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Sociocultural influences & expectations
| Framing ultrasound as a clinical assessment or a social event | |
| Parents: Ultrasound is generally viewed as an integral part of pregnancy, to look forward to and not to be missed. It offers couples the chance to meet and bond with their baby and to share the news of their pregnancy with others. Fathers view attendance at the scan as part of their role, and a demonstration of their commitment to their partner and child. Attendance is also felt to be necessary for fathers to support their partner if complications are detected. For some couples, it offers a way to actively facilitate partner involvement in the pregnancy.Health workers: Providers sometimes found it difficult to reconcile their role as a clinician working in an environment assessing risk, with the expectations of parents who viewed the scan as an exciting event where they would see and ultimately share an image of their child for the first time. | Parents:’No, the thought hadn’t crossed my mind…. I think that it’s part of the pregnancy in some way to have an ultrasound.’ (Ekelin 2004, Sweden)’It gives me a sense of security. With the first look at the fetus, even my husband would directly feel a sense of parenthood. He will be encouraged and you can feel that he has changed into a responsible person. Men should be involved in women’s matters. They should not stay removed from them.’ (Bashour 2005, Syria)Health workers:’The majority of them don’t really come with any great belief that it’s about anything other than tell me what gender it is and that I’m going to get lots of nice pictures of my baby.’ (Hardicre 2020, England) | Parents, 18 studies: Ahman 2010, Sweden (A)**; Ahman 2012, Sweden (B+)**; Baillie 2000, England (B+)**; Barr 2013, England (B-)*; Bashour 2005, Syria (C); Carolan 2009, Canada (C+)**/***; Denny-Koelsch 2015, USA (B-); Dheensa 2013, England (B-); Dheensa 2015, England (B-); Draper 2002, England (C)**; Ekelin 2004, Sweden (B+)**; Harris 2008, England (C); Hawthorne 2009, Australia (B-)*; Larsson 2010, Sweden (B+)**/***; Lou 2017, Denmark (B+)*; Mitchell 2004, Canada (B-)**; Molander 2010, Sweden (B+)*/**; Walsh 2014, USA (A-)**Health workers, 6 Studies: Barr 2013 UK (B-)*; Edvarsson 2014, Australia (A-); Edvardsson, 2018, Norway (B); Hadicre UK, 2020 (B-); Schwennesen 2012, Denmark (C)*; Williams 2002, UK (C)* | Minor concerns about the methodological limitations of 5/23 studies contributing to the review finding, mainly around data collection and analysis phases | Few or minor concerns about adequacy of data as the finding is supported by rich data from a number of studies | Few or minor concerns around coherence as the data is consistent and supported by information from women and health workers | Few or minor concerns about relevance as the finding relates directly to the review question in HIC contexts | High | Grading only applicable to HICs |
| Impact of ‘routine’ ultrasound screening on women’s autonomy and decision making | |
| Parents: The role of ultrasound as a routine and expected part of pregnancy may impact on decision making and autonomy. Furthermore, some women and couples view ultrasound as an obligatory aspect of antenatal care, rather than a choice. In some contexts, women perceive the offer of an ultrasound as coming from healthcare professionals who have authoritative knowledge and that it must therefore be beneficial for them to adhere to any recommendations or appointments made by them.Health workers: Some providers felt that although ultrasound was presented as a choice, the routine nature of scans along with societal pressure to have them (for example, to avoid being seen as a ’bad mother’) undermined women’s autonomy. Additionally, in certain contexts, women’s deference to doctors as authoritative sources of knowledge restricted their ability to make autonomous decisions following an ambiguous or anomalous scan, and some healthcare professionals explicitly direct women to accept ultrasound in the belief that this is the best thing for them. | Parents:’There’s no reason to say no…we just read through it and we said, ‘no harm’…see, I think we’re not experts in this baby thing anyway, so it’s like whatever they offer, we would just take it, as long as it’s not harming me or the baby, that’s fine.’ (Williams 2005, England) ’ the only thing is that looking back now I can’t remember been given the opportunity to decide what I want; it was just recommended to me just being told that it is the normalprocedure to have the test, to have the ultrasound. I can’t remember been given the choice as such.’ (Tsianakas 2002, Australia)Health workers:‘Now it’s almost like if you do not accept the offer (of an ultrasound examination), then you are a bad mother almost. (…) Are you irresponsible then? I don’t know.’ (Ahman 2019, Norway)‘Do women get a choice though? Usually it’s you get the slip to go and get your ultrasound.’(Edvardsson 2015b, Australia) | Parents, 14 studies: Ahman 2010, Sweden (A)**; Baillie 2000, England (B+)**; Dheensa 2015, England (B-); Firth 2011, Tanzania (C); Gammeltoft 2007c, Vietnam (B-)**; Georges 1996, Greece (C); Harris 2008, England (C+); Jones 2020, Kenya (B)*/**; Larsson 2010, Sweden (B+)**/***; Liamputtpng 2002, Australia (B+); Ockleford 2003, England (B-)**; Oyen 2016 Norway (B); Tsianakas 2002, Australia (B+); Williams 2005, England (B-)*Health workers, 8 Studies: Edvardsson 2014, Australia (A-); Edvardsson 2015(b), Australia (C+); Edvardsson, 2018, Norway (B); Gameltoft & Nguyen 2007(c)**, Vietnam (B-); Hadicre UK, 2020 (B-); Schwennesen 2012, Denmark (C)*; Williams 2002, UK (C)* | Minor concerns about the methodological limitations of 4/20 studies contributing to the review finding, mainly around data collection and analysis phases | Minor concerns around data adequacy as the finding is supported by relatively rich data from a variety of settings and contexts | Minor concerns around coherence as the finding is framed around women’s autonomy and incorporates both societal and professional influences with the latter more prevalent in LMICs | Few or minor concerns about relevance as the finding relates directly to the review question | High | |
