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A search for hope and understanding: An analysis of threatened miscarriage internet forums
Midwifery ∎ (∎∎∎∎) ∎∎∎–∎∎∎
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A search for hope and understanding: An analysis of threatened miscarriage internet forums Debra Betts, RN, BHSc (Acupuncture) (PhD candidate)a,n, Dr Hannah G. Dahlen, RN, RM, BN (Hons 1st), M (CommN), PhD (Professor of Midwifery)b, Dr Caroline A. Smith, LicAc, BSc (Hons), MSc, PhD (Professor)a a b
Centre for Complementary Medicine Research, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia School of Nursing and Midwifery, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia
art ic l e i nf o
a b s t r a c t
Article history: Received 21 August 2013 Received in revised form 15 December 2013 Accepted 16 December 2013
Objective: threatened miscarriage is a common complication of early pregnancy, which increases the risk of miscarriage or pregnancy complications such as premature birth. Currently there is limited evidence to recommend beneficial medical treatments or lifestyle changes, resulting in a ‘watchful waiting’ approach. The aim of this study was to describe women0 s experiences of threatened miscarriage through examining postings to Internet discussion forums. Design: a Goggle alert for threatened miscarriage was created with emails containing hyperlinks sent to the first author and collected over a seven month period (April to November 2011). Data was analysed using thematic analysis. Findings: one hundred and twenty one discussion threads were collected. The overarching theme that emerged was one of ‘a search for hope and understanding’. Within this there were four sub themes that illustrated this search. ‘A reason for hope: stories and real life experiences’ illustrated how women sought hope for a viable pregnancy through others. ‘Becoming the expert,’ captures how women gave advice from their own experiences. ‘A safe place to share’ and ‘connecting to empathic support’ illustrates how women used this medium for long distance support. Key conclusion: internet discussion forums were used by women to seek hope and support they were not receiving from their health professionals. Women urged each other to remain hopeful despite a negative medical prognosis. There was an acceptance of a lay expertise within the forums that was valid enough to challenge medical expertise. Implications for practice: health practitioners may need education that helps them balance their delivery of medical information with hope in order to increase feelings of trust. With women seeing the Internet as a useful form of support, it may be relevant for practitioners to consider recommending relevant Internet sites and discuss this with women. & 2014 Elsevier Ltd. All rights reserved.
Keywords: Threatened miscarriage Pregnancy loss Internet forums Thematic analysis
Introduction Threatened miscarriage involves a history of vaginal bleeding, with or without abdominal pain, a cervical os that remains closed and a presumed viable pregnancy (Swer and Jurkavic, 2011). This is a common complication of early pregnancy, with an estimated 20% of pregnant women experiencing this in the first 12 weeks of their pregnancy (Everett, 1997). Although the risk for miscarriage is reduced following confirmation of cardiac activity on ultrasound, women with light vaginal bleeding have twice the rate of n Correspondence to: Centre for Complementary Medicine Research, University of Western Sydney, Locked Bag 1797, Penrith South, NSW 2751, Australia. E-mail addresses: [email protected] (D. Betts), [email protected] (H.G. Dahlen), [email protected] (C.A. Smith).
miscarriage when compared to pregnancies with no vaginal bleeding, and four times the risk with heavy vaginal bleeding (Weiss et al., 2004). These pregnancies are also associated with events such as antepartum haemorrhage, and premature childbirth (van Oppenraaij et al., 2009; Saraswat et al., 2010). The evidence to date fails to support the use of medications or lifestyle interventions to improve birthing outcomes (Aleman et al., 2005; Empson et al., 2005; Devaseelan et al., 2010; Wahabi et al., 2011), resulting in a ‘watching waiting’ approach with medical monitoring. Although providing emotional support for these women is mentioned within midwifery and nursing literature, no recommendations are given as to what this advice or support may consist of (Tien and Tan, 2007; Webster-Bain, 2011). While emotional issues have been explored within the literature around women0 s experience of miscarriage (Beutel et al., 1996;
0266-6138/$ - see front matter & 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.midw.2013.12.011
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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Geller et al., 2004; Lok and Neugebauer, 2007; Brier, 2008; Mann et al., 2008), the care they receive from health professionals (Evans et al., 2002; Rowlands and Lee, 2010), and support received through miscarriage Internet forums (Gold et al., 2012), they remain unexplored for threatened miscarriage. Although a qualitative study did identify this knowledge gap and aimed to explore the experiences of women presenting for early pregnancy problems (Warner et al., 2012), the majority of women had experienced pregnancy loss at the time of their interviews. This resulted in pregnancy loss reported in all the themes. It may be that women with a viable pregnancy have different experiences and interactions with health professionals. It may also be that there are important emotional considerations for women presenting with threatened miscarriage that have not been adequately identified by health professionals. Social media may be a valuable source of information for health researchers, offering flexibility in terms of time, access to a population not limited by geography, and anonymity which may offer different insights compared to traditional face-to-face encounters (Eastham, 2011; Chen, 2012). Data can be collected from official medical, media and governmental sites, as well as more informal personal blogs and discussion forums. Personal blogs are set up by authors for self-expression, and have been compared to online versions of diary-keeping or letter-writing (Friedman and Calixte, 2009). Discussion forums differ in that they can be seen as a written ‘real-time’ conversation discussing a specific topic of interest. As such, these responses offer researchers different insights from personal blogs and face to face encounters. Theoretically these forums may be similar to non-participant observation but present unique challenges due to a use of a text medium and the lack of face to face interaction (Bradley and Carter, 2012). There are also challenges relating to consent, privacy and identification verification that are problematic, requiring further debate and ethical guidance to develop the Internet as a credible medium for data collection ( Holmes, 2009; Bradley and Carter, 2012). Online discussion forums are free to access and easy to locate through Internet search engines such as ‘Google’. Whereas some discussion forums are structured so that people join as members and carry out private conversations, many are open for public discussion and viewing. Whereas entering the terms ‘threatened miscarriage’ into a Google search engine demonstrates multiple discussion forums actively receiving postings, to date how women and their partners use these forums has not been examined within nursing, midwifery or medical literature. The aim of this study was to describe women0 s experiences of threatened miscarriage through examining postings to Internet discussion forums.
