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Nursing and Health Sciences (2007), 9, 14ā€“22
Ā© 2007 The Authors doi: 10.1111/j.1442-2018.2007.00296.x
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
Blackwell Publishing AsiaMelbourne, AustraliaNHSNursing and Health Sciences1441-07452006 Blackwell Publishing Asia Pty LtdMarch 2007911422Original Article
E-learning and online geneticsK. Gresty
et al.
Correspondence address: Karen Gresty, Principal Lecturer in Biological Aspects
of Health, School of Biological Sciences, University of Plymouth, Drake Circus,
Plymouth, Devon PL4 8AA, UK. Email: kgresty@plymouth.ac.uk
Received 20 July 2006; accepted 5 October 2006.
Research Article
Addressing the issue of e-learning and online genetics for
health professionals
Karen Gresty, PhD,1
Heather Skirton, PhD
2
and Andrew Evenden, PhD
1
1
School of Biological Sciences, University of Plymouth, Devon and 2
School of Nursing and Community Studies, Faculty of
Health and Social Work, University of Plymouth, Taunton, UK
Abstract Health-care professionals need an appropriate genetics knowledge base to care for patients and their families.
However, studies have indicated that nurses and midwives lack the requisite genetics knowledge to practice
effectively and safely, with a paucity of resources to address their educational needs. This paper describes an
action research study aimed at developing an online genetics resource for students and practitioners in a range
of health professions. A literature review of current health-care genetics education was undertaken. In the
first phase of the action cycle, a sample of nurses and midwives were surveyed using a questionnaire to dis-
cover their perceived learning needs and the acceptability of an e-learning approach. Using the findings, an
online resource for health professionals was developed, by means of a life stage structure to expedite acces-
sibility.The developmental process leading to the construction of clinical case studies in this resource (includ-
ing theory, ethical, and practical issues) and the evaluation strategy are discussed.
Key words education, e-learning, genetics, health professionals.
INTRODUCTION
Recent government initiatives have highlighted the impor-
tant role that genetic advances have made and will continue
to make in our daily lives. In the UK, a White Paper (Depart-
ment of Health, 2003) set out the Governmentā€™s strategy for
utilizing these advances for the benefit of UK citizens. The
Surgeon Generalā€™s family history initiative in the USA (US
Department of Health and Human Services, 2004) has simi-
larly raised the profile of genetics in that country. For these
initiatives to succeed, it is essential that health professionals
develop confidence in dealing with inherited disease and
using new genetics-based technologies and treatments in the
realm of common diseases.
A report by Burton (2002), based upon a series of national
stakeholder workshops, indicated that current genetics edu-
cation of health professionals in the UK is patchy and that
most non-specialist practitioners lack confidence in this sub-
ject area. Work by the Genomics Policy Unit (Kirk et al.,
2003) with key stakeholders in clinical care, professional edu-
cation, and statutory bodies resulted in an agreement on a
number of genetic competencies for nurses, midwives, and
health visitors. The final strategic report, ā€œFit for Practice in
the Genetics Eraā€ (Kirk et al., 2003), outlines a way forward
for health-care genetics education, but important decisions
still need to be taken regarding how to implement the com-
petencies in existing curricula. Jenkins et al. (2005) and Lea
and Monsen (2003) both have called for a strategy to
enhance genetic literacy among nurses as a matter of urgency.
Studies by Monsen et al. (2000) and by Tsujino et al. (2003)
reported a lack of genetics content in nursing textbooks (par-
ticularly with regard to the role of the nurse), indicating that
the topic is given a very low priority in these resources. It is
now difficult to contest the significance of genetics to health-
professional education, with Burke and Kirk (2006: 235) con-
cluding in their contemporary review that, ā€œthere is now a
substantial ā€“ and surely sufficient ā€“ body of literature dem-
onstrating the relevance and importance of genetics to nurs-
ing and midwifery practiceā€.These authors also highlight that
research into effective delivery methods is a key priority, with
a lack of focused educational genetics resources being a com-
mon theme emerging from the above articles. Clearly, in
order to produce competent practitioners who can meet the
health-care challenges of the future, this dearth of appropri-
ate resources needs to be addressed.
E-LEARNING AND HEALTH CARE
Web-based learning methods (e-learning) are being increas-
ingly used in higher education to deliver and support curric-
ulum content, and Kennedy (2001) reviewed some of the
advantages that e-learning presented to nurses in particular.
These benefits include: support for this method of delivery by
E-learning and online genetics 15
Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
employers and the government; the choice of course can be
based on content rather than geographic proximity; easy
electronic access; potential daily contact with tutors; and
opportunities for cross-cultural learning. However, Kennedy
also noted the disadvantages regarding time and space that
need to be made for this form of learning, as well as manage-
ment and support issues. Atack and Rankin (2002) carried
out a large series of surveys and interviews in a nursing con-
text and found that, while web-learning was being increas-
ingly used, the perceived lack of support for this mode of
learning was also a big issue. Atack (2003) also highlighted
the problem of being a web-based learner at home or at
work, away from the traditional support systems of an edu-
cational institution. Her research centered on qualified
nurses engaged in a postregistration course to develop case
management and supervisory skills and, despite support
problems, demonstrated improved clinical practice as a result
of e-learning. Evidence for a positive impact of e-learning on
nursing practice also was reported in an earlier study by
Niederhauser et al. (1999), who noted that clinical decision-
making was improved through the use of online group case-
work. This suggests that material that is well-designed and
presented can still offer learning benefits to health-care pro-
fessionals, even if there are outstanding support issues.
Dawes and Handscomb (2002) undertook a study into e-
learner requirements within a clinical context. Their results
indicated that to be useful in a professional environment, e-
learning programs must fit around peopleā€™s existing workā€“life
balance, not demand too large a time commitment, and that
they must be cheap or free. In addition, e-courses must be
easily available over the Internet and allow ā€œbite-sized
chunksā€ of information to be accessed. They noted that high
levels of technical skills were not required to undertake an e-
learning course (although support was important) and that e-
learning provided similar results to more traditional delivery
methods. In a recent study, a web-based genetics resource for
students was utilized to augment an existing nursing course
(Cragun et al., 2005). However, the authors concluded that,
while a single web-based lecture and tutorial provide short-
term results, different strategies might be required to achieve
a long-term benefit for practitioners. Kekkonen-Moneta and
Moneta (2002) reviewed research on different e-resources
and asssociated learning strategies in a general education
context. They highlighted results that suggest that certain
activities, such as online quizzes and bulletin board partici-
pation, yield positive learning outcomes when supplementing
traditional lecture courses (Gretes & Green, 2000; Coates &
Humphreys, 2001). Results from Herrington and Oliver
(1999) and Frear and Hirschbuhl (1999) provide evidence
that higher-order learning outcomes also can be demon-
strated by students using e-resources. Kekkonen-Moneta and
Monetaā€™s (2002: 423ā€“424) study suggests that ā€œengaging com-
puter-based and computer-mediated interactions facilitate
learningā€ and that ā€œ . . . carefully designed interactive e-
learning modules foster higher-order learning outcomesā€.
Incorporating good pedagogic practice into e-learning devel-
opments (see Beetham et al., 2004) is often overlooked.
Consequently, while it would appear that it is possible to
incorporate higher-order learning outcomes into e-resources,
the remaining challenge is to do this effectively for genetics in
a health-care context.