| The personal and social consequences of fetal gender identity | |
| Parents: Finding out the sex of their child is important to parents across contexts. This can be to enable planning based on gender expectations, and knowledge of fetal sex appears to aid bonding for some. However, in some contexts, the desire to know fetal sex is driven by cultural and family preference for a male baby. Carrying a fetus identified as being of an undesirable sex can be a heavy burden for some, with severe consequences. Women in some cultural contexts report that ultrasound can result in female feticide. Some service users report that health workers may not disclose fetal sex if they are aware of the potential for culturally and socially influenced preferences and consequences.Health workers: In most settings and contexts the disclosure of gender identity following a scan was acknowledged to have significant consequences, both positive and negative. In some contexts, providers were aware of a preference for male babies and the potential for selective abortion. In some settings there is a policy of non-disclosure of gender identity to address this concern. | Parents:’My baby was a boy and I was so happy. You know, having a boy is so important in Afghanistan. I wanted to have a boy and so did my mother.’ (Ranji 2012, Sweden)’… via USG people can know about sex of the baby and can get the girl child aborted.’ (Bhagat 2012, India)Health workers:’There is this stigma between girls and boys, in some communities they want to know if it’s a boy or a girl so that they may be able to either prevent the pregnancy from going on.’ (Ahman 2016, Tanzania)’What often happens in ultrasound is you tell the woman the sex of the child she did not want. I think that this can be disturbing psychologically for the mother and, in the end, it can be harmful to the child.’ (Holmlund 2017, Rwanda) | Parents, 13 studies: Bashour 2005, Syria (C); Bhagat 2012, India (C); Dheensa 2013, England (B-); Ekelin 2016, Sweden (B+)**; Firth 2011, Tanzania; Gammeltoft 2007a, Vietnam (C); Gomes 2007a, Brazil (C); Jones 2020, Nairobi (B)*/** Liamputtpng 2002, Australia (B+); Mabuuke 2011, Uganda (C-); Ranji 2012a, Sweden (B-)**; Rice 1999, Australia (C-)**; Walsh 2014, USA (A-)**Health workers, 8 Studies: Ahman, 2015, Sweden (A-); Ahman 2016, Tanzania (B+); Ahman 2018, Tanzania (B); Ahman 2019, Norway (B); Edvardsson 2015, Vietnam (B+); Edvardsson 2016(b), Rwanda (B); Holmlund 2017, Rwanda (B+); Mbuuke 2011, Uganda (C) | Minor concerns about the ethodological limitations of 6/19 studies contributing to the review finding, mainly around data collection and analysis phases | Few or minor concerns around adequacy of data as the contributing studies include rich data from a number of studies | Minor concerns around coherence as the finding highlights the importance of scans in identifying the gender of the fetus (for parents) with the caveat that gender preference may have tragic implications in some contexts | Few or very minor concerns about relevance as the finding relates directly to the review question | High | |
| Expectations about the nature and impact of antenatal ultrasound influences uptake | |
| Parents: Fears around potential for harming the unborn baby, stories of misdiagnosis and false alarms, and religious and social beliefs with respect to the morals and timing of pregnancy termination for fetal abnormality may influence whether ultrasound is acceptable or believed to be necessary for women and their partner. Some women may misunderstand the nature of the diagnosis that can be made through ultrasound.Health workers: In some contexts, there were societal misunderstandings about how ultrasound scanning could harm the baby. Some felt the power of the technology was overestimated in society in general. | Parents:’I went quite late in my pregnancy; I wanted to make sure that I was beyond two months. You see, I’ve heard ultrasound is not good in the first months of the pregnancy.’ (Bashour 2005, Syria)’This is why I panic, because where do you draw the line, because people get things wrong with them at different severities don’t they? And I think if you’ve got a baby, you love it—whatever it’s got wrong with it, you still love it and protect it, don’t you? I know people who would say, ‘no, that baby’s got something wrong with it, I’m not having it’…but that’s why the test would be hard for me, because I wouldn’t be straightaway, ‘oh, if there’s something wrong, I’m not having it.’ (Williams 2005, England)Health workers:I think… most members of the public think an ultrasound is a more powerful tool than it is.’ (Edvarsson 2014, Australia) | Parents, 11 studies: Bashour 2005, Syria (C); Firth 2011, Tanzania (C); Gammeltoft 2007b Vietnam (C); Gitsels 2015, Holland (C); Kristjansdottir 2014, Iceland (B+)*; Lewando-hundt 2001, Isreal (C)**; Rice 1999, Australia (C-)**; Teman 2011, USA (B+); Tsianakas 2002, Australia (B+); Williams 2005, England (B-)*Health workers, 6 studies: Ahman, 2018 Tanzania (B); Edvardsson, 2014, Australia (A-); Edvardsson 2015b; Australia (C+); Holmlund Rwanada, 2017 (B+); Holmlund Vietnam; 2020 (A-); Vesel 2019, Kenya (B) | Moderate concerns about the methodological limitations of 7/17 studies supporting the review finding, largely related to data collection procedures and analysis of data | Minor concerns around adequacy of data as the finding is supported by relatively rich data from women and health workers in variety of different settings and contexts | Minor concerns around coherence as the finding incorporates a range of beliefs and understandings about ultrasound | Few or minor concerns about relevance as the finding relates directly to the review question | Moderate | Finding downgraded because of concerns about the methodological quality of some of the contributing studies |