containing hyperlinks corresponding to the search terms specified. These alerts were viewed by the first author, and those relating threatened miscarriage forums were stored in a word document for further analysis. The creation of these word documents followed the initial thread posting and ranged from a single reply to several A4 pages. Quotes were de-identified by using the first two letters of the pseudonym supplied, followed by a number created for each of the discussion threads, and then by the page number for that discussion thread. Thus a comment made by ‘worried mumma’ collected as the third discussion thread where the comment occurred on the second page of data is represented as (WM/3/2). Data analysis Thematic analysis was used to formally analyse and code the data. Thematic analysis was used because it unearths patterns in the data, allowing for the discovery of the true meaning of the data (Boyatzis, 1998; Grbich, 2007). Although thematic analysis is not always acknowledged as a specific method of qualitative analysis, it is a technique widely used as foundation within qualitative analysis (Braun and Clarke, 2006). Indeed Braun and Clarke (2006, p. 80) argue that ‘a lot of analysis is essentially thematic but is either claimed as something else or not identified as any particular method at all.’ Six phases to performing thematic analysis have been identified by Braun and Clarke (2006) and these were used as a guide as outlined in Table 1. Seventy-two initial threads were collected over a four-month period (22 April 2011 to 21 August 2011) with these ranging from a few sentences to six A4 pages of data. Following initial coding and analysis for initial themes, data collection continued for another three months, to ensure that saturation had been reached with no new themes identified. A total of 121 threads were collected. Determining saturation can be complex, and whereas the concept of saturation is often described in literature as the point at which no new information or themes are observed in the data, practical guidelines for determining sample size are virtually nonexistent (Guest et al., 2006). For this data collection, saturation was defined as ‘the point in data collection and analysis when new information produces little or no change to the codebook’ (Guest et al., 2006, p. 65). To reduce possible researcher bias Nvivo 9 was used to record coding, this allowed coding categories to be sent to the second and third author for comparison and verification. In addition when searching for, reviewing and defining themes a content comparison process was used to provide critical feedback and reflection amongst three authors. Ethical considerations
Methods A qualitative study was undertaken, using internet discussion forum posts as the source of data for this study. A qualitative method was seen as most appropriate as it is ideal when seeking to collect and analyse data where little knowledge is available as it seeks to answer ‘what’ questions. Over a seven month period, from April to November 2011, Internet forum discussions were received by the first author. An Internet alert from the search engine Google was created through using the Google search engine; a free service where alerts are posted directly to an email address. To create this alert the Google Alert home page was accessed and the search terms ‘threatened miscarriage’ and ‘threatened abortion’ entered. The information type selected was for ‘everything’, delivery frequency as ‘daily’ with the option of receiving ‘all results’. The contact email address given as belonging to the first author. Daily emails were received
Ethical principles concerning informed consent, participant confidentiality and privacy arise when using online data collection (Kralik et al., 2005). Although within discussion forums deidentifying data can be used for confidentiality and privacy, it has been cautioned that within small online communities comments may be easily identified through a Google search and therefore participants should be approached for consent (Eysenbach and Till, 2001). However, within larger online discussion forums people may only comment once or intermittently, making direct contact with participants difficult. It has been argued that although ethical approval is required for data posted as private conversations, this is not considered a requirement for data that is publically posted (Eastham, 2011). The approach for this study mirrors studies where ethical approval was seen as unnecessary when accessing public internet postings (Dahlen and Homer, 2011, 2012) Participants within this study were aware they
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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Table 1 Six phases used for thematic analysis. Familiarisation with the data Generating initial codes Searching for themes Reviewing themes Defining and naming themes Producing the report
Data was read and re-read before being entered into the computer program Nvivo 9 as a word document. Nvivo 9 was used to create codes for interesting features of the data. Codes created and the selected data of interest placed in each code. Codes were grouped into potential themes through creating charts within Word documents. Initial themes were checked with previous coding and the word documents through a comparison process undertaken with researchers (CS and HD). On-going analysis undertaken, refining the specifics of each theme and generating clear definitions and names for each theme. Final analysis through writing a report. This involved selecting vivid compelling examples from the data and relating these examples in relationship to the research question and literature.
were posting on a forum with public access. To ensure participants did not have expectations of restricted public access, data collection was only undertaken with ‘implied consent’ from forums that required no password or forum membership (Bradley and Carter, 2012). Findings A total of 121 online forum postings were collected. Although the postings were usually made by women, there were two initial postings made by men whose partners had received a threatened miscarriage diagnosis. The main theme that emerged was one of ‘a search for hope and understanding.’ Within this there were four sub themes that illustrated this search, ‘a reason for hope: stories and real life experiences’, ‘becoming the expert,’ ‘a safe place to share’ and ‘connecting to empathic support’. A search for hope and understanding This main theme captures how women experiencing threatened miscarriage were seeking hope for a positive pregnancy outcome and the understanding of others who had experienced a similar situation ‘please anyone give me your stories if u had one like mine and your baby was healthy’ (E/73/1). This desire for hope was expressed overtly by those asking for positive stories and experiences and through reply postings urging women to remain hopeful, that until there is definite proof that they are miscarrying, no matter what the medical prognosis, they are still pregnant. The search for understanding was woven throughout the postings, with women seeking out others in similar circumstances and the replies providing support. Women discussed with each other how they had coped using nonjudgmental postings to express concern. This search for hope and understanding is captured in the following subthemes. A reason for hope: stories and lived experiences A forum posting typically commenced with details of a bleeding episode where a health professional had given a woman the diagnosis of threatened miscarriage. The overwhelming nature of these postings were asking if others in similar circumstances had gone on to have a successful pregnancy. Although a direct appeal was made for positive stories, real life experiences were also deliberately sought and viewed as having a credibility that was unavailable through Internet information sites or their health care professionals: I am trying to get other people0 s experience on these issues because I just want to know more information and I already googled all I can. I am not asking for medical advice because I am already talking with my OBGYN I just want your experiences (T/2/1).