The debate regarding what should and should not be
included in health-care curricula (both preregistration and
postregistration) regarding genetics is ongoing and it is
unlikely that there will ever be a complete consensus across
disciplines. Consequently, in order to be proactive and to
address the lack of pertinent genetics material, an action
research methodology was adopted to explore the develop-
ment of an online resource to support genetics health educa-
tion. The main aim of this initiative was the provision of an
enhanced and sound theoretical underpinning for health-
care practitioners in order to support the development of
competencies in human genetics.This paper describes a study
to assess the acceptability and guide the development of such
a resource (entitled ā€œGeneSenseā€) at our own institution.
The associated development of practice-based genetic case
studies also is discussed, with the preliminary evaluation and
use of the resource by stakeholders.
METHODOLOGY: ACTION RESEARCH
An action research approach was considered appropriate for
this study, as one of the key aims was to improve and support
the learning experience of health-care students (and quali-
fied practitioners) regarding genetics. Denscombe (1998)
defined four main characteristics of action research that
make it directly applicable to this study. These were utilized
in a similar intervention study by Gresty and Cotton (2003)
and can be summarized as:
1. Practically based: an attempt to address a problem from
a practical perspective.
2. Involving change: a degree of change needs to be incor-
porated into advanced current practice.
3. A cyclical process: a number of iterative cycles need to
occur to develop practice.
4. Involving participation: a collaborative process between
the relevant stakeholders.
Step 1: Survey of health professionalsā€™ attitudes
As part of the action research cycle described above, the
stakeholders are asked to participate from the outset.
Although a resource for a range of professionals was clearly
needed, nurses and midwives were identified as participants
for this survey because the literature review had demon-
strated that there was clear agreement on the need for com-
petence in genetics by those groups of professionals (Kirk
et al., 2003). Consequently, students and qualified health pro-
fessionals within our host institution that were ā€œpotential
usersā€ of the online genetics resource were invited to partic-
ipate.The survey was conducted to discover what the current
attitudes of nurses and midwives towards genetics were, and
whether they would be interested in accessing an online
resource to supplement their existing knowledge (a ā€œneeds
analysisā€). An application for ethical approval was made
to the Faculty of Science Human Ethics Committee and
this approval was granted in 2004. A questionnaire was
distributed to both nursing and midwifery staff at the host
16 K. Gresty et al.
Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
institution, as well as students from both disciplines, who
gave their informed consent to take part. The survey was
used to assess the demand for such an educational resource
and to guide the development of the genetics support content
(see Appendix I for survey questions).The respondents were
asked to provide answers to Questions 5ā€“10 using a 5-point,
Likert-type scale, with 1 = strongly disagree and 5 = strongly
agree. The data from this survey were analyzed using the
SPSS package.
Questionnaire results
A total of 39 responses from midwives (25 qualified practi-
tioners and 14 students) and 54 responses from nurses (seven
qualified practitioners and 47 students) was received.
The survey results indicated that there was a strong com-
mon agreement across the groups of participants for the use
of Internet resources to update knowledge, suggesting the
utility of a web-based learning resource. All questions were
strongly rated towards the upper end of the Likert scale, but
the mean scores from the nursing discipline were statistically
higher for every question, using a Wilcoxon Signed Ranks
Test (z = āˆ’2.201, P = 0.028). The nursing respondents in this
sample were more likely to rate genetics knowledge as
important to practice, believed that conditions encountered
in practice have a genetic component, and indicated that
advances in genetics would have an influence on their prac-
tice in future. They also gave a higher weighting to the state-
ment that they found genetics difficult and would benefit
from more study of genetics than the midwifery respondents.
If the responses from the combined student groups are
compared with the combined qualified practitioner groups,
then the overall mean scores are statistically higher in the stu-
dent group than in the qualified practitioner group, using a
Wilcoxon Signed Ranks Test (z = āˆ’2.201, P = 0.028). The stu-
dents are typically younger than the qualified practitioners
and, as this factor might have an impact on the results, the
questionnaire data also were analyzed by age (Fig. 1). The
highest scores for most questions appeared to be from
respondents in the < 20 years age group; however, this was
only statistically significant for Question 10, using a Kruskalā€“
Wallis test (Ļ‡2
= 10.11, d.f. = 4, P = 0.039). This suggests a
reduced tendency with increasing age for both professions
to consider Internet resources as a good way of updating
genetic knowledge.
Question 11 asked the respondents if there was anything in
particular that they would like to see included in an online
genetics resource. There was no obvious difference between
the two disciplines regarding this aspect (the preferred fea-
tures are summarized in Appendix II). Overall, the survey
results indicated that genetics education was considered nec-
essary by both nurses and midwives and that online delivery
was highly acceptable to the majority of respondents.
Step 2: Development of the online resource using
case studies
The content of the online resource was developed in the light
of the survey findings to Question 11 in order to allow the
students to maximize their learning from contextualized
information while engaged in meaningful tasks. Adams
(2004) states that teachers need to be aware of what contrib-
utes towards good educational practice when they are devel-
oping effective, computer-based materials: to avoid low-level
learning. Adams (2004: 10) argues that when designing
online materials, ā€œa constructivist pedagogy might be more
appropriate for nursing and midwifery educationā€, as it
encourages students to engage with the material to develop
Figure 1. Mean responses by age group for total sample (n = 93). (䊏) Question 5; ( ) Question 6; (䊐) Question 7; ( ) Question 8; ( ) Ques-
tion 9; ( ) Question 10.
3
3.5
4
4.5
5
5.5
<20 20ā€“29 30ā€“39 40ā€“49 50+
Age (years)
Mean
response
*
*
*
*
*
E-learning and online genetics 17
Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
their own personal knowledge and typically involves interac-
tion and discussion with others (not necessarily true of other
pedagogic approaches).The main driver for delivering genet-
ics in this resource followed a competency-based (or ā€œasso-
ciativeā€) pedagogic approach to learning (see Beetham et al.,
2004: 13). This approach allows individuals to follow their
own pathway through the resource, with highly focused
(competency-based) learning objectives at a range of aca-
demic levels.
With the current drive for interprofessional education in
health care, it was vital to produce an online resource that
could support the delivery of genetics across a wide range of
health curricula. It also was considered important to ensure
the resource could be used by practitioners who were inter-
ested in updating their genetics knowledge in a practice con-
text. This guided our decision to embed the content (case
studies) firmly in a practice situation in order to show their
direct relevance to health care. The practice aspects of each
case study raise common issues, such as how people might
first present with diseases that have a genetic component and
what sort of care-management issues need to be considered.
Related to this area of practice, are the key associated issues
regarding the ethical, legal, and social aspects of diseases that
are genetic in origin. It was equally important to cover the
vital theory of the underlying genetic principles, without the-
ory being lost or divorced from the original health case study.