| Friends and family influence values and beliefs, and provide information and support | |
| Parents: For many women, knowledge, expectations, values and beliefs related to ultrasound, and its implications, are influenced by family and friends and their experiences, both positive and negative. Women also often look to family and friends as sources of support. In some settings, whether women attend ultrasound scans is influenced by the views and beliefs of their partner. | . . . .I know that other doctors show everything to the woman on the scan, but I kept going to that doctor anyway because he was competent. He is famous!’ (Bashour 2005, Syria)“I’ve got a friend whose daughter is 15 with Down syndrome and it’s not the worst." (Ledward 2017, England)’I needed help to sort out all my feelings and questions, my husband was a great support to me, but I would have liked to talk to my midwife.’ (Kristjansdottir 2014, Iceland) | Parents, 13 studies: Ahman 2010, Sweden (A)**; Ahman 2012, Sweden B+)**; Bashour 2005, Sryria (C); Doering 2015, NZ (B-); Ekelin 2004, Sweden (B+)**; Firth 2011, Tanzania (C); Gottfreosdottir 2009a, Iceland (B-)*; Hammond 2020, England/Netherlands 2020, (B)**; Hawthorne 2009, Australia (B-)*; Larsson 2009, Sweden (B+)**; Ledward 2017, England (C+)**/***; Oscarsson 2015, Sweden (B+)**; Walsh 2014, USA (A-)** | Minor concerns about the methodological limitations of 3/12 studies contributing to the review finding, mainly around data collection and analysis phases | Moderate concerns about adequacy of data due to relative inadequacy in how rich the data supporting this finding is | No or very minor concerns realting to coherence | Moderate concerns about relevance, as the majority of studies supporting this finding are from high income settings | Moderate | Minor concerns around adequacy of data as the finding is supported by relatively rich data from women and health workers in variety of different settings and contexts |
| Coping with limited resources | |
| Health workers: In a variety of LMIC contexts providers recognized that limited resources affected their ability to provide an equitable service. In some contexts, women were only offered a scan in the event of a complication whilst in others a lack of equipment and trained staff restricted access. Health workers reported that, even where equipment and trained professionals were available, a lack of personal resources limited uptake by women. In some settings, midwives expressed the desire for training due to lack of availability of trained staff. | People from remote areas know about it [ultrasound] and would want to use it, but they cannot easily come here because they live far away from the hospital.’ (Holmlund 2017, Rwanda)’I wish in the future we will get training for us physicians, even nurses, for the basics, at least the basics to know a few things about how to do, how to examine the woman by using ultrasound, or how to determine different things which are important. It would be easier even if you are at night and you have one ultrasound machine here we can use.’ (Ahman 2016, Tanzania) | Health workers, 6 Studies: Ahman, 2018, Tanzania (B); Ahman 2016, Tanzania (B+); Holmlund 2017, Rwanda (B+); Scott, 2020, India (A-); Edvardsson 2016; Rwanda (B-); Vesel 2019, Kenya (B) | Few or very minor concerns about the methodological limitations of the studies contributing to the review finding | Moderate concerns about adequacy of data as the finding is supported by relatively thin data from a limited number of studies. | Minor concerns about coherence as the finding reflects a variety of resource constraints as well as attempts to overcome resource limitations (by training other health workers to conduct scans) | Moderate concerns about relevance as the finding is supported by few data from MICs | Moderate | Grading only applicable to LMICs. Finding downgraded because of concerns around adequacy of data as well as the lack of data from MICs |
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Findings
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The power of visual technology
| An essential technology in antenatal care | |
| Parents: For many women, ultrasound is trusted as safe and is a valued technology that providesreassurance and a sense of security that their baby is developing normally.Health workers: Across a broad spectrum of settings and contexts healthcare providers viewed ultrasound as an essential component of pregnancy care, especially in complicated pregnancies. It is seen as a trusted intervention that optimises pregnancy outcomes and provides pleasure and reassurance to women and their partners. | Parents:’It’s important for me to know if there is life inside; if everything looks fine.’ (Oyen 2016, Norway)’I feel comfortable. The scan makes me feel psychologically relieved. There is no point in going to the doctor if the scan is not available…It is my duty to go every month and follow up the situation of the fetus.’ (Bashour 2005, Syria)Health workers:‘The stream [of requests] for early ultrasound is absolutely huge. People want to look as soon as they are pregnant. That is not how it was before.’ (Ahman 2019, Norway)‘Initially, I can say it came as an extra tool without really knowing why I have to do this. But, through getting used to the tools and doing it regularly, I came to get used to it and think right now I can say it is something we feel like we cannot do without.’ (Vesel 2019, Kenya)’I think it’s been a big game changer in obstetric care and modern obstetrics is ingrained with ultrasound.’ (Edvardsson 2014, Australia) | Parents, 18 studies: Bashour 2005, Syria (C); Dheensa 2015, England (B-); Dheensa 2013, England (B-); Doering 2015, NZ (B-); Ekelin 2016, Sweden (B+)**; Firth 2011, Tanzania (C); Georges 1996, Greece (C); Gomes 2007b, Brazil (C); Gottfreosdottir 2009b, Iceland (B-)*; Harris 2008, Australia (C+); Hawthorne 2009, Australia (B-)*; Jones 2020, Kenya (B)*/**; Liamputtpng 2002, Australia (B+); Lou 2017, Denmark (B+)*; Oyen 2016, Norway (B); Rice 1999, Australia (C-)**; Tsianakas 2002, Australia (B+); Walsh 2014, USA (A-)**Health workers, 14 Studies: Ahman, 2015, Sweden (A-); Ahman 2016, Tanzania (B+); Ahman 2018, Tanzania (B); Ahman 2019, Norway (B); Edvardsson, 2014, Australia (A-); Edvardsson 2015, Vietnam (B+); Edvardsson 2015(b) Australia (C+); Edvardsson 2016, Australia (B-); Edvardsson 2016(b), Rwanda (B); Edvardsson 2018, Norway (B); Gameltoft & Nguyen 2007(a), Vietnam (C); Holmlund 2017, Rwanda (B+); Holmlund 2020, Vietnam (A-); Vesel 2019, Kenya (B) | Few or minor concerns about the methodological limitations of 6/29 studies contributing to the review finding, mainly around data collection and analysis phases | Few or minor concerns around adequacy of data as the finding is supported by rich data from a number of studies | Few or minor concerns around coherence as the finding is relatively consistent across all settings | Few or minor concerns about relevance as the finding relates directly to the review question | High | |
| Overuse and the potential repercussions | | |
| Parents: In some contexts, the sense of contact provided by ultrasound, as well as the need toensure ongoing normality, drives a need for frequent scanning. Ultrasound can also be prioritised over other forms of clinical assessment. For some women and their partners, there may be an unjustified expectation of the ability of ultrasound to detect and resolve complications.Health workers: In many settings, providers noted increased demand for antenatal scans and, in some contexts, the potential for overuse. Some providers in these contexts highlighted the unregulated nature of the scanning business, along with associated safety concerns. Health workers also noted the potential for diminishing clinical skills even in public care settings due to the overuse of ultrasound. In some clinical settings providers described examples of potentially serious undiagnosed conditions as women replaced formal antenatal appointments with scan appointments. | Parents:’That’s why I had scans constantly. To see how it was developing.’ (Gammeltoft 2007b, Vietnam)’The first time I saw the baby, I was crazy with happiness. It was a contact with the child. Every time I went to the doctor, I wanted to see the child again.’ (Georges 1996, Greece)Health workers:’You don’t know what to do and so you put on the probe and sometimes a few too many ultrasounds are done without any indication.’ (Ahman 2015, Sweden)“Private clinics just conduct ultrasound scans for patients, but no examinations or tests. Therefore, they don’t know in what state their patients are…. In our department, some patients had surgery and died because they were in serious states of multi-organ dysfunction.’
(Holmlund 2020, Vietnam) | Parents, 9 studies: Bashour 2005, Syria (C); Denny 2014, England(C+)**/***; Doering 2015, NZ (B-); Gammeltoft 2007a, Vietnam (C); Gammeltoft 2007b, Vietnam (C); Georges 1996, Greece (C); Ockleford 2003, England (B-)**; Oscarsson 2015, Sweden (B+)**; Tsianakas 2002, Australia (B+)Health workers, 10 Studies: Ahman 2016, Tanzania (B+); Ahman, 2018 Tanzania (B); Edvardsson, 2014, Australia; Edvardsson 2015, Vietnam (B+); Edvardsson 2015b; Australia; Edvardssson, 2016(b), Rwanda (C+); Edvardsson, 2019, Norway (B); Holmlund Rwanada, 2017 (B+); Holmlund Vietnam; 2020 (A-); Vesel 2019, Kenya (B) | Minor concerns about the methodological limitations of 5/18 studies contributing to the review finding, mainly around data collection and analysis phases | Minor concerns around adequacy of data as the finding is supported by relatively rich data from a range of settings and contexts | Minor concerns around coherence as the issues are highlighted by both health workers and service users. | Minor concerns about relevance as the finding relates to overuse (and the potential for harm) rather than direct experience | High | |
| Ultrasound legitimises the pregnancy and frames the fetus as a person | |
| Parents: For many women, visualisation of their baby through ultrasound offers objectiveconfirmation of pregnancy and the existence of their child. The ultrasound scan provides a significant moment for couples to connect with their child, and to begin to visualise their future together, as a family. This opportunity may be particularly pertinent for fathers. Some parents begin to envisage their child’s potential characteristics and personality through the scan image.Health workers: A number of providers felt that the visual representation of the fetus on a screen conferred identity as a person and facilitated parental bonding. | Parents:’And it was really fun to seethis little baby on the screen and see it moving around, and that was really good.So, despite my initial anxieties it was good, it was a good experience, and I’d actu-ally say to others it was a really nice thing to have done.’ (Harris 2008, Australia)’And it became so very alive and I felt very close to the baby. Yes it felt like a fine moment, it was a very philosophic.. emotional moment…It felt very good.’ (Ekelin 2004, Sweden)’So it feels fun that we could get to know her personality already there.’ (Ekelin 2004, 2004 Sweden)Health workers:’All we needed was for you to talk to her! Now everything I need her to do she’s doing. I think you got lucky with this one.’ (Walsh 2020, USA)‘You dealt with the unknown, when very few [pregnant women] had an ultrasound. Today I notice it more, that I myself have some trouble seeing the fetus as a fetus, I realize I want to think of it as a child’. (Ahman 2019, Norway) | Parents, 20 papers: Denny 2014, England (C+)**/***; Dheensa 2013,England (B-); Draper 2002, England (C)**; Dykes 2001, Sweden (B)**; Ekelin 2004, Sweden (B+)**; Ekelin 2016, Sweden (B+)**; Firth 2011, Tanzania (C); Gagnon 2020, Canada (A)*/**; Georges 1996, Greece (C); Gomes 2007b, Brazil (C); Harris 2008, England (C+) Hawthorne 2009, Australia (B-)*; Lou 2017, Denmark (B+)*; Oyen 2016, Norway (B); Ranji 2012, Sweden (B-)**; Rice 1999, Australia (C-)**; Stephenson 2016, Australia (B)*/**; Tsianakas 2002, Australia (B+); Walsh 2020, USA (B)**; Walsh 2014, USA (A-)**Health workers, 8 Studies: Ahman, 2015, Sweden (A-); Ahman 2016, Tanzania (B+); Ahman 2018, Tanzania (B); Ahman 2019, Norway (B); Edvardsson 2015, Vietnam (B+); Edvardsson 2015(c) Australia (B+); Edvardsson 2016, Australia (B-); Edvardsson 2018, Norway (B) | Minor concerns about the methodological limitations of 5/25 studies contributing to the review finding, mainly around data collection and analysis phases | Few or minor concerns around adequacy of data as the finding is supported by rich data from a large number of studies | Few or minor concerns around coherence as the finding is relatively consistent across all settings | Minor concerns about relevance as the finding relates directly to the review question though largely limited to HIC settings only | High | |
| Ultrasound findings can generate complex ethical and moral dilemmas, including the potential for conflict between the wellbeing of mother and fetus |
| Parents: Once mothers have seen the image of their baby on the screen, the potential consequences of the ultrasound, and decisions that may have to be made, become more complex.Health workers: Providers reported conflict between the welfare of the mother and that of the fetus. Many health workers commented that mothers would go to any lengths, often to their own detriment, to potentially improve the wellbeing of, or treat their baby. Health workers frequently discussed the challenges of dealing with complex ethical and moral issues in the course of their work. These issues were often framed around the difficulties of prioritizing one life over another or the capacity to set aside personal beliefs when women and/or their partners held a different opinion. For some providers the scan image confirmed identity both as a person and a patient. | Parents:’Obviously I know they can’t do these tests without showing you the scan, but it’s easy to sit at home and say, ‘right, if they say this, we will obviously terminate the pregnancy’, but when you see that baby on the screen, you don’t care what it’s got wrong with it, you just see that it’s there and you know it’s inside you…it must be a horrible decision once you’ve actually seen that this is the baby inside you, to suddenly say, ‘no, I don’t want to carry on with it’. I think that must be quite a heartbreaking decision to make.’ (Williams 2005, England)Health workers:’We are accustomed to putting the mother’s health first and foremost but that is sort of a balancing act’ (Ahman 2019, Norway)’When she [the pregnant woman] understands that you are going to do something to help her baby, she does not refuse, she bears with it.’ (Holmlund 2017, Rwanda) | Parents, 5 studies: Baillie 2000, England (B+)**; Dheensa 2013, England (B-); Draper 2002, England; Ekelin 2016, Sweden (B+)**; Williams 2005, England (B-)*Health workers, 13 Studies: Ahman, 2015, Sweden (A-); Ahman 2016, Tanzania (B+); Edvardsson, 2014, Australia (A-); Edvardsson 2015, Vietnam (B+); Edvardsson 2015(b) Australia (C+); Edvardsson 2015(c) (B+); Edvardsson 2016, Australia (B-); Edvardsson 2018, Norway (B); Gameltoft & Nguyen 2007(c), Vietnam (B-)**; Holmlund 2017, Rwanda (B+); Holmlund 2020, Vietnam (A-); Stephenson 2017, Australia (B); Williams 2002, UK (C)* | Few or minor concerns about the methodological limitations of 2/17 studies contributing to the review finding. | Minor concerns around adequacy of data as the finding is supported by rich narrative from a number of studies | Few or minor concerns as the finding title incorporates the range of moral and ethical dilemmas identifed by health workers and service users | Moderate concerns about relevance as the finding relates directly to the review question, but there are few studies from the perspective of service users and they are all from two HICs | Moderate | |
| For health workers, uncertainties in interpreting the ultrasound image can lead to fear of under/over diagnosis |
| Health workers: Providers were sometimes left with feelings of uncertainty if the image was perceived to be ambiguous and feelings of anxiety if they thought they may have missed something. In some HIC settings these anxieties were enhanced by the potential for censure (or even litigation) in the event of an abnormality going undetected. | ‘It’s important to have knowledge about what you can see [with ultrasound], and to use the tool (…) so that you do the right things [during an ultrasound examination]. It can have consequences both ways, in terms of not detecting what is there and seeing things that aren’t really there’. (Ahman 2019, Norway)‘That would-be down side of the area of medicine we’re in is that the tension or the pressure is on, not to miss anything. That has increased dramatically.’ (Edvardsson 2014, Australia) | Parents, 9 Studies: Ahman, 2015, Sweden (A-); Ahman 2018, Norway (B); Edvardsson 2014, Australia (A-); Edvardsson 2015, Australia (B+); Hadicre, 2020, UK (B-); Reiso 2020, Norway (B); Scott 2020, India (A-); Stephenson, 2017, Australia (B); Williams 2002, UK (C) | Few or minor concerns about the methodological limitations of 1/9 studies contributing to the review finding. | Minor concerns around adequacy of data as the finding is supported by relatively rich data from health workers | Moderate concerns around coherence as the finding encompasses the competencies, responsibilities and uncetainties of professional practice | Moderate concerns about relevance as the finding relates directly to the review question, though largely confined to HICs only (+1 study from India) | Low | Finding downgraded because of limited data from LMICs and a lack of coherence across studies |
