In England, Wales and Scotland, all pregnant women are routinely offered antenatal screening for Down syndrome (DS) at the booking appointment, according to the UK National Screening Committee ([UKNSC], 2007). Screening information should increase knowledge in order for women to make informed decisions (de Jong et al, 2014). However, some women undergo screening even though they have relatively little knowledge of the test or the condition (Dormandy et al, 2006; Skirton and Barr, 2010).
Advances in genetic/genomic technology are revolutionising antenatal screening and the UK NSC, (2016) has recommended introducing non-invasive prenatal testing (NIPT) into the National Health Service (NHS) which is more accurate than current forms of screening (Norton et al, 2015). The way healthcare professionals present information is likely to influence screening uptake. Midwives should counsel women about NIPT in the same way as invasive testing because the tests carry similar diagnostic implications. If midwives can effectively communicate current screening information and support women's informed decision making, then it is anticipated that it will be easier to incorporate NIPT into practice.
This paper proposes a framework to investigate what factors influence women's understanding of DS screening information. The two key factors in this are midwife communication and women's cognitive status.
Midwife communication
A number of researchers have attempted to describe components of language which could influence a listener's understanding. Adams et al (2009) suggest healthcare professionals should use plain language, limit medical jargon, use diagrams to aid verbal explanation and check clients have understood information.
Roter et al (2009) found that individuals with low literacy learnt more in prenatal genetic counselling sessions which were more interactive, had fewer dense chunks of speech and shorter speeches from genetic counsellors. In contrast, individuals with high literacy benefited from more complex language, dense chunks of speech and less interactivity. The differences required for optimum learning in those with low and high literacy skills highlight the importance of tailoring information, and this has been echoed by a number of researchers (Paradice, 2002; Ormond, 2013).
In order to tailor information, it is important that women's current knowledge is established early in the appointment, otherwise time may be wasted either describing DS, when women already have full knowledge of the condition, or assuming knowledge and describing screening when women have no knowledge of DS (Bryant et al, 2010). The Nursing and Midwifery Council (2018) states that midwives should ‘check people's understanding’. However, midwives have said that they often do not ask open questions and encourage time-consuming interactive conversation due to workload (Porter et al, 2007). Ongoing assessments of understanding at appointments are essential to facilitate informed decision making (Dormandy et al, 2005).
Individuals with low literacy skills may be disadvantaged when presented with written or oral dialogue and are less likely to understand medical information regarding risks and benefits (Tait et al, 2004; Erby et al, 2008; Roter et al, 2009). Information presented in diagram or picture form to support oral explanations may aid understanding, especially in those with low literacy (Centre for Health Care Strategies, 2013).
Oral information may be difficult to understand due to its subjective nature. Words can be either abstract or concrete. Concrete words allow the formation of images in our minds (Sadoski et al, 1997). For instance, it is easy to conjure an image of the concrete words ‘chair’ or ‘needle’. It is much harder to produce an image in our mind of abstract words, such as ‘care’ or ‘risk’.
Genetic risk information is often abstract, which can complicate communication and influence whether information is understood and remembered by the recipient (Kim, 2009; Beukeboom et al, 2013). Roter et al (2009) found that individuals with low literacy skills had superior learning when information was more concrete. Arguably, due to the subjective nature of abstract words, it would be preferable to communicate using only concrete words to ensure understanding. However, this seems to not be the case, as Roter et al (2009) demonstrates that individuals with higher literacy learnt better in prenatal genetic counselling sessions when more abstract information was presented.
The role that abstract-concrete language plays in women's understanding has not previously been explored in relation to DS screening in the UK. Further research is necessary to help clarify whether concrete language aids understanding for all individuals, or whether tailoring language, as abstract or concrete, enhances understanding.
Cognitive status
The term cognitive status encompasses a whole set of mental processes such as attention, memory, intelligence, problem solving and reasoning. Cognitive status plays a role in how people process the world around them. Therefore, it is proposed that it may influence how women understand DS screening information.
Cognitive development occurs in stages and the ability to reason abstractly emerges at the age of 12 years (Piaget, 1972). Abstract reasoning forms the basis of logic and allows individuals to apply knowledge to novel situations and correctly solve problems by imagining alternative solutions (Stern and Prohaska, 1996; Campbell and Ritchie, 2002; Tennant, 2005). However, the speed of development can vary from one individual to another, and it has been suggested that some adults may never truly gain abstract reasoning (Piaget, 1972; Keating, 1979; Cole, 1990; Lehman and Nisbett, 1990).