Consequently, a format was designed that allowed all these
aspects to be considered for each case study but without
overloading the reader with too much intimidating informa-
tion. Further discussion within the project team resulted in
agreement on a ā€œlife stage approachā€ to present all of the
above content within the online resource, as this had recently
been effectively used in the education literature for health
professionals (Skirton & Patch, 2002).The different stages of
the human life cycle that are highlighted in this resource
(GeneSense, 2006) are:
ā€¢ Preconception
ā€¢ Pregnancy and the perinatal period
ā€¢ Infancy
ā€¢ Childhood and adolescence
ā€¢ Adulthood
There is much evidence to support the inclusion of case
studies as a way of delivering health-related material to pro-
mote active learning. Some recent initiatives that utilize a
case-study approach for professional education include pro-
grams in the areas of medical ethics (Leget, 2004), pharma-
cology (Woodman et al., 2004), and dietetics (Smith &
Christie, 2004).The information and ideas to develop specific
case studies for GeneSense came from many sources. A
meeting was held with stakeholder health professionals from
the local genetics service in the early stages of the resourceā€™s
development in order to invite ongoing contributions and to
validate original ideas and plans. In addition, a particularly
useful resource was the Genetic Interest Groupā€™s website
(GIG, 2006), which provided information on the incidence of
genetic disorders in the UK. This allowed those genetic con-
ditions more commonly encountered to be included.The case
studies were submitted for consideration by the team mem-
bers and shared with the local genetic services, resulting in a
selection process to ensure that a broad range of conditions
were included. A typical case study incorporates the age of
the main subject, a health problem being experienced with a
genetic component, specific ethical/legal/social aspects of the
personā€™s situation, and also a practice context in which the
condition might be encountered (See Appendix III).The sur-
vey findings from Question 11 guided the development of the
support material for each case study. For example, a glossary
of genetic terminology was considered to be important and,
therefore, a link to this information is accessible on most of
the resource pages. In addition, animations to explain com-
plex concepts (e.g. non-disjunction) have been used where
relevant to illustrate the mechanisms of genetic disease.
Short, bite-size chunks of information were the preferred
mode of presentation and this format has been adopted
throughout the site, with hyperlinks to other sites containing
extended information. Interactive (and fun) learning fea-
tures, such as formative revision quizzes, are still in the pro-
cess of being developed and will be piloted in the near future
with both qualified and student health professionals at our
institution. The website structure was designed to enable the
case study to be the focus while enabling easy access to the
theoretical and clinical information that underpinned each
study. The structure of the site is illustrated in Figure 2 and
it can be accessed using the following link: http://www.
genesense.org.uk, with free registration.
Step 3: Learning the component of resource
Seven separate genetics competencies were reported by Kirk
et al. (2003), but the individual learning outcomes for aca-
demic levels 1ā€“3 were left open to interpretation, focusing
mainly on competence at the point of registration. Conse-
quently, it was decided to construct a full set of learning out-
comes in relation to each competency that could act as a
focus for learner engagement with the online resource. The
learning outcomes should be progressive and assessable for a
range of academic levels (see Table 1 for an example of our
learning outcomes at three academic levels for a single genet-
ics competency). The full set of learning outcomes and their
specific development are discussed elsewhere (Skirton et al.,
2006).
A Personal Learning Log is available from the website in
either Word or PDF format to facilitate personal learning.
The students are encouraged to select one learning outcome
at the appropriate level from the list of outcomes associated
with each competency and to work through the case-based
material until each of the outcomes selected are addressed.
Step 4: Use of the resource and preliminary evaluation
The resource is currently being used by some of our health
students away from the classroom as an adjunct to the exist-
ing module material featuring biosciences content. It is not
assessed as part of any formal qualification and verbal feed-
back from the students suggests that they are being highly
strategic in what they access in the resource in order to fulfill
their individual learning needs. In addition, the site is freely
available on the Internet and, in order to support ongoing
18 K. Gresty et al.
Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
evaluation, electronic data has been collected on the users.
Between 16 April 2004 and 9 July 2006, there were 3181 vis-
itors to the site, with 334 of these users entering through the
siteā€™s home page and completing a simple registration. This
allowed us to identify some basic occupational data, such as
ā€œstudentā€, ā€œnurseā€, etc. (see Table 2) and also registered a
cookie so that individual use could be tracked through the
site. All other users entered via a different starting point on
the site and did not register an occupation or position. Many
of these users encountered the site for the first time by enter-
ing genetic terms (e.g. Downā€™s syndrome, balanced translo-
cation, osteogenesis imperfecta, genomics for nurses) into
global search engines like Google or Yahoo.The tracking sta-
tistics indicated that, in mid-2006, the site was receiving ā‰ˆ 170
hits each week, with nearly 70% originating from North
America.
Table 1. Learning outcomes for genetic competency 6: obtain and communicate credible current information about genetics for self, clients,
and colleagues
Level 1 Level 2 Level 3
List resources available for accessing genetic
information
Employ a range of appropriate genetic
information resources to inform practice
Critically appraise information and evidence
from a range of reliable resources
Recognize the importance of regularly updating
genetics knowledge from reputable sources
Incorporate current genetic knowledge
from reputable sources into practice
Evaluate and incorporate current reputable
information into own practice
Utilize reliable genetic evidence when
communicating with patients/clients
Develop effective communication strategies
to inform clients and colleagues of relevant
genetic information
Figure 2. Outline map showing the online structure of the GeneSense resource.
Home
About
GeneSense
Site Map
Preconception
Theory Theory Theory Theory Theory Theory
Practice
Practice
Practice
Practice
Practice
Practice
Learning Learning Learning Learning Learning Learning
Social, Legal
& Ethical
Issues
Social, Legal
& Ethical
Issues
Social, Legal
& Ethical
Issues
Social, Legal
& Ethical
Issues
Social, Legal
& Ethical
Issues
Social, Legal
& Ethical
Issues
Pregnancy Infancy
Childhood &
Adolescence
Adult 1 Adult 2
Start Feedback
E-learning and online genetics 19
Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
Evaluative feedback (received verbally, by phone, and by
email) from nursing and midwifery colleagues, local genetic
service personnel, and host institution management has been
enthusiastic and highly positive. Some written comments
include:
Iā€™ve since been singing the praises of your site to my
colleagues who are responsible for the complex needs
module that the child branch students are currently
undertaking!
I want to example it as good practice at our contract
management review.
Iā€™m very happy for it to be embedded into the Midwifery
long degree and Midwifery short degree, which have the
contemporary biology component.
Iā€™ve just been on the GeneSense site: it looks like it could
be a really useful site. My only comment . . . was that I
would have liked the diagnosis/issue next to the name,
so that I could quickly identify which case studies Iā€™m
interested in.
There is also an electronic feedback facility available on
the site itself but few users currently choose to use this
option. In order to continue the action research cycle, more
formal evaluations using electronic tracking, questionnaires,
and semistructured interviews are underway to assess the use
of the site and whether it is fit for the purpose.These findings
will feed into another iteration of the research cycle. We are
currently focusing on the midwifery discipline, as staff here
are particularly keen to develop and embed this resource into
their programs in order to enhance practice placements (in
the light of new genetic screening developments). In addi-
tion, we are also working with a medical educator who wants
to explore the potential of this resource in her own schoolā€™s
curriculum.
DISCUSSION
Nurses need to know about genetics to engage effectively in
evidence-based clinical practice (Donaldson, 1999; Cashion
et al., 2004). The questionnaire findings reported as part of
this action research study confirm that the respondents in
both the nursing and midwifery groups believe that genetics
is important to clinical practice, but the perception that its
importance appears greater in the nursing than in the mid-
wifery respondents. Although nurses might care for patients
with a wide range of conditions (and common disorders are
increasingly found to have a genetic basis), midwives also
require adequate knowledge in this area. In particular, mid-
wives must be able to care competently for parents who are
making decisions with regard to antenatal screening and
genetic testing in pregnancy, as well as newborn screening. It
could be argued that the results obtained are simply related
to a small sample size. However, midwives might have more
confidence regarding their own genetics knowledge, as they
gave questions a lower difficulty rating than the nurses and
they also rated the question that they would benefit from fur-
ther study with a lower value. One explanation could be that
midwives frequently encounter genetic screening tests, so
they feel more able to deal with them. However, McGregor
(2005) indicated that the majority of midwives (93%) in her
study perceived genetics as relevant to their role but 66% felt
unprepared to conduct genetic tests. Historically, genetics has
been regarded as a highly specialist topic within medicine
and so it is possible that some midwives do not perceive
aspects of their work, such as providing antenatal screening,
as ā€œgeneticsā€. Offering antenatal and neonatal genetic
screening tests are an integral part of the role of the midwife,
so in conjunction with McGregorā€™s finding, this issue requires
further exploration.