Although it was not always possible to gather a detailed picture for the precise circumstances of all postings, it was evident that for some this search for hope was in the face of medical caution to prepare for a potential miscarriage: The midwife basically told me that the baby is unlikely to survive as there is too much blood and to expect a miscarriage, so I0 m here at home waiting, I0 m still bleeding but haven0 t passed anything, has this happened to anyone and they have gone on to have a successful pregnancy? (M/25/1). A reason for hope was typically given within the postings through women sharing their experiences of how they continued with a healthy pregnancy. Further reasons for hope were provided through the stories of women who had viable pregnancies after being told that they had miscarried. These were discussed as triumphs in the face of medical advice that there was no hope and the postings clearly challenged medical expertise: I had bleeding at 5, 8 and 10 weeks of varying levels. Each time I was told a miscarriage was inevitable and on one case was told to go to the hospital to get some medication to finish the miscarriage off. Well good thing I didn0 t as my ‘miscarriage’ is now 2! (HM/92/3). The medical terminology used in these postings assumed an expertise in both interpreting and understanding medical diagnostic information and the right for women to dispute that the diagnosis they had been given was correct: Told my HGC levels were only at 460 and needed to be in the 10,0000 s. They said my ultrasound showed NOTHING in my uterus. So I had ‘miscarried.’ I never miscarried. Now I0 m almost 30 wks pregnant. So in a nutshell get a second opinion. Doctors don0 t always know everything (NB/111/2). As well as these stories of continuing and ‘miracle’ pregnancies, hope was also offered for future successful pregnancies. These stories were told with an understanding of what it meant to experience miscarriage. However, these stories were less common than the ‘miracles’ or the ‘against all odds experiences’ put forward: I0 m so sorry. This happened to me and I was devastated but if I hadn0 t of lost that bean I wouldn0 t now be pregnant with this baby boy, who I love so much already. For me it was just meant to be (BF179/12/1). Becoming the expert This sub theme captures how women sought out and gave each other what can only be seen as medical diagnostic information online. A clear challenge to medical authority was evident in both those posting and responding, with some women actively
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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requesting specific advice relating to medication, further medical treatment or diagnostic tests they should be seeking. There was an acceptance of a credible expertise amongst those giving advice through having experienced threatened miscarriage. This advice included reassurance about diagnostic procedures, explaining medical terms and the likely cause of bleeding as well as making a prognosis from the information posted: Some women have a sub-chorionic bleed. It0 s nothing major usually just a tear in the lining causing bleeding (M13/22/2). Spotting is also very normal at almost any point in pregnancy. As long as it does not turn into a ‘period’ type bleed then you are OK (PG2/ 65/2). At times this advice was given with an authority that actively dismissed the medical information the woman had received: Really?? he said it could be a complete miscarriage?? That0 s ridiculous because a small amount of bleeding as you0 ve described with I0 m assuming not much pain if any? That0 s all normal!! You know what honey the more I think about it, the more I believe you0 re fine!! Honestly if you were in a lot more pain with a lot more blood then yeah I0 d say be worried but seriously these doc0 s should know what normal pregnancy symptoms are (LA/86/2). Women also suggested changes to lifestyle that might assist in preventing miscarriage, giving women hope and that there were diet and lifestyle activities that would make a difference. This was presented as experience based knowledge to counter the medical advice that there was nothing that women could actively do except wait and see: Actually there are many ways to prevent a miscarriage…first you need to eat a lot of healthy foods, cut back on the chips and drink a lot of fluids and drink light soda, do not take a extremely hot shower yes they are lovely but that is a no no……and a miscarriage may happen but if you eat right get enough sleep and take prenatal vitamins for 6 months you will be fine (K/95/2). Examples of how women had diagnosed themselves with something other than a threatened miscarriage were also used to provide women with hope. It was implied that if bleeding was related to another cause; such as cervical polyps, a sub-chorionic haematoma or a vanishing twin, pregnancy outcomes would be more positive. Once again this is presented from the perspective of personal experiences being a powerful contradiction to the information women have been given by their medical practitioners: I was labelled with a threatened miscarriage two times but I didn0 t believe it. I was just bleeding with no cramping at all. I did some research and found some information on Cervical Polyps and for sure that0 s what I had. (HH/11/2) Other postings discussed treatments for threatened miscarriage, such as progesterone supplementation and how it was possible to prevent miscarriage through accessing this care. There was a sense in these postings that if women had not been offered this treatment, it was due to a deficiency in the medical care they had received. There was a clear sense that it was not acceptable to ‘do nothing’: What was your doctor0 s response after u mentioned progesterone? It0 s so frustrating with times like this when they say, ‘it0 s no one0 s fault’ or ‘there0 s nothing that can prevent it!’ There is something that can be done and you should demand it. Don0 t worry about pissing anyone off at the doc0 s office. I would be on the phone with them as soon as they open (BC/63/1).
A safe place to share For many women the Internet was seen as being a safe place to share their thoughts and feelings with others who would be accepting. This included how difficult they were finding it to feel excited about being pregnant. ‘I don0 t know how to feel anymore. I0 m afraid to be happy to find out in a few weeks that my LO [Little One] has passed’ (SC/48/1). Women also expressed concerns that the stress and anxiety they were feeling would negatively impact on this pregnancy, problems with being on bed rest when they had other children to care for and feelings of guilt that they might somehow be responsible for the bleeding. As well as sharing their concerns, the forum was a place to discuss their partner0 s reactions. The anonymous nature of the Internet and ability to use pseudonyms made this highly public medium also feel private and safe for women. Abbreviations were also used to describe their partners as though this also added to the anonymity. ‘DH [Dear Husband] seems to be fine with everything, acting like I shouldn0 t be worried. I0 m super worried. How can he be so calm’ (J/69/2). For many women the forum was a place to express their dissatisfaction with medical care. This included the care currently being offered and their experiences in the past. Women discussed what they perceived as substandard care and a lack of medical monitoring and how it affected their pregnancy: …the midwife nicked my womb and now I0 m bleeding a lot as a result. I0 m now worried about baby as they only checked heartbeat on doppler but I have a doppler and so knew the hb [heart beat] was there. I wanted a scan for reassurance… (T/ 74/1) The language and manner by some health professionals was also perceived as insensitive ‘dr. said I will probably pass my baby in the toilet (how sympathetic!)’ (MH2/21/1). The behaviour of some health practitioners was also seen as lacking respect for a woman0 s ability to understand what was happening: …the rudeness of professionals these days are bit much. No bedside manner or respect. Like they don0 t want to be bothered with questions or because you aren0 t a doc you don0 t know anything (M/35/2). This perception that the forum was a safe place to share a range of feelings without receiving criticism remained true so long as women obeyed the forum protocols. An exception to this was an instance when a woman received criticism after posting a photo of bleeding in her underwear: People don0 t want to see your bloody panties, simple as that. There was no paragraph leading up to the picture, no warning, no nothing. It0 s gross… What feedback & advice do you smurfing want? Oh no your undies don0 t look like they have blood on them and you0 re not miscarrying?? (BF/18/6). A connection to empathic support Internet forums provided the opportunity for women to receive long distance support and empathic advice from those who understood their experiences. The focus of these postings was in providing an emphatic response through positive thoughts and prayers, advice about self-care and raising concerns about seeking further medical advice. For many of those posting it was important that others were sending them positive thoughts and prayers with specific requests made for this support: If you pray could you pleeeeeease say a quick prayer for me and LO [little one] or if you don0 t send good vibes or positive thoughts my way…I really really want this baby more than anything and any t&p [thoughts and prayers] from whoever can spare them would make me feel a little better (CT/81/1).
