This paper discusses the findings of the previous three papers in this series (John et al, 2019a; 2019b; 2020). From the results, the authors make recommendations regarding the information that needs to be communicated in booking appointments and the approach midwives should take in order to accomplish an ‘ideal’ Down syndrome screening discussion (Figure 1). At the centre of an ‘ideal’ consultation is a woman-centred approach, which is recommended for midwifery care (Department of Health [DoH], 2007; Nursing and Midwifery Council [NMC], 2015; National Institute of Health and Care Excellence [NICE], 2019).
Figure 1. The components of an ‘ideal’ Down syndrome discussion
Three overarching conceptual themes have been identified which could constitute an ‘ideal’ Down syndrome discussion (Figure 1). Within each theme, different recommendations for midwife communication are outlined (bold text in Table 1). The proposed midwifery guidelines encompass the five aspects of midwife communication included in measuring understanding of screening information and communication (MUSIC) framework (John et al, 2019a), and incorporates guidelines that already exist from Antenatal Screening Wales (2015), NMC (2015) and NICE (2019), and new recommendations (Table 1), based on the results of this research, which are discussed further in subsequent sections.
Table 1. Guidelines midwives should follow to achieve an ‘ideal’ Down syndrome discussion (new recommendations are outlined in bold) Table 1. Guidelines midwives should follow to achieve an ‘ideal’ Down syndrome discussion (new recommendations are outlined in bold)
| 1. Accurate facts | |
|---|---|
| 1.1 | Fully describe the condition:
|
| 1.2 | Discuss the causes of Down syndrome:
|
| 1.3 | Describe both screening and testing:
|
| 1.4 | Convey the potential incidental detection of other chromosomal conditions and implications of these conditions |
| 1.5 | Demonstrate an awareness of trusted websites to which women can be directed |
| 2. Empathic communication | |
| 2.1 | Check whether women received, read and understood the Down syndrome screening information leaflet |
| 2.2 | Good communication is essential and the following principles should be applied to ensure communicated information:
|
| 2.3 | Tailor information to women's cognitive status and ensure:
|
| 2.4 | Consistently check knowledge and understanding throughout and following the Down syndrome discussion in a way that does not cause embarrassment and puts onus on self |
| 2.5 | Listen to women's differing personal beliefs and values regarding parenting a child with Down syndrome and respect them at all times |
| 2.6 | Acknowledge differing language barriers and ensure care is sensitive to women's culture |
| 2.7 | Demonstrate confidence in communicating information |
| 3. Accurate facts | |
| 3.1 | Identify any previous pregnancies, the care received and whether women opted for screening previously.Recognising that screening decisions for the current pregnancy may be different |
| 3.2 | Promote inclusion of the partner in the decision-making process and value their contribution |
| 3.3 | Listen to women to help identify any anxiety and attempt to alleviate this appropriately |
| 3.4 | Utilise resources, where necessary, to aid oral explanation, eg pictures, graphs |
| 3.5 | Adopt a psycho-educational (Kessler) approach and identify an appropriate balance between the role of educator and counsellor |
| 3.6 | Encourage women to consider potential decisions that need to be made at each point along the screening and testing pathway, and their consequences |
| 3.7 | Take the appropriate time:
|
| 3.8 | Recognise and respect women's decisions, even when this is contrary to the views of the midwife |
| 3.9 | Advocate and facilitate informed decision-making (including informed refusal) |
Accurate facts
There are clear guidelines that outline the information that should be provided in antenatal screening appointments (NICE, 2019):
- Screening is optional
- The types of tests offered
- The limitations of tests offered
- Risk information
The current research revealed that not all this information was covered consistently in appointments and midwives did not always follow these guidelines (John et al, 2019b). Statements 1.2, 1.4 and 1.5 should also be incorporated in midwifery guidelines to fully inform women regarding Down syndrome and screening.
Causes of Down syndrome
Research conducted by McGregor (2005) found that within Wales, nurses, midwives and health visitors (n=605) had low levels of basic genetic knowledge. A similar picture was found in this research, where Down syndrome was only discussed as a chromosomal condition in 27 consultations and no explanation of the meaning of the term ‘chromosome’ was provided (John et al, 2019b).
