Keeping baby SAFE in pregnancy: Evaluating the brochure

Keeping baby SAFE in pregnancy: Evaluating the brochure

Midwifery 29 (2013) 174–179 Contents lists available at SciVerse ScienceDirect Midwifery journal homepage: www.elsevier.com/midw Keeping baby SAFE ...

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Midwifery 29 (2013) 174–179

Contents lists available at SciVerse ScienceDirect

Midwifery journal homepage: www.elsevier.com/midw

Keeping baby SAFE in pregnancy: Evaluating the brochure Jane Warland, RN DipApp Sc (nurs) RM, PhD, Grad Cert Ed (uni teach) (Senior Lecturer) School of Nursing and Midwifery, University of South Australia, City East Campus, North Terrace, Adelaide 5000, Australia

a r t i c l e i n f o

a b s t r a c t

Article history: Received 1 August 2011 Received in revised form 26 October 2011 Accepted 13 November 2011

Objective: to gain a better understanding of women’s baseline level of knowledge of stillbirth and determine whether giving written information during pregnancy results in improvement in knowledge about stillbirth. Design: a pre–post intervention study. Setting: women undergoing antenatal care at a small maternity hospital were asked, via questionnaire, about their knowledge of stillbirth both before and after reading an information brochure on the subject. Participants: 22 pregnant women who were in the last trimester of pregnancy. Results: a statistically significant increase in knowledge was evident in awareness of the incidence in stillbirth (po 0.001). Women also were more aware of some of the proactive things they could do to prevent this tragedy from occurring to them. This improvement in understanding may be attributed to reading the brochure. Discussion: prior to reading the brochure all women understood the term ‘stillbirth’ but most lacked knowledge pertinent to understanding how often it occurs. The most significant difference noted between the pre- and post-intervention analysis was the improvement in women’s knowledge of the incidence of stillbirth. Further to this, prior to reading the brochure most women were unaware of action they themselves could take to reduce risk such as awareness of fetal movements, whereas after reading the brochure this was more likely to be cited. Conclusions: the results from this pilot study may indicate that a specifically designed information brochure explaining the incidence of stillbirth in plain language could enhance pregnant women’s knowledge. This area of study warrants further investigation, especially as to whether such knowledge is of an enduring nature or whether awareness results in reduced incidence. & 2011 Elsevier Ltd. All rights reserved.

Keywords: Stillbirth Women’s knowledge Information leaflet Written information

Introduction The incidence of stillbirth after 28 weeks, in most high income countries ranges between 2 and 5 per 1,000 births (Flenady et al., 2001). While this variation in prevalence suggests that there is scope for reducing stillbirth rate, in fact this rate has not changed in these countries for more than 15 years (Cousens et al., 2011). It is recognised that consumer awareness of stillbirth is one strategy, in raft of measures, which may reduce stillbirth cases (Flenady et al., 2001). Raising awareness of the existence of a health issue is often an important step to take in reducing cases. For example, as a result of the SIDS risk reduction awareness campaigns, the rate of SIDS in high income countries has reduced by as much as 83% (Hauck and Tanabe, 2008). The outstanding success of the SIDS public education campaigns demonstrates that increasing public awareness, alongside an education campaign about protective behaviours, can result in dramatic

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reduction in prevalence. Therefore, educating women about incidence of stillbirth and encouraging them to be aware of their pregnancy and unborn baby in order to minimise their risk, is both a potentially feasible and sensible step in attempting to reduce the occurrence of stillbirth. The aim of this pilot project was to determine the understanding pregnant women have of stillbirth, both before and after reading an information brochure on the subject. Research into stillbirth to date, has focused almost entirely on managing pregnancies with medical and obstetric risk factors, with little acknowledgement of the part a woman can play in protecting herself and her unborn baby (O’Leary et al., 2011). This research attempts to change the focus from what the maternity healthcare provider can do for the pregnant woman, to what the woman can do for herself in partnership with her provider. Changing focus from assigning risk and maintaining control of information to recognising the woman knows her body and her baby best is the very heart of woman centred care (Johnson et al., 2003). Once more it is hoped that this change in focus may precipitate a change in culture, in which the possibility that stillbirth

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sometimes occurs is discussed more openly during antenatal care than is currently the case.