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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This long distance ‘thought support’ was viewed as helpful with numerous messages referring to positive thoughts and prayers being sent to those making the initial posting. Although some were directly religious, referring specifically to God and prayers, the majority referred to general good wishes with concepts such as ‘sticky babies’ and ‘sticky dust’. These references to the medical terminology for implantation and viability dominated the forums as women reframed medical terms into language they could relate to: I0 m sending you good thoughts that this baby sticks and that what you are facing is just a small speed bump in this pregnancy. We are here for you (K/70/2). The advice given within these forum postings contained practical physical and emotional actions that women could take, with an emphasis on providing personal experiences. There was an emphasis on taking all action possible with an understanding of how difficult this could be. Specific efforts were made to moderate any advice to accommodate women in difficult circumstances, such as those caring for other children. The advice women gave each other included resting as much as possible, to stop having sex, to drink plenty of water and purchase a Doppler so they could listen to the heart beat for extra reassurance. Emotional advice included honouring this pregnancy and accepting that you may not be able to control the eventual outcome. Although the majority of postings involved positive stories, there were postings that warned women pregnancy loss was a possibility. Postings that mentioned pregnancy loss in a factual way, without a personal or empathic connection, were scarce and usually ignored. The overwhelming majority were posted with empathy discussing the reality of pregnancy loss with a background of personal experience and empathy. They inevitably held a glimmer of hope: I know how terrifying that can be. Sadly this early it0 s really tough to say. I had a threatened miscarriage ….the doctor said there was a 50/50 chance it would sort itself out, unfortunately I lost my little one. This time around I had the same spotting and was terrified the same thing was happening … only time will tell how things will turn out. (LB/1/1). Although the majority of the interactions questioned medical authority and knowledge, some women expressed their concern that women should seek further medical attention. This advice was again based on past experience and given with great empathy. Even when the outcome being described in the post was adverse it was done in a way that still balanced some hope with reality and caution: I feel I need to tell my story here as I really think you should go to the Hospital hun. I didn0 t know I was pregnant until I started getting a niggle in my right side…2 days later I woke with a severe pain in my right side – I was rushed into surgery an hour later where they removed my right tube. The recovery wasn0 t nice emotionally or physically. I0 m not telling you this to scare you, I0 m telling you this so that you don0 t go through what I did… I0 m only telling you this as a precaution and I really do wish you the best and that you are just too early on to see bubba. (T/104/3).
Discussion The overarching theme in this study was one of searching for hope and understanding when experiencing threatened miscarriage. Hope has been described as a human response associated with a beneficial therapeutic value for those coping with stressful life experiences (Stephenson, 1991; Kylmä and Vehviläinen-
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Julkunen, 1997; Valle et al., 2006; Folkman, 2010). Existing theories of hope involve theological, philosophical and theoretical concepts (Herth and Cutcliffe, 2002a). From six definitions in health care literature Herth and Cutcliffe (2002a) identified three shared key elements: that hope was dynamic, future oriented and an individualised experience. Beneficial consequences of hope have also been identified. These include the ability to cope with stressful stimuli (Benzein and Saveman, 1998), providing a time of protection or buffering when adapting to an stressful event (Valle et al., 2006), as well feelings of empowerment that can assist self-care (Benzein and Saveman, 1998). In midwifery and nursing literature, hope is discussed as providing holistic care – as an important coping strategy with beneficial effects to reduce stressful experiences for patients and their families (Stephenson, 1991; Kylmä and VehviläinenJulkunen, 1997; Amendolia, 2010) with discussions on hope for speciality areas of practice (Cutcliffe and Herth, 2002a, 2002b; Herth and Cutcliffe, 2002a, 2002b, 2002c). However, the specifics of how hope is provided, enhanced or maintained by practitioners is an area in which many questions remain unanswered (Herth and Cutcliffe, 2002a). When there is the possibility of early pregnancy loss, hope for an ongoing pregnancy versus the loss of this hope has been identified as a part of women0 s experiences (Wojnar et al., 2011). It was evident that women posting in the threatened miscarriage forums were pregnant at the time of their initial posting and were specifically seeking hope for a continuing healthy pregnancy from those with similar experiences. The use of discussion forums as an online space to seek hope and support is also a finding for women with postnatal depression (Evans et al., 2012). However, what was noticeable within the findings from the threatened miscarriage Internet forums was that for some women this hope involved not only the positive stories of others but also challenged medical authority. This challenge was evident in the postings suggesting that the diagnosis and information women had been given by their health professionals was incorrect or that there was beneficial treatment that they had not yet been offered. The ‘against all odds’ and ‘miracle stories’ offered by women to give others hope were usually presented as mistakes and errors by the western health practitioners involved. These stories suggested that advice to proceed with medical or surgical management could not always be trusted and urged woman to remain hopeful and to seek another opinion. This advice reflects the reporting that can be found within public media with newspaper articles and websites reporting cases of miscarriage misdiagnosis (Corderoy, 2012; Cari, 2013). Although medical literature in early pregnancy focuses on the need for more accurate diagnostic information in order to reduce stressful waiting for women with a probable miscarriage (Adam et al., 2011; Bottomley et al., 2013), women appeared to welcome diagnostic uncertainty. It may be that discussing diagnostic uncertainty is beneficial for women through acknowledging the possibility for hope, while minimising the potential for medical misdiagnosis for practitioners. It has been suggested that hope may serve as a protective coping strategy for parents facing preterm childbirth and of neonatal infants (Amendolia, 2010; McKechnie and Pridham, 2012). Women in the threatened miscarriage forums discussed how they valued the experiences of others and found receiving positive thoughts supportive, even when posting about a subsequent pregnancy loss. It is possible that discussion forums, provided women and their partner0 s with beneficial support even when the pregnancy outcome was a miscarriage, but further research is needed to explore this. In addition to providing hope, altruism and catharsis have been demonstrated as important emotional benefits available through online support (Vilhauer, 2009). It is possible that participating
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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in these threatened miscarriage forums provided women with enhanced self-esteem through being able to give advice to others and was beneficial through allowing women to express their feelings of anxiety and any frustrations with the medical care they received. A further finding of the postings was that women sought hope through finding an alternative diagnosis to that of threatened miscarriage. This was expressed as advice that minimal, light red bleeding and light abdominal cramping were normal in early pregnancy, or that their symptoms may be the result of another pregnancy problem. It was also expressed that medications such as progesterone could be offered as a treatment. This ‘expert lay opinion’ remained unchallenged despite at times being clearly inaccurate. The majority of participants also challenged medical advice that ‘there was nothing they could do.’ Personal empowerment has also been identified as a beneficial outcome of hope, with hope involving a process of setting future oriented goals, engaging in hopeful behaviour and relating to feelings of control (Stephenson, 1991; Farran et al., 1992). These aspects of hope were present for women posting on the forum with women expressing how beneficial it was to have access to relevant self-care advice as they attempted to remain positive. The potential for online information to lead to misunderstandings and miscommunications and affect the therapeutic relationship between practitioners and their patients has been raised as a potential concern (Taub, 2006). The use of these threatened miscarriage forums to challenge the information and advice received from health professionals may have the potential to influence the way women view and interact with their health care professionals. Due to the nature of online discussion, it is not possible to adequately assess if and how the information and advice on the threatened miscarriage forums was perceived and used. Although no actions were recommended that would be perceived as physically harmful to a pregnancy, it is a possible that there may have been emotional repercussions arising from these postings that require further discussion with a health professional in order to prevent misunderstandings. For example, if women perceived that their health provider was providing inadequate care, or grieved for the loss of a vanishing twin when this was not the case. Although health professionals express concerns about offering ‘false hope’ (Grobman et al., 2010; Roscigno et al., 2012), Roscigno et al. (2012) suggest that it is possible to have both a realistic understanding of a poor prognosis and maintain hope through balancing negative prognostic information with the possibility of hope. Their findings report that patient0 s value practitioners who balance their delivery of medical information with hope and that this provides increased feelings of trust in health professionals with a greater willingness to accept or follow medical advice. It may be that this approach of offering the possibility of hope would be beneficial for women presenting with threatened miscarriage. Strengths and limitations This study utilised technology in the form of an Internet search engine (Google) to gather data that would have not otherwise been available in order to fully explore the research question. However, the use of online forums to collect data has limitations. Of concern for quality assurance is the authenticity of the data collected. There is also the potential bias from a non-represented sample and a self-selecting population. Although theoretically open to any member of the public, those participating required basic computer skills, access to a private or public Internet connection and an appropriate level of English literacy, which may have limited access. Possible selection bias may have also been present because only open-access forums were used.