Some individuals are more likely to ask questions and be more active in discussions than others. These individuals are said to possess high Need for Cognition (NfC). NfC is the extent that people engage in thinking to increase their knowledge (Cohen et al, 1955). Levels of NfC may be an indicator of understanding. For instance, women with high NfC have an ‘information seeker’ disposition, meaning they are more likely to ask questions requiring the midwife to provide more information. Thus, NfC could influence both women's understanding and midwife communication.
Cognitive status, in terms of abstract-concrete reasoning (Piaget, 1972) and NfC (Cacioppo and Petty, 1982), has not previously been investigated as an influence on how women understand DS screening information or the midwife's communicative style.
Satisfaction
Dissatisfaction with healthcare often results from a lack of communication (Roter et al, 2007; Deane-Gray, 2008). Good communication should result in women gaining an improved understanding of screening information and a greater satisfaction with the services received (Pope et al, 1998; Paradice, 2002).
In summary, there is a lack of literature on the influence of abstract language, women's cognitive status and resources on women's understanding of DS screening information. There is little evidence outlining how midwives check women's knowledge and understanding, and whether they tailor information to suit each woman. All these factors have driven the creation of a new framework and tool to identify factors that may influence women's understanding of screening information.
Methods
Aims
The aim was to investigate what factors influence women's understanding of DS screening information. The study was split into two distinct phases:
Literature review
An extensive literature review was undertaken across multiple databases. This identified different factors that could influence women's understanding of DS screening information. These components can be broken down into aspects of midwife communication and women's cognitive status. These are discussed further in subsequent sections and are incorporated into the new framework.
Developing the framework
Phase 1 involved developing a new framework, measuring understanding of screening information and communication (MUSIC), as a tool to assess women's understanding of DS screening information, their cognitive status and midwives' communication. The following aspects were considered during the development of the tool:
MUSIC and midwife communication
Koenke (1987) outlined the following factors which could influence understanding of written information: syntactic complexity, concept density, abstractness, organisation, coherence, sequence of ideas, page format, length of line print, length of paragraph, punctuation, illustrations, colour and reader interest.
Key components to ensure women's understanding include checking knowledge, understanding and explaining medical terms, inviting questions, and using diagrams (Ley, 1986). This research uses similar components to assess midwife's oral communication.
Language complexity
Koenke's ‘syntactic complexity’ is mirrored in the language complexity component of MUSIC (Koenke, 1987). As highlighted by Ley (1986), the importance of explaining medical terms is vital since medical terminology may be unknown. Words such as ‘inheritance’ and ‘susceptibility’ are unfamiliar to the general population (Erby et al, 2008) and the term ‘genetics' itself has different meanings to different people (Burke et al, 2007).
Dynamics
Depending on the dynamics of conversation, information may be easier or harder for women to understand and process. If midwives provide screening information in a dense chunk or ‘lesson type’ format, there may be inadequate time for the woman to process all the information provided (Roter et al, 2009). More interactive speech allows equal contribution from the woman and midwife (Hunter, 2006; Deery and Fisher, 2010).
Knowledge and understanding check
Women's pre-existing knowledge and perception of genetics may affect their comprehension and recall of provided information (Michie and Marteau, 1996; Thompson et al, 2015). Questioning clients' knowledge can help guide the remainder of the appointment, providing the healthcare professional with insight into areas that are not fully understood and require further explanation (Weil, 2000). Questioning women's understanding throughout the appointment can clarify any misunderstandings and ensure the woman is making an informed decision. However, there are currently no guidelines to outline exactly how midwives should check women's understanding (Ahmed et al, 2013).
Resources
The resources component of MUSIC encompasses Koenke's (1987) idea of including illustrations and colour in written materials, and Ley's (1986) use of diagrams to aid understanding. The extent that resources are used to aid midwives' verbal explanations is unknown.
Abstract language
The abstract language component endorses Koenke's (1987) idea of ‘abstractness'. The research may illustrate whether concrete language aids understanding for all individuals, or whether tailoring language, as abstract or concrete, enhances understanding.
