Multimedia messages in genetics: Design, development, and evaluation of a computer-based instructional resource for secondary school students in a Tay Sachs disease carrier screening program

Gason, Alexandra A; Aitken, MaryAnne; Delatycki, Martin B.; Sheffield, Edith; Metcalfe, Sylvia

doi:10.1097/01.gim.0000132681.36771.63

Cited by 12 publications

(15 citation statements)

References 19 publications

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“…Knowledge acquisition was equivalent or greater in e-tool user groups whether the tool was used as an adjunct to GC (44,46,53,55,56) or was compared to either GC alone (39,42,43) or to an educational booklet (45). A surprising exception was the study by Kaphingst et al (48) that aimed to teach the abstract concept of gene-environment interaction using virtual reality via either active learning or didactic learning.…”

Section: E-tool Intervention Resultsmentioning

confidence: 99%

“…The most common design (five studies) compared conventional GC alone to GC used with an e-tool; (51)(52)(53)(54)(55)(56)(57) three studies compared counselling by another health care professional (HCP) alone to counselling plus an e-tool (44,49,50,58). Two studies performed a direct comparison between GC and an e-tool (39,42,43). Research aims were predominantly related to determining the acceptability of the e-tool and its efficacy as measured by knowledge acquisition or some aspect of decision-making.…”

Section: Summary Of Study Designsmentioning

confidence: 99%

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Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Birch

2014

Clinical Genetics

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In-person genetic counselling (GC) is the model typically used to provide patients with information regarding their genetic testing options. Current and emerging demand for genetic testing may overburden the health care system and exceed the available numbers of genetic counsellors. Furthermore, GC is not always available at times and places convenient for patients. There is little evidence that the in-person model alone is always optimal and alternatives to in-person GC have been studied in genetics and other areas of health care. This review summarizes the published evidence between 1994 and March 2014 for interactive e-learning and decisional support e-tools that could be used in pre-test GC. A total of 21 papers from 15 heterogeneous studies of interactive e-learning tools, with or without decision aids, were reviewed. Study populations, designs, and outcomes varied widely but most used an e-tool as an adjunct to conventional GC. Knowledge acquisition and decisional comfort were achieved and the e-tools were generally well-accepted by users. In a time when health care budgets are constrained and availability of GC is limited, research is needed to determine the specific circumstances in which e-tools might replace or supplement some of the functions of genetic counsellors.

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Section: E-tool Intervention Resultsmentioning

confidence: 99%

Section: Summary Of Study Designsmentioning

confidence: 99%

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Birch

2014

Clinical Genetics

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“…We previously discussed the added benefits of the use of CBI in educational sessions such as delivery of a consistent educational message, short delivery time, allowance of selfpaced learning, and minimum financial and resource commitment. 15 Cheekbrush sampling is preferred by students…”

Section: Discussionmentioning

confidence: 99%

“…Students were randomly divided into two groups to receive a computer-based instruction (CBI) resource 15 or an oral presentation with visual aids. 14 The content of the CBI resource may be found at www.taysachs.net.…”

Section: Educational Interventionmentioning

confidence: 99%

“…Previously we published information on the design and development of a computerbased resource and compared knowledge between students using this resource and those given the traditional oral presentation. 15 This article presents data collected over a 2-year period and includes the measurement of several parameters along with qualitative, interview data and a comparison between sampling procedures.…”

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confidence: 99%

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Tay Sachs disease carrier screening in schools: Educational alternatives and cheekbrush sampling

Gason

Metcalfe

Delatycki

et al. 2005

Genetics in Medicine

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computer-based resource versus an oral educational presentation and (2) blood sampling for enzyme and genetic testing versus cheekbrush testing for genetic sampling alone. Results: The education session was effective in significantly increasing students' knowledge (10.5% Ϯ 1.2%, P Ͻ .0001) and decreasing their anxiety about being a carrier (Ϫ12.2% Ϯ 1.6%, P Ͻ .0001). For the students, no significant differences were found between the computer-based resource and oral presentation. There were significantly more students accepting a carrier test and anxiety was lower when a cheekbrush test was offered compared with when a blood test was offered. Conclusions:Computer-based instruction is equally effective, in addition to offering advantages of self-paced learning and minimization of human resources as an oral presentation within a genetic carrier screening program.Cheekbrush sampling is preferred to blood sampling and should be implemented into current practices for offering genetic screening programs. These results present alternatives to practices for genetic screening reflecting the current developing technology. Genet Med 2005:7(9):626-632.

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Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis

Lang

Stark

Acharya

et al. 2009

American J of Med Genetics Pt A

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Illinois introduced mandatory newborn screening (NBS) for sickle cell disease (SCD) in 1989 and for cystic fibrosis (CF) in 2008. We examined maternal understanding of NBS for SCD and CF, and their knowledge of the genetics, symptoms and treatments of both conditions. Our methods consisted of conducting interviews of inpatient post-partum women (>18 years and English speaking). Our results showed that of the 388 eligible participants, 34 self-identified as sickle cell carriers, 1 with SCD and 1 as a CF carrier. Almost 3/4 were African American (282/387). Although all but 5 women had prenatal care, only 35% (133/378) recalled their prenatal care provider mentioning NBS, and only 56% (217/388) of participants recalled nursery staff mentioning NBS. There was more self-reported familiarity with SCD (3.32/5) than CF (1.97/5, p<0.001). Over 2/3 (260/388) of participants could not answer CF knowledge questions because they had never heard of CF. Among those who had heard of the conditions, mean knowledge scores were 66% for SCD (n=372) and 63% for CF (n=128). Bivariate analysis identified education, age, race, marital status, and insurance status as statistically significant. After linear regression education remained significant for both conditions. We conclude that in a sample of predominantly African American post-partum women, we found poor understanding of NBS, greater familiarity with SCD, and significant knowledge gaps for both SCD and CF. There are many missed educational opportunities for educating parents about NBS and specific conditions included in NBS panels in both the obstetric clinics and the nursery.

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Multimedia messages in genetics: Design, development, and evaluation of a computer-based instructional resource for secondary school students in a Tay Sachs disease carrier screening program

Cited by 12 publications

References 19 publications

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Tay Sachs disease carrier screening in schools: Educational alternatives and cheekbrush sampling

Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis

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