Different experiences, information and opinions may be expressed in discussion groups that require members to join and use a password before postings can be made or read. However, despite these limitations, the use of Internet discussion groups provides a window of opportunity to examine how women experience threatened miscarriage; a real time perspective that may differ from direct questioning through surveys, interviews or focus groups
Conclusion Hope and support was actively sought after and valued by women on Internet discussion threads for threatened miscarriage. This seeking of hope is acknowledged as a possible reaction to the threat of early pregnancy loss and may provide beneficial therapeutic effects. Health practitioners may need education that helps them balance their delivery of medical information with hope in order to increase feelings of trust. Within online forums hope was sought through the positive stories and experiences of others including those of a successful pregnancy following pregnancy loss. Hope was also provided through the experiences and advice of others who challenged the medical information and advice women had been given and hope through being able to engage in self-care activities. With women seeing the Internet as a useful form of support, it may be relevant for practitioners to consider recommending relevant Internet sites. As women challenged medical care and presented inaccurate medical information as facts within these forums, practitioners may also find it useful to initiate a discussion with women about their use of the Internet to discuss any questions and misunderstandings that may arise about the care they are receiving.
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Midwifery journal homepage: www.elsevier.com/midw
A search for hope and understanding: An analysis of threatened miscarriage internet forums Debra Betts, RN, BHSc (Acupuncture) (PhD candidate)a,n, Dr Hannah G. Dahlen, RN, RM, BN (Hons 1st), M (CommN), PhD (Professor of Midwifery)b, Dr Caroline A. Smith, LicAc, BSc (Hons), MSc, PhD (Professor)a a b
Centre for Complementary Medicine Research, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia School of Nursing and Midwifery, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia
art ic l e i nf o
a b s t r a c t
Article history: Received 21 August 2013 Received in revised form 15 December 2013 Accepted 16 December 2013
Objective: threatened miscarriage is a common complication of early pregnancy, which increases the risk of miscarriage or pregnancy complications such as premature birth. Currently there is limited evidence to recommend beneficial medical treatments or lifestyle changes, resulting in a ‘watchful waiting’ approach. The aim of this study was to describe women0 s experiences of threatened miscarriage through examining postings to Internet discussion forums. Design: a Goggle alert for threatened miscarriage was created with emails containing hyperlinks sent to the first author and collected over a seven month period (April to November 2011). Data was analysed using thematic analysis. Findings: one hundred and twenty one discussion threads were collected. The overarching theme that emerged was one of ‘a search for hope and understanding’. Within this there were four sub themes that illustrated this search. ‘A reason for hope: stories and real life experiences’ illustrated how women sought hope for a viable pregnancy through others. ‘Becoming the expert,’ captures how women gave advice from their own experiences. ‘A safe place to share’ and ‘connecting to empathic support’ illustrates how women used this medium for long distance support. Key conclusion: internet discussion forums were used by women to seek hope and support they were not receiving from their health professionals. Women urged each other to remain hopeful despite a negative medical prognosis. There was an acceptance of a lay expertise within the forums that was valid enough to challenge medical expertise. Implications for practice: health practitioners may need education that helps them balance their delivery of medical information with hope in order to increase feelings of trust. With women seeing the Internet as a useful form of support, it may be relevant for practitioners to consider recommending relevant Internet sites and discuss this with women. & 2014 Elsevier Ltd. All rights reserved.
Keywords: Threatened miscarriage Pregnancy loss Internet forums Thematic analysis
Introduction Threatened miscarriage involves a history of vaginal bleeding, with or without abdominal pain, a cervical os that remains closed and a presumed viable pregnancy (Swer and Jurkavic, 2011). This is a common complication of early pregnancy, with an estimated 20% of pregnant women experiencing this in the first 12 weeks of their pregnancy (Everett, 1997). Although the risk for miscarriage is reduced following confirmation of cardiac activity on ultrasound, women with light vaginal bleeding have twice the rate of n Correspondence to: Centre for Complementary Medicine Research, University of Western Sydney, Locked Bag 1797, Penrith South, NSW 2751, Australia. E-mail addresses: [email protected] (D. Betts), [email protected] (H.G. Dahlen), [email protected] (C.A. Smith).
