Descriptive information about Down syndrome: a content analysis of serum screening leaflets

Bryant, Louise D.; Murray, Jenni; Green, Josephine M.; Hewison, Jenny; Sehmi, I. K.; Ellis, Andy

doi:10.1002/pd.179

Cited by 36 publications

(43 citation statements)

References 18 publications

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“…The classification used in the current study was based on the criteria used in earlier studies which described written information about the condition for which screening was being conducted in prenatal screening leaflets. 3,7 Examples of positive information were: 'some people with Down's syndrome enjoy good health' and 'most people with Down's syndrome live to be over 50 years of age, some live to be over 70'. Examples of negative information were: 'severe mental handicap (IQo50) will result in most cases' and 'Down's syndrome is the single most common cause of mental disorder'.…”

Section: Discussionmentioning

confidence: 99%

“…3,4 Bryant et al 3 described written information women were given about Down's syndrome. About a fifth of the 80 leaflets analysed gave no information about the condition at all.…”

Section: Introductionmentioning

confidence: 99%

“…2,3,4,7 The extent to which written information for people offered screening is likely to facilitate informed choice in other countries is not known. The aim of this study is to describe the presentation of choice and information about Down's syndrome in written information given to pregnant women about prenatal screening in Europe and Asia.…”

Section: Introductionmentioning

confidence: 99%

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Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia

Hall

Chitty²,

Dormandy

et al. 2007

Eur J Hum Genet

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To date, studies assessing whether the information given to people about screening tests facilitates informed choices have focussed mainly on the UK, US and Australia. The extent to which written information given in other countries facilitates informed choices is not known. The aim of this study is to describe the presentation of choice and information about Down's syndrome in written information about prenatal screening given to pregnant women in five European and two Asian countries. Leaflets were obtained from clinicians in UK, Netherlands, Spain, Italy, Czech Republic, China and India. Two analyses were conducted. First, all relevant text relating to the choice about undergoing screening was extracted and described. Second, each separate piece of information or statement about the condition being screened for was extracted and then coded as either positive, negative or neutral. Only Down's syndrome was included in the analysis since there was relatively little information about other conditions. There was a strong emphasis on choice and the need for discussion about prenatal screening tests in the leaflets from the UK and Netherlands. The leaflet from the UK gave most information about Down's syndrome and the smallest proportion of negative information. By contrast, the Chinese leaflet did not mention choice and gave the most negative information about Down's syndrome. Leaflets from the other countries were more variable. This variation may reflect cultural differences in attitudes to informed choice or a failure to facilitate informed choice in practice. More detailed studies are needed to explore this further.

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Section: Discussionmentioning

confidence: 99%

“…3,4 Bryant et al 3 described written information women were given about Down's syndrome. About a fifth of the 80 leaflets analysed gave no information about the condition at all.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia

Hall

Chitty²,

Dormandy

et al. 2007

Eur J Hum Genet

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“…121 Secondly, few would disagree with Alderson 122 that those undergoing screening need`realistic, unprejudiced knowledge about people with Down's syndrome.' * First, the offer of a test for a condition may be perceived as a recommendation that something i.e.…”

Section: Impact Of the Abnormality: Where Does The Information Come Fmentioning

confidence: 99%

Prenatal diagnosis of fetal abnormality: the decision to terminate the pregnancy and the psychological consequences

Statham

2002

Fet. Matern. Med. Rev.

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In the absence of any prenatal screening, some two percent of babies will be born with a structural anomaly; a further 1 in 700–800 will be born with Down's syndrome, with similar numbers having other chromosomal and serious genetic disorders. The prevalence of abnormalities in early pregnancy is higher because abnormal fetuses are more likely to miscarry than normal ones. A small number of women enter pregnancy at increased risk of conceiving a baby with an abnormality. They may have a maternal condition such as diabetes, need medication for conditions such as epilepsy, or have a family history of a genetic disorder (www3.ncbi.nlm.nih.gov/Omim/searchomim.html). Most abnormalities, however, occur in healthy, low-risk women.

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“…Material contained in prenatal screening information leaflets has also been subject to criticism 5 . One study evaluating 80 leaflets provided in the UK to pregnant women prior to serum screening found that one‐third contained no descriptive information about Down’s syndrome 6 . In the remaining two‐thirds, information about the condition was overwhelmingly medico‐clinical in nature.…”

Section: Introductionmentioning

confidence: 99%

‘Balance’ is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource

Ahmed¹,

Bryant²,

Hewison³

2007

Health Expectations

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Objectives The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnSWeR in terms of providing balanced information. Setting West Yorkshire.Participants A total of 69 people were drawn from three groups: health professionals, people with personal experience of tested-for conditions (DownÕs syndrome, cystic fibrosis and spina bifida) and people representing potential users of the resource.Method Data were collected via focus groups and electronic questionnaires.Results Participants believed that information about the experience of living with the tested-for conditions and terminating a pregnancy for the conditions were important to support informed antenatal testing and termination decisions. However, there were differences in opinion about whether the information about the tested-for conditions was balanced or not. Some people felt that the inclusion of photographs of people with the tested-for conditions introduced biases (both positive and negative). Many participants were also of the opinion that AnSWeR presented insufficient information on termination of an affected pregnancy to support informed choice.Conclusion This study highlighted the difficulty of designing Ôbal-ancedÕ information about tested-for conditions and a lack of methodology for doing so. It is suggested that AnSWeR currently provides a counterbalance to other websites that focus on the medical aspects of disability. Its aim to provide ÔbalancedÕ information would be aided by increasing the number and range of case studies available on the website.

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Descriptive information about Down syndrome: a content analysis of serum screening leaflets

Cited by 36 publications

References 18 publications

Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia

Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia

Prenatal diagnosis of fetal abnormality: the decision to terminate the pregnancy and the psychological consequences

‘Balance’ is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource

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