Literature review Stillbirth is generally considered a taboo subject in society but also, of concern, by those providing antenatal care. On July 7, 2009 Goldenbach (2009), a staff writer for the Washington Post, published an article after the birth of his stillborn son, titled ‘Stillbirth gets short shrift, even from physicians.’ Blindsided by the tragic death of his son, he questioned why doctors never mentioned stillbirth as a possibility during his partner’s antenatal care. One reason for this lack of dialogue may be that maternity care providers believe that raising the topic of stillbirth would ‘scare’ women unnecessarily. In an article on this subject published in The Advocate, the medical director of Woman’s MaternalFetal Medicine Center is quoted as saying ‘Pregnancy is a joyous thing, but there are many things that can go wrong. If you sat down with a patient and told them everything that could go wrong you’d scare the hell out of them and no one would get pregnant’ (Cullen, 2009). Holding such a view could well be quite common to many maternity care providers. In fact, a survey conducted in the US by Pullen and Nalos (2009) showed that stillbirth is only mentioned as a possibility 11% of the time by antenatal care providers during antenatal visits. Another reason for not raising the topic of stillbirth may be the belief that it is not preventable. Some may believe that there is no point raising a potentially anxiety provoking topic, if little can be done to prevent it. Whilst it is accepted that much is still not known about the causes and contributory factors to stillbirth, there is certainly much that is known concerning modifiable risk factors (Fretts, 2005; Getahun et al., 2007). It is also well accepted that maternal awareness of her pregnancy, especially the activity of her unborn baby, accompanied by the woman reporting change, which care providers act upon can be protective against poor pregnancy outcome (Heazell et al., 2008; Preston et al., 2010; Stacey et al., 2011a). It therefore, behoves those who provide antenatal care to enter into a dialogue with women about stillbirth with the aim of reducing the risk of stillbirth.

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systematic review about information given at discharge from acute care, conducted by Johnson and Sandford (2005), suggest that the combination of verbal and written information compared to verbal information alone results in greater knowledge retention and in addition to this, prompts care providers to discuss care more thoroughly with the patient. In a discussion paper on the subject O’Donnell et al. (2006) also verify that patients are more involved in their care, have better understanding and more realistic expectations of medical procedures when given written information along with verbal. It is important to note that in order to persuade people to adopt any kind of behavioural change, it is not sufficient to simply instruct them act, instead they must first be made aware of the importance of the issue and give facts (Brown and Einsiedel, 1990), facts like incidence and prevalence. In public health literature such facts are often presented in analogous or comparative form such as ‘four jumbo jets full of women die each day in childbirth’ (SOGC, 2009). This kind of comparison helps the lay reader to understand and believe the importance of the issue for them, which in turn makes it more likely that the person will act on the public health message before them (Glanz and Bishop, 2010). To the question of when: One of the principles of Adult Education is the concept of providing learning opportunities ‘just in time’ (Derouin et al., 2005). This refers to information received at a time which best suits the learner, neither too early (before the learner is ready) nor too late (when the learner already knows the information). Pregnant women are bombarded in early pregnancy with much information both written and verbal. In keeping with the ‘just in time’ principle, information about stillbirth may be best kept until around 30 weeks when women are past the risk of miscarriage and looking forward to the live birth of their infant. At this time they may be more amenable to receiving information to make this positive outcome a reality for them. In response to lack of research in this area and in order to evaluate the effectiveness of giving written information about stillbirth to pregnant women, the aim of this pilot study was twofold; to determine women’s baseline knowledge of stillbirth incidence and to identify if giving them an information brochure about stillbirth would improve awareness.