miscarriage when compared to pregnancies with no vaginal bleeding, and four times the risk with heavy vaginal bleeding (Weiss et al., 2004). These pregnancies are also associated with events such as antepartum haemorrhage, and premature childbirth (van Oppenraaij et al., 2009; Saraswat et al., 2010). The evidence to date fails to support the use of medications or lifestyle interventions to improve birthing outcomes (Aleman et al., 2005; Empson et al., 2005; Devaseelan et al., 2010; Wahabi et al., 2011), resulting in a ‘watching waiting’ approach with medical monitoring. Although providing emotional support for these women is mentioned within midwifery and nursing literature, no recommendations are given as to what this advice or support may consist of (Tien and Tan, 2007; Webster-Bain, 2011). While emotional issues have been explored within the literature around women0 s experience of miscarriage (Beutel et al., 1996;
0266-6138/$ - see front matter & 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.midw.2013.12.011
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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Geller et al., 2004; Lok and Neugebauer, 2007; Brier, 2008; Mann et al., 2008), the care they receive from health professionals (Evans et al., 2002; Rowlands and Lee, 2010), and support received through miscarriage Internet forums (Gold et al., 2012), they remain unexplored for threatened miscarriage. Although a qualitative study did identify this knowledge gap and aimed to explore the experiences of women presenting for early pregnancy problems (Warner et al., 2012), the majority of women had experienced pregnancy loss at the time of their interviews. This resulted in pregnancy loss reported in all the themes. It may be that women with a viable pregnancy have different experiences and interactions with health professionals. It may also be that there are important emotional considerations for women presenting with threatened miscarriage that have not been adequately identified by health professionals. Social media may be a valuable source of information for health researchers, offering flexibility in terms of time, access to a population not limited by geography, and anonymity which may offer different insights compared to traditional face-to-face encounters (Eastham, 2011; Chen, 2012). Data can be collected from official medical, media and governmental sites, as well as more informal personal blogs and discussion forums. Personal blogs are set up by authors for self-expression, and have been compared to online versions of diary-keeping or letter-writing (Friedman and Calixte, 2009). Discussion forums differ in that they can be seen as a written ‘real-time’ conversation discussing a specific topic of interest. As such, these responses offer researchers different insights from personal blogs and face to face encounters. Theoretically these forums may be similar to non-participant observation but present unique challenges due to a use of a text medium and the lack of face to face interaction (Bradley and Carter, 2012). There are also challenges relating to consent, privacy and identification verification that are problematic, requiring further debate and ethical guidance to develop the Internet as a credible medium for data collection ( Holmes, 2009; Bradley and Carter, 2012). Online discussion forums are free to access and easy to locate through Internet search engines such as ‘Google’. Whereas some discussion forums are structured so that people join as members and carry out private conversations, many are open for public discussion and viewing. Whereas entering the terms ‘threatened miscarriage’ into a Google search engine demonstrates multiple discussion forums actively receiving postings, to date how women and their partners use these forums has not been examined within nursing, midwifery or medical literature. The aim of this study was to describe women0 s experiences of threatened miscarriage through examining postings to Internet discussion forums.
containing hyperlinks corresponding to the search terms specified. These alerts were viewed by the first author, and those relating threatened miscarriage forums were stored in a word document for further analysis. The creation of these word documents followed the initial thread posting and ranged from a single reply to several A4 pages. Quotes were de-identified by using the first two letters of the pseudonym supplied, followed by a number created for each of the discussion threads, and then by the page number for that discussion thread. Thus a comment made by ‘worried mumma’ collected as the third discussion thread where the comment occurred on the second page of data is represented as (WM/3/2). Data analysis Thematic analysis was used to formally analyse and code the data. Thematic analysis was used because it unearths patterns in the data, allowing for the discovery of the true meaning of the data (Boyatzis, 1998; Grbich, 2007). Although thematic analysis is not always acknowledged as a specific method of qualitative analysis, it is a technique widely used as foundation within qualitative analysis (Braun and Clarke, 2006). Indeed Braun and Clarke (2006, p. 80) argue that ‘a lot of analysis is essentially thematic but is either claimed as something else or not identified as any particular method at all.’ Six phases to performing thematic analysis have been identified by Braun and Clarke (2006) and these were used as a guide as outlined in Table 1. Seventy-two initial threads were collected over a four-month period (22 April 2011 to 21 August 2011) with these ranging from a few sentences to six A4 pages of data. Following initial coding and analysis for initial themes, data collection continued for another three months, to ensure that saturation had been reached with no new themes identified. A total of 121 threads were collected. Determining saturation can be complex, and whereas the concept of saturation is often described in literature as the point at which no new information or themes are observed in the data, practical guidelines for determining sample size are virtually nonexistent (Guest et al., 2006). For this data collection, saturation was defined as ‘the point in data collection and analysis when new information produces little or no change to the codebook’ (Guest et al., 2006, p. 65). To reduce possible researcher bias Nvivo 9 was used to record coding, this allowed coding categories to be sent to the second and third author for comparison and verification. In addition when searching for, reviewing and defining themes a content comparison process was used to provide critical feedback and reflection amongst three authors. Ethical considerations
Methods A qualitative study was undertaken, using internet discussion forum posts as the source of data for this study. A qualitative method was seen as most appropriate as it is ideal when seeking to collect and analyse data where little knowledge is available as it seeks to answer ‘what’ questions. Over a seven month period, from April to November 2011, Internet forum discussions were received by the first author. An Internet alert from the search engine Google was created through using the Google search engine; a free service where alerts are posted directly to an email address. To create this alert the Google Alert home page was accessed and the search terms ‘threatened miscarriage’ and ‘threatened abortion’ entered. The information type selected was for ‘everything’, delivery frequency as ‘daily’ with the option of receiving ‘all results’. The contact email address given as belonging to the first author. Daily emails were received
Ethical principles concerning informed consent, participant confidentiality and privacy arise when using online data collection (Kralik et al., 2005). Although within discussion forums deidentifying data can be used for confidentiality and privacy, it has been cautioned that within small online communities comments may be easily identified through a Google search and therefore participants should be approached for consent (Eysenbach and Till, 2001). However, within larger online discussion forums people may only comment once or intermittently, making direct contact with participants difficult. It has been argued that although ethical approval is required for data posted as private conversations, this is not considered a requirement for data that is publically posted (Eastham, 2011). The approach for this study mirrors studies where ethical approval was seen as unnecessary when accessing public internet postings (Dahlen and Homer, 2011, 2012) Participants within this study were aware they
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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Table 1 Six phases used for thematic analysis. Familiarisation with the data Generating initial codes Searching for themes Reviewing themes Defining and naming themes Producing the report
Data was read and re-read before being entered into the computer program Nvivo 9 as a word document. Nvivo 9 was used to create codes for interesting features of the data. Codes created and the selected data of interest placed in each code. Codes were grouped into potential themes through creating charts within Word documents. Initial themes were checked with previous coding and the word documents through a comparison process undertaken with researchers (CS and HD). On-going analysis undertaken, refining the specifics of each theme and generating clear definitions and names for each theme. Final analysis through writing a report. This involved selecting vivid compelling examples from the data and relating these examples in relationship to the research question and literature.