In order for women to understand that the chance of having a baby with Down syndrome is different for each pregnancy, Down syndrome should be discussed as a chromosomal condition and the meaning of the term ‘chromosome’ should be provided. Furthermore, the associated risk of advanced maternal age should be discussed to ensure women have a realistic idea of their own risk. This was only discussed in 18 consultations within this research.
Incidental findings
Through screening, it is sometimes possible to detect the presence of other chromosomal conditions (Spencer et al, 2000). Only three midwives, in nine consultations, mentioned the potential detection of other chromosomal conditions (John et al, 2019b). This has ethical implications where women are consenting to screening without being aware that they are also consenting to potentially finding chromosomal conditions other than Down syndrome.
Non-invasive prenatal testing (NIPT) is being introduced into the NHS and will be offered to women following a positive screening result prior to invasive testing. NIPT can detect genetic conditions other than Down syndrome. Consequently, it is vital that women are counselled regarding all detectable conditions and their implications, and are asked whether they would want to receive the results of any additional findings (Dondorp et al, 2015).
Websites
Many websites are not regulated, accurate or verified by a healthcare professional (Bianco et al, 2013; Mercer et al, 2014). Midwives should be educated regarding which websites they can safely refer women to since many women now seek information from the internet (John et al, 2019b).
Empathic communication
For empathic presentation, midwives need to be mindful of relevant social and emotional issues, and have self awareness in order to communicate information effectively. The new aspects of empathic communication recommended by this research are discussed further.
Communication
The results of this research found that high levels of complex language were used, with high Flesch-Kincaid Grade Level scores and long sentence lengths (Flesch and Kincaid, 1965; John et al, 2019b). In relation to the ‘language complexity’ component of MUSIC, communication of information should be simple and explain any medical/technical terms used. This will hopefully prevent women from feeling that the midwife could have used ‘simpler language’ following the appointment.
Corresponding to the ‘dynamics’ component of MUSIC, communication should be interactive which will enable the midwife to address other aspects of the guidelines. Women will be provided more time and opportunity to ask questions (3.7 in Table 1). The midwife will also be able to adopt a more woman-centred and psycho-educational approach (3.5 in Table 1), since interactive conversation allows the midwife to not only educate the woman but also listen to her needs in order to adopt more of a counselling role and be able to identify if the woman is feeling anxious (3.3 in Table 1). An interactive approach also allows the midwife time to attempt to assess the woman's needs and information could be tailored accordingly (2.3 in Table 1).
Tailoring to cognitive status
Women's cognitive ability had an influence on their understanding of Down syndrome screening information (John et al, 2020). Consequently, it is important that midwives are sensitive to individuals differing cognitive abilities and information requirements since women with concrete cognitive ability were leaving appointments ill-informed.
Individuals have different needs for information and a woman's need for cognition (NfC) influenced their ability to understand Down syndrome screening information (John et al, 2020). It is important to identify women with high NfC, who are more likely to ask questions, to ensure that the midwife provides them with enough information. It is equally important to identify those with low NfC since they may require information provided in a different format in order to facilitate understanding.
Consistently check women's knowledge and understanding
The NMC (2018) states that healthcare professionals should ‘check people's understanding from time to time to keep misunderstanding or mistakes to a minimum’. However, there are currently no guidelines outlining the best way midwives could check women's knowledge/understanding (Ahmed et al, 2013). From these findings, a framework could be developed to outline how midwives should check women's knowledge and understanding in a sensitive way.
Women's knowledge of Down syndrome should be checked to allow the midwife to tailor (2.3 in Table 1) the consultation by assessing whether each woman requires any further information. Following the presentation of each piece of information (1.1–1.4 in Table 1), women's understanding should be checked so the midwife can be sure each woman is making an informed decision (3.9 in Table 1). Understanding can be assessed through carefully phrased comments to encourage interaction (Watson and Gallois, 2002), using open rather than closed, leading or guiding questions (Martin et al, 2015). Questions should be asked sensitively to ensure that women do not feel embarrassed by any lack of knowledge or misunderstanding (Weil, 2000). To achieve this, midwives could attempt to shift the responsibility onto themselves for any misunderstandings women may have. Another way to check understanding is via a ‘teach back’ method, whereby individuals have to repeat information the healthcare professional has provided (Werner-Lin et al, 2016).