Methods Effectiveness of written information If pregnant women should be given information about stillbirth, who will give the information, what form will the information take, and when is it best to give this information? Women gain information about pregnancy from a variety of sources, for example, a questionnaire-based study conducted in the UK on women’s understanding of induction of labour by Shetty et al. (2005) showed that midwives (50%) and obstetricians (16.9%) were the most common and important information sources for pregnant women. The next most important information source was written information (10.5%), followed by friends and relatives (8.9%) and media (4.5%). This suggests the answer to the ‘who’ question is midwives and obstetricians. To the matter of ‘what form will the information take?’ Although there has been no formal evaluation of written information for informing women about stillbirth, there is research examining this in other areas of patient education (Gurm and Litaker, 2000; Garrud et al., 2001; Epstein et al., 2004; Freda, 2004; Felley et al., 2008; Wilkinson et al., 2010). Whilst there is a degree of debate (O’Cathain et al., 2002; Stapleton et al., 2002) this body of research generally indicates that providing written information can be effective in increasing knowledge especially when used as an adjunct to verbal information given by the caregiver. For example, the findings of a

Women undergoing antenatal care at a small maternity hospital were recruited. This service provides a range of antenatal, birthing and post-natal care to approximately 330 women each year. Recruitment occurred over a period of three months, this short period was in order to meet the requirements of the funding body. Eligible participants were approached at the participating hospital’s antenatal clinic. This occurred as part of routine antenatal appointments. Women were given information about the study by a midwife when they arrived at the clinic. They then had some time to read and consider this information whilst waiting for their appointment. The midwife who saw them gave further information about the study, answered any questions and if they chose to proceed with the study administered the first questionnaire and finally gave them the stillbirth information brochure just as they left their appointment. At the next antenatal visit the questionnaire was repeated, to determine any improvement in knowledge. At that time participants were also asked their opinion of the brochure in terms of readability, content and visual appeal. Inclusion criteria were women in their final trimester of pregnancy and attending antenatal care at the participating hospital. Twenty-two women were recruited an estimated recruitment rate of 30%. All participants were aged 16 years and over; the age of

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consent for medical procedures in Australia. All participants were literate in English because the information brochure and other study materials were in English. The only exclusion criteria were women who had previously suffered a stillbirth, a group who would unfortunately already know about stillbirth. The aim of the research was to pilot the brochure concentrating on any differences in knowledge that women had before and after reading the brochure.

Study tools Questionnaire There was no existing tool to assess knowledge of stillbirth, therefore a questionnaire specifically for this project was developed. The first part of the questionnaire included maternal demographical information such as age, level of education, parity and main care provider. Questions concerning women’s knowledge of stillbirth consisted of one multiple choice and three free text ‘comment’ boxes. The post-intervention questionnaire did not repeat the demographic questions but included questions about the brochure. Information brochure Prior to writing the brochure a review of the literature was conducted in order to provide an evidence base for the information to be included in the brochure. Research identified in this search concerned modifiable and potentially modifiable risk factors for stillbirth (Fretts, 2005, Getahun et al., 2007). Then the brochure was drafted which aimed to address two criteria, giving information about stillbirth, what it is and how often it occurs (Laws and Sullivan, 2009), as well as providing information about some common risk factors such avoiding smoking in pregnancy, as well as taking note of fetal movements. There was consultation regarding content, and readability from both lay and expert members of the Board of SIDS and Kids SA. Data analysis In this study power calculations were conducted which estimated that 23 women, who were their own controls, would detect a one sample correlation with an a of 0.05 and power of 80%. Information gained from the first and second questionnaires was entered into SPSS (statistical package social sciences version 17). Data were analysed using a repeated measures student t-test. Unfortunately the small number of participants remaining in the post-intervention stage meant that cell sizes were too small to make a sensible analysis, however the results are included in this paper as they are still clinically interesting. Ethics approval statement Approval from both the University and the SA Health Human Research Ethics Committee (HREC) was gained for this study. Women who met inclusion criteria were given an information sheet, which meets [mid1] the usual ethical requirements. For example, they were assured that their personal information would remain anonymous and confidential, what to do if they changed their mind and who to contact if they required further information. Given the sensitive and potentially anxiety provoking nature of the brochure it was particularly important that the participating women were given time to consider their involvement in this pilot study. It was for this reason that participants were given the opportunity to ask the recruiting midwife any questions both on recruitment as well as later when she attended her next appointment.