Given that genetics education is considered important for
health professionals, the issue arises as to how it should be
best delivered (see Burke & Kirk, 2006). A qualitative and
quantitative study by Jenkins et al. (2001) identified genetics
content that could provide a template for nurse education
programs in the USA, using nurse experts and potential
nurse users as respondents.They found that 98% of their par-
ticipants believed genetics education to be important, but did
not make suggestions regarding the delivery of genetics con-
tent. Both Kirk (1999) and Lashley (1999; 2000) have drawn
attention to the problem of genetics being under-represented
in most nursing curricula and Williams et al. (2000) discussed
possible genetics education resources, but not a strategy for
integrating genetics into the nursing curriculum. It is signifi-
cant that the urgent development of electronic resources for
clinical support was one of the main recommendations by
Burton (2003) in her commissioned report to disseminate
and apply genetic knowledge to health professionals. Both
the nursing and midwifery respondents in this current study
strongly supported the idea of the Internet as being a good
way to update genetic knowledge, with students echoing the
findings of Dawes and Handscomb (2002) by preferring
small, bite-sized chunks of information. Our results suggest
that younger students (and health practitioners) value online
information delivery more than older respondents. A similar
result also was noted by Herman et al. (2005), who found that
younger women appeared to be heavier users of anAmerican
pregnancy support Internet site. Although this is only a
small-scale study and the results should not be directly
Table 2. Occupation of 334 registered GeneSense users
Occupation N
Student (host institution) 39
Student (other institution) 104
School teacher 2
Podiatrist 2
Occupational therapist 5
Nurse 42
Midwife 8
Medical doctor 12
Health visitor 5
General practitioner 2
Dietician 5
Academic 53
Other professions allied to medicine 16
Other 39
20 K. Gresty et al.
Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
transferred to a national or international scale, demographic
findings such as these might have important implications for
promoting and increasing e-resource take-up with mature
students and qualified practitioners (particularly for continu-
ing professional development purposes).
The use of case studies as a vehicle for genetics education
is supported by a study by Lea and Lawson (2000), who sug-
gested that practice-based modules that included clinical
content on screening, and ethical, legal, and social issues in
genetics testing (as well as an introductory module on basic
genetics) helped the incorporation of genetics into practical
nursing. Qualitative comments from students in this study
highlighted that the clinical and health aspects were consid-
ered important additions to a genetics resource, so it was not
just basic science theory. The nursing philosophy that genet-
ics is more than just ā€œscienceā€ is a recurring theme in recent
publications (Kirk, 1999; Lashley, 2000; Williams et al., 2000;
Skirton et al., 2004).The basic scientific theory that underpins
genetics is clearly valued and deemed necessary by our
respondents, but effective communication and enhanced
understanding in practice demands more than just under-
standing scientific concepts. Indeed, genetics-related ethical
dilemmas are part of many health professionalsā€™ current
practice and opportunities for discussion are promoted in the
wider medical literature (Parker & Lucassen, 2004). Kirk
(2000: 220) referred to this as the application of science or the
ā€œart of geneticsā€.
The significance of visual appeal in developing an online
genetics resource was clearly emphasized in our qualitative
(Question 11) results. Many students requested labeled
images or photographs to help support their learning and
these comments helped us to decide what to include in the
case study support material. The interactive aspect also was
highlighted by both the qualified practitioners and the stu-
dents with regards to 3-D animations and revision quizzes.
The importance of visual appeal in web design has been
noted in other studies, with Lindgaard et al. (2006) highlight-
ing that a negative first impression might affect how a person
engages with the site, even if it is highly usable and presents
logical information. In addition, Trindade et al. (2002) noted
the value of 3-D animations in a virtual environment, which
helped some of their science students regarding conceptual
understanding. It is clear, therefore, that simply posting tech-
nical information about genetics (or associated social issues,
etc.) in a web resource is not going to satisfy the demand
from the end-users without an interactive or strongly visual
component. Consequently, a sound pedagogic approach to
address this learning aspect (and other interactive issues)
must be adopted if low take-up rates are to be avoided.
According to Zamerowski (2000), two essential compo-
nents required for the effective integration of genetics into
undergraduate nursing education are basic science and a con-
ceptual framework or model to integrate genetics with an
interdisciplinary focus. Minasian-Batmanian et al. (2005) also
highlight the value of contextualizing scientific information
when trying to encourage health students to learn and apply
this knowledge. The competency-based learning approach,
involving case studies throughout a life stage model, would
appear to address both of these aspects. This enables health
practitioners to learn about the holistic care of families in
contexts that are familiar in everyday health care.The formal
evaluation of this genetics resource by a sample of stakehold-
ers is ongoing as part of the action research cycle and the
results will be used to inform further iterative development
of the studentsā€™ educational experience.
CONCLUSION
This project used empirical data to underpin the develop-
ment of a life stage, case-study approach to provide educa-
tion in genetics for health-care practitioners. It appears that
e-learning is an acceptable and practical way to address the
needs for genetic education in both the student and practi-
tioner population. This paper reports the early phases of an
action research cycle and demonstrates that the demand for
and the current use of the resource is high, even at this stage
of development.The formal evaluation of the resource is cur-
rently underway in order to determine its effectiveness and
value in both an academic and practice setting to both health-
care practitioners and students.
ACKNOWLEDGMENTS
We would like to thank our institution for the Teaching Fel-
lowship funding, enabling this study to be carried out. We
also would like to thank Gill Green for case study develop-
ment ideas and Laura Lindsey, who provided valuable
research assistance on this project. In addition, we also would
like to thank Professor Martin Attrill for statistical help and
David Gadd (at ICO3) for technical support.
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Ā© 2007 The Authors
Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd.
APPENDIX I
Survey questions
1. Profession
2. Status (qualified or student)
3. Age
4. Gender
5. Knowledge of genetics is important for my professional
practice
6. A high proportion of conditions/diseases/disorders
encountered in my practice area have a genetic component
7. Advances in genetic science are likely to have an influ-
ence on my practice in future
8. I find the subject of genetics difficult
9. I would benefit from more study of genetics and access
to genetic resources
10. Internet (web) resources are a good way of updating my
genetic knowledge
11. What would you like to see in an online genetics
resource
APPENDIX II
Preferred features of an online genetics resource
Simple terminology and glossary
Animations
Short, bite-size chunks
Fun interactive features; for example, revision tests
Clinical implications of diseases
Support group information
Gene technology and therapies
Genetic screening
Punnett squares
Pedigree analysis
APPENDIX III
Case study example from pregnancy and perinatal
life stage
Tom and Louise
Tom and Louise are a couple who already have had two
miscarriages. No cause has been found for these pregnancy
losses that occurred at 8 and 12 weeksā€™ gestation. Louise is
now 19 weeks pregnant in her third pregnancy and has had
fetal movements. She decided to have a maternal serum
screening test in this pregnancy and, because of a risk of
1 in 150 of the fetus having Downā€™s syndrome in this
pregnancy, she and Tom decided to have an amniocentesis
test.
The amniocentesis test has shown that the fetus has a
chromosome pattern of 47, XYY. Tom and Louise are
given this result by the genetic nurse specialist. They are
told that many children with this pattern have no physical
problems, although some of the children do have behavior
problems.