It would be beneficial to establish how genetic counsellors within the UK's Association of Genetic Nurses and Counsellors assess understanding to make comparisons with how midwives check women's understanding. This research offers a starting point upon which a framework could be formed to educate midwives regarding exactly how women's knowledge/understanding should be checked with the suggestions made here being further refined.
Confidence
The level of midwives' education was identified as a barrier that could affect midwives' ability to communicate Down syndrome information effectively (John et al, 2019b). In order to feel confident delivering information to women, midwives need to be fully educated on all aspects of information they need to provide (1.1–1.4 in Table 1).
Supporting decision-making
New ways that midwives could support women to make informed decisions regarding Down syndrome within antenatal screening are discussed here.
Previous pregnancy
In the Health Board, where this research was conducted, combined screening had only recently been introduced. Consequently, all women would have been receiving new screening information. However, the findings revealed that women, who had attended a booking appointment with a previous pregnancy, had shorter Down syndrome discussions with their midwife even though this would have been the first time they received screening information. Due to the new screening method, women's parity, and whether they had attended a booking appointment previously, had no influence on their understanding of Down syndrome screening information
However, in other locations, where the screening method has remained the same for some time it could be that women's previous experience of booking appointments influences their knowledge in subsequent pregnancies. Midwives should not assume that women who have opted for screening previously will opt for screening again and this conversation provides midwives with an opportunity to identify women's beliefs about parenting a child with Down syndrome (2.5 in Table 1).
Resources
Resources were only used by midwives in 3% of appointments to aid explanation (John et al, 2019b). However, research outlines the benefits of using resources to educate clients within the healthcare setting (Bakker, 1999; Houts et al, 2006; Garcia-Retamero and Galesic, 2010). Resources that could be utilised include leaflets or cards, displaying written descriptions, pictograms, charts and pictures of individuals with Down syndrome, the nuchal translucency measurement, and invasive testing.
Psycho-educational
Biesecker and Peters (2001) defined genetic counselling as a ‘dynamic psycho-educational process’ encompassing Kessler's idea that it should be viewed on a continuum where one end represents a ‘teaching model’ and the other represents a ‘counselling model’. While being educated, clients should feel supported with the communicator responding to their emotional and personal needs (Kessler, 1997).
Time
Women had a better understanding of Down syndrome screening information when they had their booking appointments within the community (John et al, 2019b). Within the community, both appointments and Down syndrome discussions were longer which could account for improved understanding within this setting. Thus, it is important that midwives in clinic dedicate the same amount of time to booking appointments as those in the community.
NICE guidelines (2019) outline that professionals ‘should provide pregnant women with an opportunity to discuss issues and ask questions’. However, within the current research, discussions were not very interactive, meaning women had limited time to ask questions (John et al, 2019b).
Time was identified as a barrier which could affect successful communication and consequently the women's ability to make an informed decision (John et al, 2019b). Midwives need to take time into consideration and potentially find a way to facilitate decision-making post-booking appointment when the woman has had time to reflect on her decision and discussed it with a partner.
Facilitate informed decision-making and refusal
In the majority of appointments, midwives described Down syndrome screening and then obtained consent. However, six midwives, in 19 appointments, asked women if they wanted screening, before any description had been offered (John et al, 2019b). Some women questioned the midwife, making it clear that they required a description of screening before they could make a decision:
Midwife: ‘What about the Down syndrome screening?’
Woman 076: ‘Right, what about it?’
Midwife: ‘Have you thought about the Down syndrome screening?’
Woman 075: ‘What is the Down syndrome screening?’
A further issue with asking women if they want screening before any description being provided is that some women accepted or declined screening based on very limited information. This is concerning when informed consent is key to ethical practice (NHS, 2019).
Seven women initially thought that screening was invasive. Without a description being provided, women may be refusing screening on this basis. If midwives describe screening first, before asking women to make a decision, then they are facilitating informed consent. Only one midwife, although asking initially if women wanted screening, facilitated informed refusal by continuing to explain screening to women and then checking at the end that their decision had not changed:
Midwife ‘You're not going to…’
Woman 088 interrupts: ‘No.’