Results Twenty-two pregnant women were recruited for the study and participated in the first questionnaire. The demographical information for the study participants is listed in Table 1. This table shows that participants were from a broad age range (mode age group 26–30) and were a mixture of nulliparous (n ¼9) and multiparous (n ¼13) women. The hospital is in a low socioeconomic area and the level of education reflects this, with only three women holding tertiary qualifications. Of the original 22, eight women were lost to follow up either because they birthed before they returned for their next antenatal appointment or they choose not to participate in the second questionnaire. There was a statistically significant improvement in awareness of the incidence of stillbirth (p o0.001) as well as improved understanding of risk factors associated with stillbirth. Women also provided helpful information about the presentation of the brochure, which was then revised. Understanding of the word stillbirth Participants were first asked to describe their understanding of what was meant by stillbirth by asking them to ‘briefly say what stillbirth is?’ All understood what stillbirth was both prior to and after reading the brochure. Typical responses were: Baby dead inside. Baby born already having passed away. Baby dies in the womb. Knowledge of incidence Women were asked to choose an answer to the question ‘In Australia how often does stillbirth occur?’ There were 5 options: 1:140, 1:560, 1:1,020, 1:10,000 or not sure. The most common response prior to reading the brochure was ‘not sure’ (n¼13/22) with only three making a correct choice viz. 1:140. The brochure presented comparative information about stillbirth rate in Australia compared to the annual road toll, indicating that the annual rate of stillbirths in Australia exceeds road deaths by up to 40%. After reading the brochure 12 of the remaining 14 women made the correct choice with one choosing 1:560 and one still being unsure (Table 2). Table 1 Demographics. Demographic information

N ¼ 22

Valid per cent

3 5 8 2 3 1

13.6 22.7 36.5 9.1 13.6 4.5

Highest level of education Secondary school Additional training (e.g. Apprenticeship, TAFE) Undergraduate University Postgraduate University

7 12 2 1

31.8 54.5 9.1 4.5

Main care provider Midwife Shared care (GP & Hospital) No response

20 1 1

91 4.5 4.5

Parity Nulliparous Multiparous

9 13

41 59

Age range 16–20 21–25 26–30 31–35 36–40 440 years

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Table 2 Correct answer before and after intervention.

What is stillbirth? How often does stillbirth occur?

Before intervention, n ¼22 n

% Correct %

After intervention, n ¼14 n

% Correct %

p-value

22 3

100 13.6

14 12

100 85.7

N.S. o 0.001

Knowledge of risk factors for stillbirth? The third question was an open ‘comment’ question, which asked participants to ‘list as many things that increase risk of stillbirth as you can’. Prior to reading the brochure, six participants indicated that they did not know any risk factors for stillbirth. Those who did respond listed risk factors mostly centred around knowledge of the link between lifestyle factors like alcohol, smoking (n ¼14/22) and stillbirth. Some were also aware of dietary factors such as avoiding unpasteurised cheeses and ready to eat meats (n ¼5/22), a few also mentioned that stillbirth can result from medical/obstetric problems such as diabetes and hypertension (n ¼7/22) and fetal abnormalities (n ¼4/22). After reading the brochure all participants included these lifestyle and dietary factors and they also included information gained from the brochure like small baby, obesity, twins, and maternal age. Preventable risk factors for stillbirth Participants were then asked to ‘Please list some things you can do to reduce your chances of stillbirth’. Prior to reading the brochure participants made general comments like ‘keep fit and healthy’. After reading the brochure all participants became more specific with most identifying the importance of modifiable risk factors listed in the brochure such as awareness of fetal movements (n¼5). The second questionnaire also included questions specific to the brochure. Firstly, the participants were asked if they had received and read the brochure. They were instructed not to complete the rest of the questionnaire if they had not in fact read the brochure, however, all remaining participants indicated that they had both received and read the brochure. They were then asked eight questions about the best and worst aspects of the brochure and whether they had discussed it with their family and friends. The best aspects of the brochure fell into three categories, participants identified that it helped them understand what stillbirth is (n¼8), its risks (n¼8), and things they could do to reduce risk (n¼10). When asked to state what was ‘not so good about the brochure’ five participants left this comment box blank. Of those who responded one made mention of the fact that there was ‘a lot of information to take in’ and another suggested that the information was given ‘too close to her due date to be of use’ (37 weeks), three responded that they had been made acutely aware of the reality of stillbirth. There were four questions asking who they had discussed the brochure with, three indicated that they had discussed it with their partner, three with family and friends and four with their obstetrician/ midwife. Only one participant indicated yes to more than one of these options (choosing ‘partner’ as well as ‘family and friends’) meaning that five participants selected ‘no’ for all four options. The question asking ‘since reading the brochure have you tried to find out more information about stillbirth’ was universally answered ‘no’. Finally participants were asked to comment on the content, presentation and readability of the brochure. Participants took the time to give feedback about each of these with some saying that they wanted more information about what they themselves could do, the most poignant of these comments was: Just tell me what I need to do to stop this from happening to me. As a result of this feedback, information that the woman herself could do little or

