, suitable, and of appropriate quality for Internet users in the general population. Methods This study used a cross-sectional design to evaluate online sources resulting from search engine queries. The following categories of websites were considered: (1) Canadian fertility clinics, (2) North American organizations related to fertility, and (3) the first 20 results of Google searches using the terms “male infertility” and “male fertility preservation” set to the search locations worldwide, English Canada, and French Canada. Websites that met inclusion criteria (N=85) were assessed using readability indices, the Suitability Assessment of Materials (SAM), and the DISCERN tool. The associations between website affiliation (government, university/medical, non-profit organization, commercial/corporate, private practice) and Google placement to readability, suitability, and quality were also examined. Results None of the sampled websites met recommended levels of readability. Across all websites, the mean SAM score for suitability was 45.37% (SD 11.21), or “adequate”, while the DISCERN mean score for quality was 43.19 (SD 10.46) or “fair”. Websites that placed higher in Google obtained a higher overall score for quality with an r (58) value of -.328 and a P value of .012, but this position was not related to readability or suitability. In addition, 20% of fertility clinic websites did not include fertility information for men. Conclusions There is a lack of high quality online sources of information on male fertility. Many websites target their information to women, or fail to meet established readability criteria for the general population. Since men may prefer to seek health information online, it is important that health care professionals develop high quality sources of information on male fertility for the general population.
Article
Background: The accuracy of online medical information is variable. A 2014 Cochrane review did not support a robust improvement in male infertility after antioxidant supplementation. Many subfertile men take vitamins in hopes of improving their fertility. We sought to evaluate the content of online information for male fertility vitamins, and compare this with the published literature. Methods: We searched Google to assess online information regarding vitamins and male infertility. Websites were evaluated for authorship, content, claims and validity. We then reviewed the Recommended Daily Allowance and upper tolerable intake level for each vitamin, and compared this with the supplements actual content. Results: Four websites were posted by an academic source, 7 private clinic, 31 industry, 8 were patient blogs and 50 other sources. Reproductive claims made by websites included: Improved sperm count: 65; improved pregnancy rates: 42; improved live birth rates: 9; healthier offspring: 18. Overall, 76 websites claimed some improvement in semen parameters; 85 claimed some improved reproductive outcome. 26 websites were supported by peer-reviewed literature. None of the supplements had more than the upper tolerable intake level of any of the vitamins, but several were over the RDA, most commonly zinc, vitamin B12 and selenium. Conclusions: Many websites claim improvements in a variety of male reproductive outcomes after vitamin supplementation. These are often not supported by the medical literature. We need to provide evidence-based information to patients so that they can have realistic expectations of the benefits that vitamins may have on male reproductive outcomes.