Midwife: ‘…have the test? And that's absolutely fine so long as you understand, so if I just explain it quickly so you understand what the test is and what you're not going to have.’
Woman 088: ‘Yeah.’
Discussion
Guidelines outline the importance of informed choice (Antenatal Screening Wales, 2015; NMC, 2015; NICE, 2019). However, the current research revealed that not all women left appointments fully informed regarding Down syndrome, although they had made a decision to accept or reject screening. This could be attributed to a number of reasons: for example, midwives did not always fully discuss Down syndrome screening or that the woman was limited by her cognitive capabilities to understand the information. By checking women's knowledge/understanding levels consistently (2.4 in Table 1), midwives should be able to ascertain whether women are making informed decisions.
Table 1 contains guidelines of how Down syndrome discussions could be structured to facilitate informed decision-making while adopting a woman-centred approach. These guidelines can be brought together to create a new conceptual framework to inform midwives regarding the best ways to communicate Down syndrome screening information in an ‘ideal consultation’ (Figure 2). This framework can be applied to midwifery practice during the communication of Down syndrome screening. Midwives should be aware of the four cardinal ethical principles of healthcare of autonomy, non-maleficence, beneficence and justice (Beauchamp and Childress, 2013) while following this framework and communicating information.
Figure 2. Conceptual framework of guidelines that midwives can follow for an ‘ideal’ Down syndrome discussion
The recommendations of MUSIC and the conceptual framework (Figure 2) have the potential to improve women's understanding of Down syndrome screening information by ensuring that midwives adequately communicate information and women's cognitive status requirements are tailored to. The number of screening programmes offered in antenatal and postnatal care is increasing. MUSIC could be applied to many different forms of screening where decision-making is required. Furthermore, antenatal screening for Down syndrome and other chromosomal conditions is common practice within many countries (Nicolaides et al, 2002; Leporrier et al, 2003). Thus MUSIC could be applied to healthcare services outside of NHS Wales.
Implementing NIPT
With the introduction of NIPT, the amount of pre-screening information that will need to be communicated will increase and the complexity of autonomous decision-making becomes more challenging (Beulen et al, 2016). Counselling for NIPT needs to be balanced, provide accurate information and adequately support informed decision-making (van Schendel et al, 2017). It is the healthcare professionals' responsibility to ensure that women understand information and are making informed decisions in order to prevent NIPT becoming a routine test (Alexander et al, 2015). The introduction of NIPT will be difficult for midwives ‘if existing programmes are problematic to start with’ (Munthe, 2015). It is imperative that midwives’ knowledge is up to date and they are communicating screening effectively before they are required to learn more complex screening methods with greater implications. With the rapid increase in genetic discovery and technologies, it is difficult for healthcare professionals to keep up to date (DoH, 2003; Burke et al, 2007; Skirton et al, 2012). Therefore, ongoing training is required and midwives need to receive support at practice, policy and leadership levels.
Conclusion
This paper concludes a series of papers that have sought to identify what aspects influence women's understanding of Down syndrome screening information. The results have been assembled into a new series of midwifery guidelines to inform a best practice conceptual framework for communication of screening information which can be applied in practice. Furthermore, new recommendations for how midwives should assess women's understanding to ensure informed decision-making have been outlined. This study goes some way in highlighting areas of information provision regarding screening that need to be addressed in light of the implementation of NIPT. While Down syndrome screening is changing within the NHS, what remains the same is the moral dilemmas women face and the midwife's role in facilitating informed choice.
Key points
- A best practice model for midwifery communication of screening information is presented
- The conceptual framework encompasses accurate facts, empathic communication and support for decision-making in a woman-centred approach
- The aim of the framework is to facilitate informed choice
- These recommendations may have wider relevance beyond midwife communication of Down syndrome screening
CPD reflective questions
- Have I presented accurate information ensuring I have fully described the condition, procedure and potential outcomes?
- Am I communicating empathically ensuring each woman has had enough information and understands the information presented?
- Am I supporting each woman and their family, ensuring they have had enough time to consider their options and are in a position to be able to make an informed decision?