Originally, additional components of ‘non-directive’, ‘length of appointment’ and ‘technical terminology’ were considered for MUSIC. These were subsequently excluded for a number of reasons. Non-directive communication does not influence understanding, but rather decision-making—which was not assessed in this research. Length of DS discussion was measured instead of length of appointment, since only the section of the appointment that covered DS screening information was analysed and not the whole appointment. Technical terminology makes language more complex, therefore assessment of technical terminology has been included in the ‘language complexity’ component of MUSIC.
MUSIC and women's cognitive status
The exploration of cognitive status could highlight the role it plays, not only in women's understanding, but also in influencing the communication between the midwife and woman. NfC can influence women's understanding and midwife communication, since the ‘information seeker’ disposition of those with high NfC means they might ask more questions and the midwife will provide more information. The best predictor of success on Piagetian tasks, and thus demonstration of abstract reasoning skills, is NfC (Stuart-Hamilton and McDonald, 2001; Parry and Stuart-Hamilton, 2010). Therefore, it is expected that women with higher abstract reasoning skills should have higher NfC.
Satisfaction
Ensuring a positive pregnancy experience goes beyond ensuring the physical health of the woman and her infant (Haines et al, 2013). It is important that women's satisfaction with antenatal care is established to gain their views regarding how and whether communication can be improved.
Findings
A new framework, MUSIC, was developed to provide an insight into influences on women's understanding of DS screening information provided in antenatal appointments (Figure 1).
Developing and selecting measures to assess midwife communication
This research has involved developing new measures and combining existing measures to create a tool to assess the framework (Table 1).
| Language complexity |
Number: word count and sentences |
| Dynamics |
Interactivity: number of speaking turns in a session per minute |
| Check knowledge/understanding |
Knowledge check: Do midwives check women's current knowledge levels when they commence the appointment? |
| Resources | Are additional resources used to aid explanations, eg pictograms? |
| Abstract language |
The linguistic category model (LCM) (Semin and Fiedler, 1988): the higher the score, the more abstract the text. Four word categories are distinguished to produce an ‘abstract score’, computed as follows: |
Scoring matrix for these measures is set out in Appendix 1 (John, 2017)
Developing and selecting measures for assessment
Two questionnaires were designed to assess:
The measures used to assess these concepts are discussed. Appendix 4 (John, 2017) contains a detailed scoring system for the questionnaires.
Cognitive status
For the purposes of this research, cognitive ability will be assessed on the abstract-concrete continuum. Abstract tests correlate highly with, and draw on, more components of intelligence than concrete tests, which correlate less with, and draw on, fewer components of intelligence (Marshalek et al, 1983). The tests that have been selected vary by reasoning level (concrete versus abstract), domain (verbal versus non-verbal), and difficulty, allowing a comprehensive assessment of women's concrete-abstract reasoning.
Cognitive ability: verbal abstract reasoning measure
Gorham's proverbs (1956) have been used widely within psychology to classify individuals who do not possess abstract thought. Proverbs measure verbal reasoning and can assess where individuals lie on the abstract-concrete continuum (Campbell and Ritchie, 2002). Participants will be provided with multiple-choice response proverbs. This ensures better standardisation of the measure as each answer is scored as abstract (2), somewhat abstract (1) or concrete (0). Open questions could elicit many responses which would take longer to code and cause difficulty in defining the answer on the abstract-concrete continuum. This study does not rely on proverbs alone as an assessment of abstract ability. Raven's standard progressive matrices (RSPM) is also used to measure non-verbal reasoning ability.
Cognitive ability: non-verbal abstract reasoning measure)
The original RSPM consists of 60 items with five sets containing 12 items each. Each set represents a different conceptual theme and increases in difficulty, therefore, each set requires a different thought process (Jones, 2010). Each item within RSPM requires the identification of relationships between patterns and reasoning to make comparisons between them (Coaley, 2009). Due to time constraints and attrition concerns, a shorter nine-item version will be employed, which has the same predictive power, reliability and validity as the 60 item matrices (Bilker et al, 2012). The nine items (A11, B12, C4, C12, D7, D12, E1, E5, E7) sample each conceptual theme of the full matrices.