Louise is keen to continue the pregnancy. She cannot bear
to terminate and lose a baby she already feels is very much
alive and part of the family. Tom, however, feels the preg-
nancy is spoilt for him now he knows the baby is not
ā€œnormalā€.
They are referred to a pediatrician to discuss the prognosis
for the child, and return for another discussion with the
genetic nurse. Finally, Louise reluctantly agrees to the termi-
nation because she feels that Tom will never accept the baby
and her marriage will break up if she continues with the
pregnancy.

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Addressing The Issue Of E-Learning And Online Genetics For Health Professionals

  • 1. Nursing and Health Sciences (2007), 9, 14ā€“22 Ā© 2007 The Authors doi: 10.1111/j.1442-2018.2007.00296.x Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. Blackwell Publishing AsiaMelbourne, AustraliaNHSNursing and Health Sciences1441-07452006 Blackwell Publishing Asia Pty LtdMarch 2007911422Original Article E-learning and online geneticsK. Gresty et al. Correspondence address: Karen Gresty, Principal Lecturer in Biological Aspects of Health, School of Biological Sciences, University of Plymouth, Drake Circus, Plymouth, Devon PL4 8AA, UK. Email: kgresty@plymouth.ac.uk Received 20 July 2006; accepted 5 October 2006. Research Article Addressing the issue of e-learning and online genetics for health professionals Karen Gresty, PhD,1 Heather Skirton, PhD 2 and Andrew Evenden, PhD 1 1 School of Biological Sciences, University of Plymouth, Devon and 2 School of Nursing and Community Studies, Faculty of Health and Social Work, University of Plymouth, Taunton, UK Abstract Health-care professionals need an appropriate genetics knowledge base to care for patients and their families. However, studies have indicated that nurses and midwives lack the requisite genetics knowledge to practice effectively and safely, with a paucity of resources to address their educational needs. This paper describes an action research study aimed at developing an online genetics resource for students and practitioners in a range of health professions. A literature review of current health-care genetics education was undertaken. In the first phase of the action cycle, a sample of nurses and midwives were surveyed using a questionnaire to dis- cover their perceived learning needs and the acceptability of an e-learning approach. Using the findings, an online resource for health professionals was developed, by means of a life stage structure to expedite acces- sibility.The developmental process leading to the construction of clinical case studies in this resource (includ- ing theory, ethical, and practical issues) and the evaluation strategy are discussed. Key words education, e-learning, genetics, health professionals. INTRODUCTION Recent government initiatives have highlighted the impor- tant role that genetic advances have made and will continue to make in our daily lives. In the UK, a White Paper (Depart- ment of Health, 2003) set out the Governmentā€™s strategy for utilizing these advances for the benefit of UK citizens. The Surgeon Generalā€™s family history initiative in the USA (US Department of Health and Human Services, 2004) has simi- larly raised the profile of genetics in that country. For these initiatives to succeed, it is essential that health professionals develop confidence in dealing with inherited disease and using new genetics-based technologies and treatments in the realm of common diseases. A report by Burton (2002), based upon a series of national stakeholder workshops, indicated that current genetics edu- cation of health professionals in the UK is patchy and that most non-specialist practitioners lack confidence in this sub- ject area. Work by the Genomics Policy Unit (Kirk et al., 2003) with key stakeholders in clinical care, professional edu- cation, and statutory bodies resulted in an agreement on a number of genetic competencies for nurses, midwives, and health visitors. The final strategic report, ā€œFit for Practice in the Genetics Eraā€ (Kirk et al., 2003), outlines a way forward for health-care genetics education, but important decisions still need to be taken regarding how to implement the com- petencies in existing curricula. Jenkins et al. (2005) and Lea and Monsen (2003) both have called for a strategy to enhance genetic literacy among nurses as a matter of urgency. Studies by Monsen et al. (2000) and by Tsujino et al. (2003) reported a lack of genetics content in nursing textbooks (par- ticularly with regard to the role of the nurse), indicating that the topic is given a very low priority in these resources. It is now difficult to contest the significance of genetics to health- professional education, with Burke and Kirk (2006: 235) con- cluding in their contemporary review that, ā€œthere is now a substantial ā€“ and surely sufficient ā€“ body of literature dem- onstrating the relevance and importance of genetics to nurs- ing and midwifery practiceā€.These authors also highlight that research into effective delivery methods is a key priority, with a lack of focused educational genetics resources being a com- mon theme emerging from the above articles. Clearly, in order to produce competent practitioners who can meet the health-care challenges of the future, this dearth of appropri- ate resources needs to be addressed. E-LEARNING AND HEALTH CARE Web-based learning methods (e-learning) are being increas- ingly used in higher education to deliver and support curric- ulum content, and Kennedy (2001) reviewed some of the advantages that e-learning presented to nurses in particular. These benefits include: support for this method of delivery by
  • 2. E-learning and online genetics 15 Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. employers and the government; the choice of course can be based on content rather than geographic proximity; easy electronic access; potential daily contact with tutors; and opportunities for cross-cultural learning. However, Kennedy also noted the disadvantages regarding time and space that need to be made for this form of learning, as well as manage- ment and support issues. Atack and Rankin (2002) carried out a large series of surveys and interviews in a nursing con- text and found that, while web-learning was being increas- ingly used, the perceived lack of support for this mode of learning was also a big issue. Atack (2003) also highlighted the problem of being a web-based learner at home or at work, away from the traditional support systems of an edu- cational institution. Her research centered on qualified nurses engaged in a postregistration course to develop case management and supervisory skills and, despite support problems, demonstrated improved clinical practice as a result of e-learning. Evidence for a positive impact of e-learning on nursing practice also was reported in an earlier study by Niederhauser et al. (1999), who noted that clinical decision- making was improved through the use of online group case- work. This suggests that material that is well-designed and presented can still offer learning benefits to health-care pro- fessionals, even if there are outstanding support issues. Dawes and Handscomb (2002) undertook a study into e- learner requirements within a clinical context. Their results indicated that to be useful in a professional environment, e- learning programs must fit around peopleā€™s existing workā€“life balance, not demand too large a time commitment, and that they must be cheap or free. In addition, e-courses must be easily available over the Internet and allow ā€œbite-sized chunksā€ of information to be accessed. They noted that high levels of technical skills were not required to undertake an e- learning course (although support was important) and that e- learning provided similar results to more traditional delivery methods. In a recent study, a web-based genetics resource for students was utilized to augment an existing nursing course (Cragun et al., 2005). However, the authors concluded that, while a single web-based lecture and tutorial provide short- term results, different strategies might be required to achieve a long-term benefit for practitioners. Kekkonen-Moneta and Moneta (2002) reviewed research on different e-resources and asssociated learning strategies in a general education context. They highlighted results that suggest that certain activities, such as online quizzes and bulletin board partici- pation, yield positive learning outcomes when supplementing traditional lecture courses (Gretes & Green, 2000; Coates & Humphreys, 2001). Results from Herrington and Oliver (1999) and Frear and Hirschbuhl (1999) provide evidence that higher-order learning outcomes also can be demon- strated by students using e-resources. Kekkonen-Moneta and Monetaā€™s (2002: 423ā€“424) study suggests that ā€œengaging com- puter-based and computer-mediated interactions facilitate learningā€ and that ā€œ . . . carefully designed interactive e- learning modules foster higher-order learning outcomesā€. Incorporating good pedagogic practice into e-learning devel- opments (see Beetham et al., 2004) is often overlooked. Consequently, while it would appear that it is possible to incorporate higher-order learning outcomes into e-resources, the remaining challenge is to do this effectively for genetics in a health-care context. The debate regarding what should and should not be included in health-care curricula (both preregistration and postregistration) regarding genetics is ongoing and it is unlikely that there will ever be a complete consensus across disciplines. Consequently, in order to be proactive and to address the lack of pertinent genetics material, an action research methodology was adopted to explore the develop- ment of an online resource to support genetics health educa- tion. The main aim of this initiative was the provision of an enhanced and sound theoretical underpinning for health- care practitioners in order to support the development of competencies in human genetics.This paper describes a study to assess the acceptability and guide the development of such a resource (entitled ā€œGeneSenseā€) at our own institution. The associated development of practice-based genetic case studies also is discussed, with the preliminary evaluation and use of the resource by stakeholders. METHODOLOGY: ACTION RESEARCH An action research approach was considered appropriate for this study, as one of the key aims was to improve and support the learning experience of health-care students (and quali- fied practitioners) regarding genetics. Denscombe (1998) defined four main characteristics of action research that make it directly applicable to this study. These were utilized in a similar intervention study by Gresty and Cotton (2003) and can be summarized as: 1. Practically based: an attempt to address a problem from a practical perspective. 