nothing about during late pregnancy (e.g. maternal age, SGA, twins) was removed and the focus of the final brochure was changed from those things women should not do (such as smoking and gaining too much weight), to four simple things women can proactively do to increase awareness of her baby, and her body during mid to late pregnancy. In this final version the acronym SAFE was adopted. SAFE stands for Sleep, Appointments, Fetal movements and Expert advice. It is outside the scope of this paper to discuss in depth the rationale for each letter however in brief:

 S: aims to encourage women to be aware of their body and

  

their baby even as they settle to sleep and if they wake during the night. This section includes the suggestion to settle to sleep on the left (Stacey et al., 2011b; Warland, 2011). A: reminds them that it is okay to discuss their concerns and ask questions during antenatal visits (Fereday et al., 2009; Dowswell et al., 2010). F: encourages the woman to being aware of who her baby is, how her baby moves and immediately report if there is a change (O’Sullivan et al., 2009; Preston et al., 2010). E: asks the woman to monitor her own pregnancy and promptly report any concerns (Gilbert, 2011).

The brochure is not meant as a recipe to prevent stillbirth but instead specifically aims at raising awareness of stillbirth and offers these four suggestions as a means to encourage women to be more aware of their body and their unborn baby at all hours of the day and night in late pregnancy in order to be able to report concerns and changes. The final brochure is available online by following the link from the ‘welcome’ page at http://www.facebook.com/safepregnancyAU.

Discussion This study demonstrates that prior to reading the brochure participants had some knowledge of what stillbirth is, but very limited knowledge about how often it occurs. Following reading an information brochure on the subject most women knew the incidence and were more aware of the reality of stillbirth. Stillbirth, like any other poor outcome of pregnancy, needs to be raised and discussed during pregnancy. The onus of giving this information rests with the care provider particularly as this study shows women do not know about the incidence of stillbirth. Whilst it is recognised that not all women will wish to engage in this discussion it is important that women are informed about the reality of stillbirth as if they are not then they can do nothing to try to protect themselves. Women depend on consultation with their carer to gain direction and make decisions that are most important to ensuring the health and well-being of themselves and their unborn baby. Although this study shows that giving written information improves women’s knowledge, it is probably unreasonable to believe that all this information will be retained (Freda, 2004) especially if it is given too early in the pregnancy. It is therefore important that information is given ‘just in time’ in the third trimester and in tandem with verbal information given by the care provider.