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Joy and devastation: consequences of ultrasound findings
| Adverse clinical findings are shocking and unexpected | |
| Parents: Couples often first realise the clinical nature and potential for ultrasound when they attend for their scan appointment. Expectations include confirmation of fetal wellbeing, to find out fetal sex, and to receive a scan image. When an abnormality is detected, for some women and their partners this is completely unexpected, and couples experience a range of resulting emotions including shock, fear and distress. Some experience a sense of naivety or betrayal at not having had prior knowledge that adverse findings could be possible.Health workers: Some providers felt that parents lacked understanding about the purpose of ultrasound scans and the potential implications of screening. They felt that parents should be given written and verbal information in a balanced format (in their own language where possible) as well as an opportunity to have any questions addressed prior to each scan. However, some health workers also struggled with getting the balance right in preparing couples for potential results, due to the desire to protect the positive experience of pregnancy and reduce unnecessary worry, as well as lack of time in appointments prior to the scan. | Parents:’We were full of expectation and thought it would be very exciting to see our baby.’ (Larsson 2010, Sweden)’It was a shock like this, because what we expect is that it will be everything perfect.’ (Gomes 2007a, Brazil)’I realized that they actually weren’t really looking so that they could give me a nice day, it was actually because they were measuring all the bits and pieces.’ (Barr 2013, England)Health workers:’A lot of them think that they’re going there, yay we get to see the baby and we get to find out the sex. They don’t actually understand the significance of the scan and what we’re looking for. And then if something does turn up, then they’re completely devastated because nobody told me you were looking for that, I thought we were going to find out the sex of the baby. ‘ (Edvardsson 2015b, Australia) | Parents, 20 studies: Ahman 2010, Sweden (A)**; Ahman 2012, Sweden (B+)**; Asplin 2012, Sweden (B)**; Baillie 2012, England (B+)**; Barr 2013, England (B-)*; Carolan 2009, Canada (C+)**/***; Cristofalo 2006, USA (B)**; Denny 2014, England (C+)**/***; Denney-Koelsch 2015, USA (B-); Draper 2002, England (C)**; Gomes 2007a, Brazil (C-); Hawthorne 2009, Australia (B-)*; Kristjansdottir 2014, Iceland (B+)*; Larsson 2009, Sweden (B+)**; Larsson 2010, Sweden (B+)**/***; Mitchell 2004, Canada (B-)**; Oscarsson 2015, Sweden (B+)**; Sommeseth 2010, Norway (B)**; Stephenson 2016, Australia (B)*/**; van der Zim 2006, USA (B)Health workers: 8 Studies: Ahman, 2015, Sweden (A-); Ahman 2018, Norway (B); Barr 2013, UK (B-)*; Edvardsson 2016, Australia (B-); Edvardsson 2015(b) Australia (B); Edvardsson 2016(b) Rwanda (B); Hadicre, 2020, UK (B-); Williams 2002, UK (C)* | Few or minor concerns about the methodological limitations of 4/27 studies contributing to the review finding. | Few or minor concerns about adequacy of data as the finding is supported by rich narrative from a large number of studies | Few or minor concerns about coherence as the finding title incorporates both the unexpected nature of adverse findings, and the issue of lack of preparedness for them | Moderate concerns about relevance as the finding relates directly to the review question, but there are very little data from LMICs | Moderate | Finding downgraded because of limited data from LMICs |
| A diagnosis of potential abnormality has both short- and long-term psychological consequences (even if the fetus is later found to be healthy) | |
| Parents: The emotions experienced as a result of abnormal findings may be particularly difficult to assimilate when the finding is associated with any form of uncertainty. This can lead to speculation around what might happen in future, and a shift away from feeling that pregnancy is a positive state. For some, their pregnancy/fetus moves into a state of being permanently risky, even if the anomaly seen on the scan is later found to be benign. Some women experience feelings of guilt, grief and loss of, or detachment from their pregnancy or baby. Concern for fetal wellbeing can extend even into infancy following a false positive diagnosis. For some, this resulted in the decision not to have more children. For many couples, there was ambiguity around whether being advised about the potential diagnosis was worth the resulting harms.Health workers: Providers are aware of the potential impact of uncertain findings on parents, both in the short- and long-term. Some health workers struggled with difficult conversations, and the potential impact their words could have on parents who may be in a state of shock or trying to come to terms with life-changing information. | Parents:’I can’t ignore that there was actually something they saw there. Maybe it’s an irrational fear but… I don’t know how much I… you know with bonding, accepting the pregnancy.’ (Ahman 2010)’There is another uncertainty in its place. That things may go wrong with a subsequent pregnancy and whether a new syndrome will arise or not during the next pregnancy.’ (Hammond 2020, England/Netherlands)I just want to put it all out of my mind [the scans and worry] … I suppose I was a bit annoyed about it, that they got us all worried for nothing.’ (Carolan 2009)‘I don’t want any more children. And maybe it’s because of the stress I’ve had because of the uncertainties. I just never want to experience it again. ‘ (Hammond 2020, England/Netherlands)Health workers:’Those people are angry and bitter later when the child is normal and the pregnancy’s been overshadowed by a lot of distress because of comments at the time of the ultrasound but it … a lot of stuff is grey and it’s hard to get it right but there are definitely patients for whom we make the pregnancy more stressful.’ (Edvardsson 2014) | Parents, 16 studies: Ahman 2010, Sweden (A)**; Ahman 2012, Sweden (B+)**; Asplin 2012, Sweden (B)**; Baillie 2012, England (B+)**; Carolan 2009, Canada (C+)**; Cristofalo 2006, USA (B)**; Denny 2014, England (C+)**/***; Gottfreosdottir 2009b, Iceland (A-)*; Hammond 2020, England/Netherlands 2020, (B)**; Hawthorne 2009, Australia (B-)*; Kristjansdottir 2014, Iceland (B+)*; Larsson 2009, Sweden (B+)**; Larsson 2010, Sweden (B+)**/***; Mitchell 2004, Canada (B-)**; Oscarsson 2015, Sweden (B+)**; van der Zim 2006, USA (B)Health workers, 7 Studies: Ahman, 2015, Sweden (A-); Ahman 2018, Tanzania (B); Ahman 2019, Norway (B); Edvardsson 2018, Norway(B); Gameltoft & Nguyen 2007(c) Vietnam (B-)**; Holmlund 2017, Rwanda (B+); Schwenessen 2012, Denmark (C)* | Few or very minor concerns about the methodological limitations of 3/23 studies contributing to the review finding. | Minor concerns about adequacy of data as the finding is supported by rich narrative from a variety of settings and contexts | Few or minor concerns about coherence as the finding title incorporates the impact of uncertainty of potentially abnormal diagnosis in the context of a range of actual outcomes | Moderate concerns about relevance, especially for service users, as there is relatively little data from LMICs | Moderate | Finding downgraded because of concerns about relevance in LMICs |
| For pregnant women and their families, ultrasound in pregnancy enables planning and preparation when abnormalities are detected | |
| Parents: Through its potential to detect complications, ultrasound provides the chance to plan and prepare emotionally and financially, to make decisions and therefore have choice, and to enable treatment of complications. The first trimester ultrasound was seen as valuable in enabling choice around termination before the pregnancy was visible to others. | If you are in such situation as this you want to know. ’ (Firth 2011, Tanzania)It would make it possible to be prepared before the baby was born. . . if there is something to be done immediately or if any extra medication is needed. . . just when the baby is born.’ (Ekelin 2016, Sweden)’I haven’t told my son about the pregnancy yet, because I don’t want to go to the scan and find out there is something wrong and have to terminate and then have to tell him.…It’s going to be hard enough me dealing with terminating this baby, let alone a 7 year old coping too.’ (Hawthorne 2009, Australia) | Parents, 10 studies: Ekelin 2004, Sweden (B+)**; Ekelin 2016, Sweden (B+)**; Firth 2011, Tanzania; Gottfreosdottir 2009b (B-)*; Hawthorne 2009 (B-)*; Larsson 2010, Sweden (B+)**/***; Molander 2010, Sweden (B+)*/**; Oscarsson 2015, Sweden (B+)**; Tsianakas 2002, Australia (B+); Williams 2005 (B-)* | No or very minor concerns about the methodological limitations of the studies supporting this finding | Moderate concerns about adequacy due to lack of depth to the data, and relatively few studies supporting the finding | Few or minor concerns | Moderate concerns about relevance as this finding includes data from only one LMIC and the 5/10 of the HIC studies are from one country | Moderate | Finding downgraded due to lack of studies from LMICs and relatively few HIC countries represented, as well as lack of richness in the included data |
| A positive, exciting, significant moment in pregnancy if the scan is ’normal’ | | |
| Parents: For many, the scan is perceived as a positive and exciting experience, bringing joy and a sense of relief. It offers confirmation of a new life, instigating a sense of responsibility as well as a bonding opportunity; it may also bring couples closer together and can be seen as an opportunity to promote marital security. | It’s a unique moment, there’s nothing equal ’ (Gomes 2007b, Brazil)’The scan. It stands out a mile"; "a defining moment so far’ (Draper 2002, England)’I was relieved. Not that I had been going round thinking about it before rather that it had been in the back of my head. By the way I reacted I could feel that I was relieved anyway.’ (Ekelin 2004, Sweden) | Parents, 12 studies: Bashour 2005, Syria (C); Draper 2002, England (C)**; Dykes 2001, Sweden (B)**; Ekelin 2004, Sweden (B+)**; Ekelin 2016, Sweden (B+)**; Firth 2011, Tanzania (C); Gammeltoft 2007b, Vietnam (C); Gomes 2007b, Brazil (C); Jones 2020 Nairobi (B)*/**; Oyen 2016, Norway (B); Stephenson 2016, Australia (B)*/**; Williams 2005, England (B-)* | Moderate concerns about the methodological limitations of 4/11 of the studies contributing to the review finding, largely related to data collection procedures and analysis of data | Minor concerns about adequacy as the finding is supported by rich data and 12 studies | No or very minor concerns about coherence | Minor concerns about relevance as although the supporting studies are from a wide variety of setting, they include data from women only | Moderate | Finding downgraded because of concerns about methodological limitations |
|
The significance of relationship in the ultrasound encounter
| Impact of staff attitudes, behaviours and communication skills on women and families | |