Alternate tests of cognitive ability were considered. The Mill Hill vocabulary scale and the national adult reading test were disregarded because they do not measure abstract reasoning ability but verbal intelligence instead, and neither of these scales would capture women's ability to solve novel problems, such as those presented by the midwife (Raven, 1962; Nelson, 1982). The Alice Heim and the Wechsler adult intelligence scale (WAIS-IV) were also considered (Heim, 1975; Wechsler et al, 2008). However, time was a concern due to the length of these tests. Furthermore, WAIS-IV assesses intelligence as a whole, however the current research aims to capture only abstract-concrete reasoning, therefore, the majority of the scale would be disregarded. While WAIS-IV includes proverbs as an assessment of verbal reasoning abilities and uses pictures to assess non-verbal reasoning abilities, the current study selected shorter tests.
Need for cognition
The NfC scale was developed by Cacioppo et al (1984; 1996), who tested the scale on different populations and reported a reliability coefficient of a=0.90. The test includes 18 statements where individuals score on a Likert scale the extent that they enjoy thinking about particular tasks and exerting cognitive effort.
DS understanding
A six item multiple-choice understanding questionnaire was developed to assess understanding of DS information covered in the booking appointment. Questions were created from similar studies which included questionnaires to assess understanding of screening information and from information in the Antenatal Screening Wales leaflet (2013).
Satisfaction measures
Care must be taken with the interpretation of satisfaction questionnaires since participants often do not want to criticise their healthcare provider and thus generally provide high satisfaction ratings (Fitzpatrick and Hopkins, 1993; Dowswell et al, 2010; Andersson et al, 2013). However, when service users are asked more specific questions about aspects of their healthcare, they tend to be more critical (Sofaer and Firminger, 2005). Thus, specific questions regarding certain aspects of information provided by the midwife are included. The satisfaction questionnaire will be sent to women a week after their appointment and thus prior to receiving any screening results, which could influence their satisfaction with provided information.
Demographics
A demographics section will capture women's age, ethnicity, English language ability and parity. Features of the appointment which could affect communication will be captured, such as the presence of another during the appointment, or the appointment setting, home or clinic.
Piloting
The questionnaire was piloted with a convenience sample of colleagues and lay individuals (n=45). Based on the results of the pilot, it was anticipated that the questionnaire to assess women's cognitive status and DS understanding would take approximately 20 minutes to complete, and the satisfaction questionnaire would take approximately 5 minutes. Time was an important consideration when designing the questionnaires to try and create as short a questionnaire as possible without loss of functionality.
Discussion
Previous research has established that not all women are fully informed regarding DS screening (Dormandy et al, 2006; Beulen et al, 2016). Due to the introduction of NIPT, there will be additional pre-screening information for women to understand within booking appointments (Department of Health, 2016). It is imperative that DS screening information is currently understood before a test with greater implications is fully introduced.
This paper has introduced phase 1 of a study which involved developing a novel framework and tool to assess factors which could influence women's understanding of DS screening information. While some factors have previously been considered, such as language complexity and dynamics (Roter et al, 2009), MUSIC is the first of its kind to encompass a combination of factors which could influence women's understanding. All or some components of the framework may influence women's understanding of DS screening information.
In phase 2, the research team will apply the MUSIC tool to assess women's understanding of DS screening information, their cognitive status and midwives' communicative style. The study that will follow will encompass a mixed-methods design with two distinct components, transcript analysis of recorded consultations and quantitative questionnaires.
This research is the first to simultaneously evaluate multiple aspects of midwife communication and women's cognitive status as an influence on their understanding of DS screening information. By revealing the dayto-day consultations between midwives and women, insight into the way DS screening is communicated and consequently understood can be obtained. The framework may clarify the importance of tailoring information to women's cognitive status by gaining an insight into how it influences women's understanding and midwife communication.
Conclusion
During phase 1, a framework, MUSIC, has been developed. This incorporates a combination of factors which could influence women's understanding of screening information. Once the tool has been tested, the results will advance current knowledge in this field, both in terms of aspects of midwife communication that are effective in facilitating informed choice as well as outlining the role that cognitive status plays in women's understanding of screening information. It is anticipated that findings will be assembled to inform a best practice model for midwifery. The scope of the framework means that any recommendations proposed may have relevance to information provision beyond midwife communication of DS screening.