2. Involving change: a degree of change needs to be incor- porated into advanced current practice. 3. A cyclical process: a number of iterative cycles need to occur to develop practice. 4. Involving participation: a collaborative process between the relevant stakeholders. Step 1: Survey of health professionalsā€™ attitudes As part of the action research cycle described above, the stakeholders are asked to participate from the outset. Although a resource for a range of professionals was clearly needed, nurses and midwives were identified as participants for this survey because the literature review had demon- strated that there was clear agreement on the need for com- petence in genetics by those groups of professionals (Kirk et al., 2003). Consequently, students and qualified health pro- fessionals within our host institution that were ā€œpotential usersā€ of the online genetics resource were invited to partic- ipate.The survey was conducted to discover what the current attitudes of nurses and midwives towards genetics were, and whether they would be interested in accessing an online resource to supplement their existing knowledge (a ā€œneeds analysisā€). An application for ethical approval was made to the Faculty of Science Human Ethics Committee and this approval was granted in 2004. A questionnaire was distributed to both nursing and midwifery staff at the host
  • 3. 16 K. Gresty et al. Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. institution, as well as students from both disciplines, who gave their informed consent to take part. The survey was used to assess the demand for such an educational resource and to guide the development of the genetics support content (see Appendix I for survey questions).The respondents were asked to provide answers to Questions 5ā€“10 using a 5-point, Likert-type scale, with 1 = strongly disagree and 5 = strongly agree. The data from this survey were analyzed using the SPSS package. Questionnaire results A total of 39 responses from midwives (25 qualified practi- tioners and 14 students) and 54 responses from nurses (seven qualified practitioners and 47 students) was received. The survey results indicated that there was a strong com- mon agreement across the groups of participants for the use of Internet resources to update knowledge, suggesting the utility of a web-based learning resource. All questions were strongly rated towards the upper end of the Likert scale, but the mean scores from the nursing discipline were statistically higher for every question, using a Wilcoxon Signed Ranks Test (z = āˆ’2.201, P = 0.028). The nursing respondents in this sample were more likely to rate genetics knowledge as important to practice, believed that conditions encountered in practice have a genetic component, and indicated that advances in genetics would have an influence on their prac- tice in future. They also gave a higher weighting to the state- ment that they found genetics difficult and would benefit from more study of genetics than the midwifery respondents. If the responses from the combined student groups are compared with the combined qualified practitioner groups, then the overall mean scores are statistically higher in the stu- dent group than in the qualified practitioner group, using a Wilcoxon Signed Ranks Test (z = āˆ’2.201, P = 0.028). The stu- dents are typically younger than the qualified practitioners and, as this factor might have an impact on the results, the questionnaire data also were analyzed by age (Fig. 1). The highest scores for most questions appeared to be from respondents in the < 20 years age group; however, this was only statistically significant for Question 10, using a Kruskalā€“ Wallis test (Ļ‡2 = 10.11, d.f. = 4, P = 0.039). This suggests a reduced tendency with increasing age for both professions to consider Internet resources as a good way of updating genetic knowledge. Question 11 asked the respondents if there was anything in particular that they would like to see included in an online genetics resource. There was no obvious difference between the two disciplines regarding this aspect (the preferred fea- tures are summarized in Appendix II). Overall, the survey results indicated that genetics education was considered nec- essary by both nurses and midwives and that online delivery was highly acceptable to the majority of respondents. Step 2: Development of the online resource using case studies The content of the online resource was developed in the light of the survey findings to Question 11 in order to allow the students to maximize their learning from contextualized information while engaged in meaningful tasks. Adams (2004) states that teachers need to be aware of what contrib- utes towards good educational practice when they are devel- oping effective, computer-based materials: to avoid low-level learning. Adams (2004: 10) argues that when designing online materials, ā€œa constructivist pedagogy might be more appropriate for nursing and midwifery educationā€, as it encourages students to engage with the material to develop Figure 1. Mean responses by age group for total sample (n = 93). (䊏) Question 5; ( ) Question 6; (䊐) Question 7; ( ) Question 8; ( ) Ques- tion 9; ( ) Question 10. 3 3.5 4 4.5 5 5.5 <20 20ā€“29 30ā€“39 40ā€“49 50+ Age (years) Mean response * * * * *
  • 4. E-learning and online genetics 17 Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. their own personal knowledge and typically involves interac- tion and discussion with others (not necessarily true of other pedagogic approaches).The main driver for delivering genet- ics in this resource followed a competency-based (or ā€œasso- ciativeā€) pedagogic approach to learning (see Beetham et al., 2004: 13). This approach allows individuals to follow their own pathway through the resource, with highly focused (competency-based) learning objectives at a range of aca- demic levels. With the current drive for interprofessional education in health care, it was vital to produce an online resource that could support the delivery of genetics across a wide range of health curricula. It also was considered important to ensure the resource could be used by practitioners who were inter- ested in updating their genetics knowledge in a practice con- text. This guided our decision to embed the content (case studies) firmly in a practice situation in order to show their direct relevance to health care. The practice aspects of each case study raise common issues, such as how people might first present with diseases that have a genetic component and what sort of care-management issues need to be considered. Related to this area of practice, are the key associated issues regarding the ethical, legal, and social aspects of diseases that are genetic in origin. It was equally important to cover the vital theory of the underlying genetic principles, without the- ory being lost or divorced from the original health case study. Consequently, a format was designed that allowed all these aspects to be considered for each case study but without overloading the reader with too much intimidating informa- tion. Further discussion within the project team resulted in agreement on a ā€œlife stage approachā€ to present all of the above content within the online resource, as this had recently been effectively used in the education literature for health professionals (Skirton & Patch, 2002).The different stages of the human life cycle that are highlighted in this resource (GeneSense, 2006) are: ā€¢ Preconception ā€¢ Pregnancy and the perinatal period ā€¢ Infancy ā€¢ Childhood and adolescence ā€¢ Adulthood There is much evidence to support the inclusion of case studies as a way of delivering health-related material to pro- mote active learning. Some recent initiatives that utilize a case-study approach for professional education include pro- grams in the areas of medical ethics (Leget, 2004), pharma- cology (Woodman et al., 2004), and dietetics (Smith & Christie, 2004).The information and ideas to develop specific case studies for GeneSense came from many sources. A meeting was held with stakeholder health professionals from the local genetics service in the early stages of the resourceā€™s development in order to invite ongoing contributions and to validate original ideas and plans. In addition, a particularly useful resource was the Genetic Interest