were posting on a forum with public access. To ensure participants did not have expectations of restricted public access, data collection was only undertaken with ‘implied consent’ from forums that required no password or forum membership (Bradley and Carter, 2012). Findings A total of 121 online forum postings were collected. Although the postings were usually made by women, there were two initial postings made by men whose partners had received a threatened miscarriage diagnosis. The main theme that emerged was one of ‘a search for hope and understanding.’ Within this there were four sub themes that illustrated this search, ‘a reason for hope: stories and real life experiences’, ‘becoming the expert,’ ‘a safe place to share’ and ‘connecting to empathic support’. A search for hope and understanding This main theme captures how women experiencing threatened miscarriage were seeking hope for a positive pregnancy outcome and the understanding of others who had experienced a similar situation ‘please anyone give me your stories if u had one like mine and your baby was healthy’ (E/73/1). This desire for hope was expressed overtly by those asking for positive stories and experiences and through reply postings urging women to remain hopeful, that until there is definite proof that they are miscarrying, no matter what the medical prognosis, they are still pregnant. The search for understanding was woven throughout the postings, with women seeking out others in similar circumstances and the replies providing support. Women discussed with each other how they had coped using nonjudgmental postings to express concern. This search for hope and understanding is captured in the following subthemes. A reason for hope: stories and lived experiences A forum posting typically commenced with details of a bleeding episode where a health professional had given a woman the diagnosis of threatened miscarriage. The overwhelming nature of these postings were asking if others in similar circumstances had gone on to have a successful pregnancy. Although a direct appeal was made for positive stories, real life experiences were also deliberately sought and viewed as having a credibility that was unavailable through Internet information sites or their health care professionals: I am trying to get other people0 s experience on these issues because I just want to know more information and I already googled all I can. I am not asking for medical advice because I am already talking with my OBGYN I just want your experiences (T/2/1).
Although it was not always possible to gather a detailed picture for the precise circumstances of all postings, it was evident that for some this search for hope was in the face of medical caution to prepare for a potential miscarriage: The midwife basically told me that the baby is unlikely to survive as there is too much blood and to expect a miscarriage, so I0 m here at home waiting, I0 m still bleeding but haven0 t passed anything, has this happened to anyone and they have gone on to have a successful pregnancy? (M/25/1). A reason for hope was typically given within the postings through women sharing their experiences of how they continued with a healthy pregnancy. Further reasons for hope were provided through the stories of women who had viable pregnancies after being told that they had miscarried. These were discussed as triumphs in the face of medical advice that there was no hope and the postings clearly challenged medical expertise: I had bleeding at 5, 8 and 10 weeks of varying levels. Each time I was told a miscarriage was inevitable and on one case was told to go to the hospital to get some medication to finish the miscarriage off. Well good thing I didn0 t as my ‘miscarriage’ is now 2! (HM/92/3). The medical terminology used in these postings assumed an expertise in both interpreting and understanding medical diagnostic information and the right for women to dispute that the diagnosis they had been given was correct: Told my HGC levels were only at 460 and needed to be in the 10,0000 s. They said my ultrasound showed NOTHING in my uterus. So I had ‘miscarried.’ I never miscarried. Now I0 m almost 30 wks pregnant. So in a nutshell get a second opinion. Doctors don0 t always know everything (NB/111/2). As well as these stories of continuing and ‘miracle’ pregnancies, hope was also offered for future successful pregnancies. These stories were told with an understanding of what it meant to experience miscarriage. However, these stories were less common than the ‘miracles’ or the ‘against all odds experiences’ put forward: I0 m so sorry. This happened to me and I was devastated but if I hadn0 t of lost that bean I wouldn0 t now be pregnant with this baby boy, who I love so much already. For me it was just meant to be (BF179/12/1). Becoming the expert This sub theme captures how women sought out and gave each other what can only be seen as medical diagnostic information online. A clear challenge to medical authority was evident in both those posting and responding, with some women actively
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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requesting specific advice relating to medication, further medical treatment or diagnostic tests they should be seeking. There was an acceptance of a credible expertise amongst those giving advice through having experienced threatened miscarriage. This advice included reassurance about diagnostic procedures, explaining medical terms and the likely cause of bleeding as well as making a prognosis from the information posted: Some women have a sub-chorionic bleed. It0 s nothing major usually just a tear in the lining causing bleeding (M13/22/2). Spotting is also very normal at almost any point in pregnancy. As long as it does not turn into a ‘period’ type bleed then you are OK (PG2/ 65/2). At times this advice was given with an authority that actively dismissed the medical information the woman had received: Really?? he said it could be a complete miscarriage?? That0 s ridiculous because a small amount of bleeding as you0 ve described with I0 m assuming not much pain if any? That0 s all normal!! You know what honey the more I think about it, the more I believe you0 re fine!! Honestly if you were in a lot more pain with a lot more blood then yeah I0 d say be worried but seriously these doc0 s should know what normal pregnancy symptoms are (LA/86/2). Women also suggested changes to lifestyle that might assist in preventing miscarriage, giving women hope and that there were diet and lifestyle activities that would make a difference. This was presented as experience based knowledge to counter the medical advice that there was nothing that women could actively do except wait and see: Actually there are many ways to prevent a miscarriage…first you need to eat a lot of healthy foods, cut back on the chips and drink a lot of fluids and drink light soda, do not take a extremely hot shower yes they are lovely but that is a no no……and a miscarriage may happen but if you eat right get enough sleep and take prenatal vitamins for 6 months you will be fine (K/95/2). Examples of how women had diagnosed themselves with something other than a threatened miscarriage were also used to provide women with hope. It was implied that if bleeding was related to another cause; such as cervical polyps, a sub-chorionic haematoma or a vanishing twin, pregnancy outcomes would be more positive. Once again this is presented from the perspective of personal experiences being a powerful contradiction to the information women have been given by their medical practitioners: I was labelled with a threatened miscarriage two times but I didn0 t believe it. I was just bleeding with no cramping at all. I did some research and found some information on Cervical Polyps and for sure that0 s what I had. (HH/11/2) Other postings discussed treatments for threatened miscarriage, such as progesterone supplementation and how it was possible to prevent miscarriage through accessing this care. There was a sense in these postings that if women had not been offered this treatment, it was due to a deficiency in the medical care they had received. There was a clear sense that it was not acceptable to ‘do nothing’: What was your doctor0 s response after u mentioned progesterone? It0 s so frustrating with times like this when they say, ‘it0 s no one0 s fault’ or ‘there0 s nothing that can prevent it!’ There is something that can be done and you should demand it. Don0 t worry about pissing anyone off at the doc0 s office. I would be on the phone with them as soon as they open (BC/63/1).