| Parents: Women and their partners want health workers to welcome them, to acknowledge the importance and unique nature of the situation for them as parents, and to provide relevant information. However, some women and couples experience a lack of any meaningful interaction and information during their ultrasound scan, leaving them excluded from their experience, and uncertain about the results. In some contexts, women will not ask health care providers proactively for the information they need. Women were highly sensitive to non-verbal cues from providers during the scan. Long silences and being excluded from conversations, or not being able to view the ultrasound screen was anxiety-provoking for many.In contrast, being welcomed to and engaged in the scanning episode, and being provided with coherent and timely information during and after the scan, had a positive impact on the experience, even if it then resulted in an adverse diagnosis.Health workers: Providers often referred to communication as a significant but challenging aspect of their role. They highlighted the need for more time during a consultation to establish a rapport with parents with differing expectations, and to offer empathic and compassionate care when needed. This included professional, non-directive conversation, and facilitating parental engagement with the fetus whilst simultaneously looking for anomalies. | Parents:’Maybe that the sonographing midwife would ask a little about … what expectations we had and… if we had seen ultrasound imaging before … how we experienced that and … what we hoped for and … pause the imaging and … well that she would ask if we were worried about something… a little more time.’ (Molander 2010, Sweden)’I was like expecting like a, "Hey how are you doing? Are you pretty excited about it?’ Like asking me, ’How you feeling about this?" I’d probably feel more welcome.’ (Walsh 2014, USA)‘I can’t recall her looking at me, maybe just glancing. Just looking at my tummy basically. I can’t recall her ever looking at me and saying, ‘Would you like to see your baby now?’ or ‘Would you like me to explain some things to you?’ (van der Zim 2006, USA)’With a little more empathy’ clinicians can ‘better guide people in dealing with uncertainty.’ (Hammond 2020, England/Netherlands)Health workers:’Even after all these years, there’s still times when you get a reaction or a question that you weren’t expecting and you stumble over your words and it’s almost like being back in the first couple of times you did it, again it’s totally thrown you.’ (Hardicre 2020, England) | Parents, 17studies: Asplin 2012, Sweden (B)**; Baillie 2000, England (B+)**; Bashour 2005, Syria (C); Cristofalo 2006, USA (B)**; Denney- Koelsch 2015, USA (B-); Ekelin 2004, Sweden (B+)**; Gottfreosdottir 2009a, Iceland (B-)*; Hammond 2020, England/Netherlands 2020, (B)**; Jones 2020, Kenya (B)*/**; Larsson 2009, Sweden (B+)**; Larsson 2010, Sweden (B+)**/***; Molander 2010, Sweden (B+)*/**; Ranji 2012, Sweden (B-)**; Sandelowski 1994, USA; van der Zim 2006, USA (B); Walsh 2014, USA (A-)**; Walsh 2020, USA (B)**Health workers, 7 Studies: Ahman 2015, Sweden (A-); Barr 2013, UK (B-)*; Hadicre 2020, UK (B-); Jansson 2010, Sweden (B+)**; Reiso 2020, Norway (B); Stephenson 2017, Australia (B); Williams 2002, UK (C)* | Few or very minor concerns about the methodological limitations of 2/23 studies contributing to the review finding. | Few or minor concerns around adequacy of data as the finding is supported by rich data from a large number of studies | Minor concerns around coherence as both women and health workers identified relevant provider attributes | Moderate concerns about relevance as the finding is largely supported by data from HICs and more than half of the contributing studies come from 2 countries (8 from Sweden and 6 from the USA) | Moderate | Finding downgraded because of concerns about relevance, in particular the lack of data from LMICs and the prevalance of data from 2 countries |
| A challenging role, with a need for training and emotional support | |
| Health workers: Providers expressed satisfaction in their ability to guide prospective parents through an ultrasound assessment and offer support during difficult conversations. However, they also discussed the difficulty of maintaining a professional and supportive persona whilst also dealing with their own emotions. A few also talked about their sense of responsibility, the relative isolation of their role and the importance of peer support in their personal and professional development. Particular challenges were a lack of time to form relationships and communicate results, a lack of adequate training in the communication of abnormal results and the need for a more holistic approach to their engagement with service-users. | I know that I am providing good care to women at a terrible time in their lives. And whether the outcome is good or bad, they know that what could have been done, reasonably was done, that it was done by people who cared about them and knew what they were talking about. And that’s very rewarding.’ (Edvardsson 2014, Australia)’If you didn’t deliver the happy-clappy scan to them … they would complain. Irrespective if you’ve had … you know, you’d told the previous patients some really bad news, you weren’t allowed to be just a little bit down or you had to put on the show for the next patient.’ (Hadicre 2020, England) | Health workers, 12 Studies: Ahman, 2015, Sweden (A-); Ahman 2018, Tanzania (B); Ahman 2019, Norway (B); Edvarrdsson 2015(c) Australia (B+); Edvarsson, 2016(b), Rwanda (B); Hadicre 2020, UK (B-); Holmlund 2017, Rwanda (B+); Gameltoft & Nguyen 2007(c) Vietnam (B-)**; Reiso 2020, Norway (B); Stephenson 2020, Australia (B); Vesel 2019, Kenya (B); Williams 2002, UK (C)* | Few or minor concerns about the methodological limitations of 1/12 studies contributing to the review finding. | Minor concerns about adequacy of data as the finding is supported by rich narrative from a variety of settings and contexts | Moderate concerns about coherence as the finding incorporates personal and professional challenges alongside appropriate sources of support | Minor concerns about relevance as the finding relates to the experience of being a sonographer rather than the experience of performing ultrasounds | Moderate | Finding downgraded because of concerns about coherence and relevance |