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Midwives are required to provide women with enough accurate information to enable them to be able to make their own decisions regarding their care (ANMC, 2006, 2008). The basis of woman-centred or relationship based care is that women and their care providers act in partnership to enable the woman to fulfil her needs and wants for her pregnancy and birth (Johnson et al., 2003). This model of care facilitates sharing of information and gives women every opportunity to be advocates of their own experience. It is therefore difficult to contend that withholding information about the reality of stillbirth is helpful or even ethical. Women are often given a large amount of information, both written and verbal at the first antenatal visit when midwives and other care providers may not have the time to discuss all this information in full with the woman (Stapleton et al., 2002). The information also needs to be succinct, one study gave women a 73 page pregnancy pocket book and perhaps unsurprisingly found that many women in their study did not access it (Wilkinson et al., 2010). Information also needs to be given alongside comparative information, which speaks to the importance of the health promotion message (Glanz and Bishop, 2010). It is therefore important that information about stillbirth is given when the woman needs it ‘Just in time,’ is succinct and framed as important and relevant. Seeking ways to make this information accessible without being ‘scary’ is a necessary, albeit difficult, challenge in the fight against stillbirth. Part of this fight is overcoming the taboo and stigma associated with stillbirth. Almost none of the participants stated that they had discussed this brochure with anyone. The fact that these participants were reluctant to discuss with their partner, family and friends or even their care provider speaks to the taboo and perhaps even superstition around this topic. Overcoming this taboo may be lengthy and somewhat difficult task however, the potential benefits of seeing a reduction in stillbirth as a result of awareness and discussion is surely worthwhile. Finally it is acknowledged that some stillbirths are going to occur no matter how vigilant the mother. Unfortunately, some pregnant mothers will do all the ‘right’ things and still suffer the loss of the baby. Negative emotions such as guilt and shame are common responses following perinatal loss in both women and men (Barr, 2011) whether or not there is a valid reason to feel guilty. This means that after stillbirth occurs, care providers should be careful to debrief with families about the things they did in the pregnancy to try to keep the baby safe and reassure them that whatever actions they took, are an indication of ‘good’ parenting rather than something that should be used as a source of ongoing self blame and negativity.

chose this option in the first questionnaire, perhaps indicating that they were not prepared to guess. Therefore, the observed change from ‘not sure’ to the correct answer was likely a result of knowledge acquisition from the brochure, rather than a guess. Finally, the issue of whether or not informing women of the reality of stillbirth may result in increased anxiety and perhaps even result in the very outcome that one is trying to avoid was not able to be examined due to the small sample size. This would be important consideration in future studies. Strengths Statistically significant differences in knowledge in this preand post-intervention study indicates the potential advantages of providing written information in improving women’s knowledge. In addition to this, those results which were not tested due to small sample size did still show a clinically interesting improvement in knowledge. Conclusions As the incidence of stillbirth has remained unchanged for many years there is the need for greater emphasis on improving public awareness and understanding. Results from this pilot study indicate that offering women written information improves knowledge and awareness of stillbirth incidence. Whilst care providers are a most important and significant source of information for women during pregnancy, they may be reluctant to discuss stillbirth with pregnant women. An information brochure may be useful to facilitate such discussion. The value of this discussion lies in women becoming aware of the reality of stillbirth and thus allowing her the opportunity to adopt protective behaviours to assist in minimising risk. An information brochure distributed to women in the third trimester of pregnancy is suggested. Introducing an information brochure at this time is likely to avoid the information overload occurring in early pregnancy. Further it is ‘just in time’ for women to be looking forward to the life birth of their infant and looking to adopting protective behaviours to make this outcome a reality for them. Giving written information does not abrogate responsibility of the care providers to discuss stillbirth with the woman and both written and verbal communication is probably better than just written information alone. This area of study warrants further investigation into whether being aware of stillbirth results in protective behavioural change, which in turn results in reduction of stillbirth rates.

Limitations The content, legibility and readability of the brochure were not specifically examined in this study. However, it can be implied from the results of this study that the participants understood the content because their understanding improved. The sample size for this pilot study was very small. The study approach was largely constructed to meet time restraints placed by the funding body requiring results within one year. The number of women who were approached to participate in the study and declined was not recorded. This small sample size meant that comparisons could not logically be made on demographic data nor could the affect of age, education, or parity on outcome measures be specifically examined. The incidence question was a multiple choice question. Although this was primarily in the interests of making it as easy as possible for the participants to quickly complete the questionnaire, it had the potential to affect assessment of the women’s actual knowledge because they had the option to guess. Including the option ‘I’m not sure’ for this question was an attempt to minimise this risk and most

Role of the funding source The production of the brochure was funded by the Community Enterprise Foundation, an initiative of the Bendigo Bank Group.

Conflict of interest The author declares no conflict of interest associated with this study.

Acknowledgements This study was conducted with the help and support of the following people:

 The midwives and obstetricians of the participating hospital. With special thanks to the efforts of Sonia Angus and Gerry Lloyd.

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 All the women who took the time to participate in this study at 

a very special time in their lives. Members of the board of SIDS and Kids SA.

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