Groupā€™s website (GIG, 2006), which provided information on the incidence of genetic disorders in the UK. This allowed those genetic con- ditions more commonly encountered to be included.The case studies were submitted for consideration by the team mem- bers and shared with the local genetic services, resulting in a selection process to ensure that a broad range of conditions were included. A typical case study incorporates the age of the main subject, a health problem being experienced with a genetic component, specific ethical/legal/social aspects of the personā€™s situation, and also a practice context in which the condition might be encountered (See Appendix III).The sur- vey findings from Question 11 guided the development of the support material for each case study. For example, a glossary of genetic terminology was considered to be important and, therefore, a link to this information is accessible on most of the resource pages. In addition, animations to explain com- plex concepts (e.g. non-disjunction) have been used where relevant to illustrate the mechanisms of genetic disease. Short, bite-size chunks of information were the preferred mode of presentation and this format has been adopted throughout the site, with hyperlinks to other sites containing extended information. Interactive (and fun) learning fea- tures, such as formative revision quizzes, are still in the pro- cess of being developed and will be piloted in the near future with both qualified and student health professionals at our institution. The website structure was designed to enable the case study to be the focus while enabling easy access to the theoretical and clinical information that underpinned each study. The structure of the site is illustrated in Figure 2 and it can be accessed using the following link: http://www. genesense.org.uk, with free registration. Step 3: Learning the component of resource Seven separate genetics competencies were reported by Kirk et al. (2003), but the individual learning outcomes for aca- demic levels 1ā€“3 were left open to interpretation, focusing mainly on competence at the point of registration. Conse- quently, it was decided to construct a full set of learning out- comes in relation to each competency that could act as a focus for learner engagement with the online resource. The learning outcomes should be progressive and assessable for a range of academic levels (see Table 1 for an example of our learning outcomes at three academic levels for a single genet- ics competency). The full set of learning outcomes and their specific development are discussed elsewhere (Skirton et al., 2006). A Personal Learning Log is available from the website in either Word or PDF format to facilitate personal learning. The students are encouraged to select one learning outcome at the appropriate level from the list of outcomes associated with each competency and to work through the case-based material until each of the outcomes selected are addressed. Step 4: Use of the resource and preliminary evaluation The resource is currently being used by some of our health students away from the classroom as an adjunct to the exist- ing module material featuring biosciences content. It is not assessed as part of any formal qualification and verbal feed- back from the students suggests that they are being highly strategic in what they access in the resource in order to fulfill their individual learning needs. In addition, the site is freely available on the Internet and, in order to support ongoing
  • 5. 18 K. Gresty et al. Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. evaluation, electronic data has been collected on the users. Between 16 April 2004 and 9 July 2006, there were 3181 vis- itors to the site, with 334 of these users entering through the siteā€™s home page and completing a simple registration. This allowed us to identify some basic occupational data, such as ā€œstudentā€, ā€œnurseā€, etc. (see Table 2) and also registered a cookie so that individual use could be tracked through the site. All other users entered via a different starting point on the site and did not register an occupation or position. Many of these users encountered the site for the first time by enter- ing genetic terms (e.g. Downā€™s syndrome, balanced translo- cation, osteogenesis imperfecta, genomics for nurses) into global search engines like Google or Yahoo.The tracking sta- tistics indicated that, in mid-2006, the site was receiving ā‰ˆ 170 hits each week, with nearly 70% originating from North America. Table 1. Learning outcomes for genetic competency 6: obtain and communicate credible current information about genetics for self, clients, and colleagues Level 1 Level 2 Level 3 List resources available for accessing genetic information Employ a range of appropriate genetic information resources to inform practice Critically appraise information and evidence from a range of reliable resources Recognize the importance of regularly updating genetics knowledge from reputable sources Incorporate current genetic knowledge from reputable sources into practice Evaluate and incorporate current reputable information into own practice Utilize reliable genetic evidence when communicating with patients/clients Develop effective communication strategies to inform clients and colleagues of relevant genetic information Figure 2. Outline map showing the online structure of the GeneSense resource. Home About GeneSense Site Map Preconception Theory Theory Theory Theory Theory Theory Practice Practice Practice Practice Practice Practice Learning Learning Learning Learning Learning Learning Social, Legal & Ethical Issues Social, Legal & Ethical Issues Social, Legal & Ethical Issues Social, Legal & Ethical Issues Social, Legal & Ethical Issues Social, Legal & Ethical Issues Pregnancy Infancy Childhood & Adolescence Adult 1 Adult 2 Start Feedback
  • 6. E-learning and online genetics 19 Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. Evaluative feedback (received verbally, by phone, and by email) from nursing and midwifery colleagues, local genetic service personnel, and host institution management has been enthusiastic and highly positive. Some written comments include: Iā€™ve since been singing the praises of your site to my colleagues who are responsible for the complex needs module that the child branch students are currently undertaking! I want to example it as good practice at our contract management review. Iā€™m very happy for it to be embedded into the Midwifery long degree and Midwifery short degree, which have the contemporary biology component. Iā€™ve just been on the GeneSense site: it looks like it could be a really useful site. My only comment . . . was that I would have liked the diagnosis/issue next to the name, so that I could quickly identify which case studies Iā€™m interested in. There is also an electronic feedback facility available on the site itself but few users currently choose to use this option. In order to continue the action research cycle, more formal evaluations using electronic tracking, questionnaires, and semistructured interviews are underway to assess the use of the site and whether it is fit for the purpose.These findings will feed into another iteration of the research cycle. We are currently focusing on the midwifery discipline, as staff here are particularly keen to develop and embed this resource into their programs in order to enhance practice placements (in the light of new genetic screening developments). In addi- tion, we are also working with a medical educator who wants to explore the potential of this resource in her own schoolā€™s curriculum. DISCUSSION Nurses need to know about genetics to engage effectively in evidence-based clinical practice (Donaldson, 1999; Cashion et al., 2004). The questionnaire findings reported as part of this action research study confirm that the respondents in both the nursing and midwifery groups believe that genetics is important to clinical practice, but the perception that its importance appears greater in the nursing than in the mid- wifery respondents. Although nurses might care for patients with a wide range of conditions (and common disorders are increasingly found to have a genetic basis), midwives also require adequate knowledge in this area. In particular, mid- wives must be able to care competently for parents who are making decisions with regard to antenatal screening and genetic testing in pregnancy, as well as newborn screening. It could be argued that the results obtained are simply related to a small sample size. However, midwives might have more confidence regarding their own genetics knowledge, as they gave questions a lower difficulty rating than the nurses and they also rated the question that they would benefit from fur- ther study with a lower value. One explanation could be that midwives frequently encounter genetic screening tests, so they feel more able to deal with them. However, McGregor (2005) indicated that the majority of midwives (93%) in her study perceived genetics as relevant to their role but 66% felt unprepared to conduct genetic tests. Historically, genetics has been regarded as a highly specialist topic within medicine and so it is possible that some midwives do not perceive aspects of their work, such as providing antenatal screening, as ā€œgeneticsā€. Offering antenatal and neonatal genetic screening tests are an integral part of the role of the midwife, so in conjunction with McGregorā€™s finding, this issue requires further exploration. Given that genetics education is considered important for health professionals, the issue arises as to how it should be best delivered (see Burke & Kirk, 2006). A qualitative and quantitative study by Jenkins et al. (2001) identified genetics content that could provide a template for nurse education programs in the USA, using nurse experts and potential nurse users as respondents.They found that 98% of their par- ticipants believed genetics education to be important, but did not make suggestions regarding the delivery of genetics con- tent. Both Kirk (1999) and Lashley (1999; 2000) have drawn attention to the problem of genetics being under-represented in most nursing curricula and Williams et al. (2000) discussed possible genetics education resources, but not a strategy for integrating genetics into the nursing curriculum. It is signifi- cant that the urgent development of electronic resources for clinical support was one of the main recommendations by Burton (2003) in her commissioned report to disseminate and apply genetic knowledge to health professionals. Both the nursing and midwifery respondents in this current study strongly supported the idea of the Internet as being a good way to update genetic knowledge, with students echoing the findings of Dawes and Handscomb (2002) by preferring small, bite-sized chunks of information. Our results suggest that younger students (and health practitioners) value online information delivery more than older respondents. A similar result also was noted by Herman et al. (2005), who found that younger women appeared to be heavier users of anAmerican pregnancy support Internet site. Although this is only a small-scale study and the results should not be directly Table 2. Occupation of 334 registered GeneSense users Occupation N Student (host institution) 39 Student (other institution) 104 School teacher 2 Podiatrist 2 Occupational therapist 5 Nurse 42 Midwife 8 Medical doctor 12 Health visitor 5 General practitioner 2 Dietician 5 Academic 53 Other professions allied to medicine 16 Other 39
  • 7. 20 K. Gresty et al. Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. transferred to a national or international scale, demographic findings such as these might have important implications for promoting and increasing e-resource take-up with mature students and qualified practitioners (particularly for continu- ing professional development purposes). The use of case studies as a vehicle for genetics education is supported by a study by Lea and Lawson (2000), who sug- gested that practice-based modules that included clinical content on screening, and ethical, legal, and social issues in genetics testing (as well as an introductory module on basic genetics) helped the incorporation of genetics into practical nursing. Qualitative comments from students in this study highlighted that the clinical and health aspects were consid- ered important additions to a genetics resource, so it was not just basic science theory. The nursing philosophy that genet- ics is more than just ā€œscienceā€ is a recurring theme in recent publications (Kirk, 1999; Lashley, 2000; Williams et al., 2000; Skirton et al., 2004).The basic scientific theory that underpins genetics is clearly valued and deemed necessary by our respondents, but effective communication and enhanced understanding in practice demands more than just under- standing scientific concepts. Indeed, genetics-related ethical dilemmas are part of many health professionalsā€™ current practice and opportunities for discussion are promoted in the wider medical literature (Parker & Lucassen, 2004). Kirk (2000: 220) referred to this as the application of science or the ā€œart of geneticsā€. The significance of visual appeal in developing an online genetics resource was clearly emphasized in our qualitative (Question 11) results. Many students requested labeled images or photographs to help support their learning and these comments helped us to decide what to include in the case study support material. The interactive aspect also was highlighted by both the qualified practitioners and the stu- dents with regards to 3-D animations and revision quizzes. The importance of visual appeal in web design has been noted in other studies, with Lindgaard et al. (2006) highlight- ing that a negative first impression might affect how a person engages with the site, even if it is highly usable and presents logical information. In addition, Trindade et al. (2002) noted the value of 3-D animations in a virtual environment, which helped some of their science students regarding conceptual understanding. It is clear, therefore, that simply posting tech- nical information about genetics (or associated social issues, etc.) in a web resource is not going to satisfy the demand from the end-users without an interactive or strongly visual component. Consequently, a sound pedagogic approach to address this learning aspect (and other interactive issues) must be adopted if low take-up rates are to be avoided. According to Zamerowski (2000), two essential compo- nents required for the effective integration of genetics into undergraduate nursing education are basic science and a con- ceptual framework or model to integrate genetics with an interdisciplinary focus. Minasian-Batmanian et al. (2005) also highlight the value of contextualizing scientific information when trying to encourage health students to learn and apply this knowledge. The competency-based learning approach, involving case studies throughout a life stage model, would appear to address both of these aspects. This enables health practitioners to learn about the holistic care of families in contexts that are familiar in everyday health care.The formal evaluation of this genetics resource by a sample of stakehold- ers is ongoing as part of the action research cycle and the results will be used to inform further iterative development of the studentsā€™ educational experience. CONCLUSION This project used empirical data to underpin the develop- ment of a life stage, case-study approach to provide educa- tion in genetics for health-care practitioners. It appears that e-learning is an acceptable and practical way to address the needs for genetic education in both the student and practi- tioner population. This paper reports the early phases of an action research cycle and demonstrates that the demand for and the current use of the resource is high, even at this stage of development.The formal evaluation of the resource is cur- rently underway in order to determine its effectiveness and value in both an academic and practice setting to both health- care practitioners and students. ACKNOWLEDGMENTS We would like to thank our institution for the Teaching Fel- lowship funding, enabling this study to be carried out. We also would like to thank Gill Green for case study develop- ment ideas and Laura Lindsey, who provided valuable research assistance on this project. In addition, we also would like to thank Professor Martin Attrill for statistical help and David Gadd (at ICO3) for technical support. REFERENCES Adams AM. Pedagogical underpinnings of computer-based learning. J. Adv. Nurs. 2004; 46: 5ā€“12. Atack L. Becoming a web-based learner. J. Adv. Nurs. 2003; 44: 289ā€“ 297. 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  • 9. 22 K. Gresty et al. Ā© 2007 The Authors Journal Compilation Ā© 2007 Blackwell Publishing Asia Pty Ltd. APPENDIX I Survey questions 1. Profession 2. Status (qualified or student) 3. Age 4. Gender 5. Knowledge of genetics is important for my professional practice 6. A high proportion of conditions/diseases/disorders encountered in my practice area have a genetic component 7. Advances in genetic science are likely to have an influ- ence on my practice in future 8. I find the subject of genetics difficult 9. I would benefit from more study of genetics and access to genetic resources 10. Internet (web) resources are a good way of updating my genetic knowledge 11. What would you like to see in an online genetics resource APPENDIX II Preferred features of an online genetics resource Simple terminology and glossary Animations Short, bite-size chunks Fun interactive features; for example, revision tests Clinical implications of diseases Support group information Gene technology and therapies Genetic screening Punnett squares Pedigree analysis APPENDIX III Case study example from pregnancy and perinatal life stage Tom and Louise Tom and Louise are a couple who already have had two miscarriages. No cause has been found for these pregnancy losses that occurred at 8 and 12 weeksā€™ gestation. Louise is now 19 weeks pregnant in her third pregnancy and has had fetal movements. She decided to have a maternal serum screening test in this pregnancy and, because of a risk of 1 in 150 of the fetus having Downā€™s syndrome in this pregnancy, she and Tom decided to have an amniocentesis test. The amniocentesis test has shown that the fetus has a chromosome pattern of 47, XYY. Tom and Louise are given this result by the genetic nurse specialist. They are told that many children with this pattern have no physical problems, although some of the children do have behavior problems. Louise is keen to continue the pregnancy. She cannot bear to terminate and lose a baby she already feels is very much alive and part of the family. Tom, however, feels the preg- nancy is spoilt for him now he knows the baby is not ā€œnormalā€. They are referred to a pediatrician to discuss the prognosis for the child, and return for another discussion with the genetic nurse. Finally, Louise reluctantly agrees to the termi- nation because she feels that Tom will never accept the baby and her marriage will break up if she continues with the pregnancy.