A safe place to share For many women the Internet was seen as being a safe place to share their thoughts and feelings with others who would be accepting. This included how difficult they were finding it to feel excited about being pregnant. ‘I don0 t know how to feel anymore. I0 m afraid to be happy to find out in a few weeks that my LO [Little One] has passed’ (SC/48/1). Women also expressed concerns that the stress and anxiety they were feeling would negatively impact on this pregnancy, problems with being on bed rest when they had other children to care for and feelings of guilt that they might somehow be responsible for the bleeding. As well as sharing their concerns, the forum was a place to discuss their partner0 s reactions. The anonymous nature of the Internet and ability to use pseudonyms made this highly public medium also feel private and safe for women. Abbreviations were also used to describe their partners as though this also added to the anonymity. ‘DH [Dear Husband] seems to be fine with everything, acting like I shouldn0 t be worried. I0 m super worried. How can he be so calm’ (J/69/2). For many women the forum was a place to express their dissatisfaction with medical care. This included the care currently being offered and their experiences in the past. Women discussed what they perceived as substandard care and a lack of medical monitoring and how it affected their pregnancy: …the midwife nicked my womb and now I0 m bleeding a lot as a result. I0 m now worried about baby as they only checked heartbeat on doppler but I have a doppler and so knew the hb [heart beat] was there. I wanted a scan for reassurance… (T/ 74/1) The language and manner by some health professionals was also perceived as insensitive ‘dr. said I will probably pass my baby in the toilet (how sympathetic!)’ (MH2/21/1). The behaviour of some health practitioners was also seen as lacking respect for a woman0 s ability to understand what was happening: …the rudeness of professionals these days are bit much. No bedside manner or respect. Like they don0 t want to be bothered with questions or because you aren0 t a doc you don0 t know anything (M/35/2). This perception that the forum was a safe place to share a range of feelings without receiving criticism remained true so long as women obeyed the forum protocols. An exception to this was an instance when a woman received criticism after posting a photo of bleeding in her underwear: People don0 t want to see your bloody panties, simple as that. There was no paragraph leading up to the picture, no warning, no nothing. It0 s gross… What feedback & advice do you smurfing want? Oh no your undies don0 t look like they have blood on them and you0 re not miscarrying?? (BF/18/6). A connection to empathic support Internet forums provided the opportunity for women to receive long distance support and empathic advice from those who understood their experiences. The focus of these postings was in providing an emphatic response through positive thoughts and prayers, advice about self-care and raising concerns about seeking further medical advice. For many of those posting it was important that others were sending them positive thoughts and prayers with specific requests made for this support: If you pray could you pleeeeeease say a quick prayer for me and LO [little one] or if you don0 t send good vibes or positive thoughts my way…I really really want this baby more than anything and any t&p [thoughts and prayers] from whoever can spare them would make me feel a little better (CT/81/1).
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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This long distance ‘thought support’ was viewed as helpful with numerous messages referring to positive thoughts and prayers being sent to those making the initial posting. Although some were directly religious, referring specifically to God and prayers, the majority referred to general good wishes with concepts such as ‘sticky babies’ and ‘sticky dust’. These references to the medical terminology for implantation and viability dominated the forums as women reframed medical terms into language they could relate to: I0 m sending you good thoughts that this baby sticks and that what you are facing is just a small speed bump in this pregnancy. We are here for you (K/70/2). The advice given within these forum postings contained practical physical and emotional actions that women could take, with an emphasis on providing personal experiences. There was an emphasis on taking all action possible with an understanding of how difficult this could be. Specific efforts were made to moderate any advice to accommodate women in difficult circumstances, such as those caring for other children. The advice women gave each other included resting as much as possible, to stop having sex, to drink plenty of water and purchase a Doppler so they could listen to the heart beat for extra reassurance. Emotional advice included honouring this pregnancy and accepting that you may not be able to control the eventual outcome. Although the majority of postings involved positive stories, there were postings that warned women pregnancy loss was a possibility. Postings that mentioned pregnancy loss in a factual way, without a personal or empathic connection, were scarce and usually ignored. The overwhelming majority were posted with empathy discussing the reality of pregnancy loss with a background of personal experience and empathy. They inevitably held a glimmer of hope: I know how terrifying that can be. Sadly this early it0 s really tough to say. I had a threatened miscarriage ….the doctor said there was a 50/50 chance it would sort itself out, unfortunately I lost my little one. This time around I had the same spotting and was terrified the same thing was happening … only time will tell how things will turn out. (LB/1/1). Although the majority of the interactions questioned medical authority and knowledge, some women expressed their concern that women should seek further medical attention. This advice was again based on past experience and given with great empathy. Even when the outcome being described in the post was adverse it was done in a way that still balanced some hope with reality and caution: I feel I need to tell my story here as I really think you should go to the Hospital hun. I didn0 t know I was pregnant until I started getting a niggle in my right side…2 days later I woke with a severe pain in my right side – I was rushed into surgery an hour later where they removed my right tube. The recovery wasn0 t nice emotionally or physically. I0 m not telling you this to scare you, I0 m telling you this so that you don0 t go through what I did… I0 m only telling you this as a precaution and I really do wish you the best and that you are just too early on to see bubba. (T/104/3).
Discussion The overarching theme in this study was one of searching for hope and understanding when experiencing threatened miscarriage. Hope has been described as a human response associated with a beneficial therapeutic value for those coping with stressful life experiences (Stephenson, 1991; Kylmä and Vehviläinen-
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Julkunen, 1997; Valle et al., 2006; Folkman, 2010). Existing theories of hope involve theological, philosophical and theoretical concepts (Herth and Cutcliffe, 2002a). From six definitions in health care literature Herth and Cutcliffe (2002a) identified three shared key elements: that hope was dynamic, future oriented and an individualised experience. Beneficial consequences of hope have also been identified. These include the ability to cope with stressful stimuli (Benzein and Saveman, 1998), providing a time of protection or buffering when adapting to an stressful event (Valle et al., 2006), as well feelings of empowerment that can assist self-care (Benzein and Saveman, 1998). In midwifery and nursing literature, hope is discussed as providing holistic care – as an important coping strategy with beneficial effects to reduce stressful experiences for patients and their families (Stephenson, 1991; Kylmä and VehviläinenJulkunen, 1997; Amendolia, 2010) with discussions on hope for speciality areas of practice (Cutcliffe and Herth, 2002a, 2002b; Herth and Cutcliffe, 2002a, 2002b, 2002c). However, the specifics of how hope is provided, enhanced or maintained by practitioners is an area in which many questions remain unanswered (Herth and Cutcliffe, 2002a). When there is the possibility of early pregnancy loss, hope for an ongoing pregnancy versus the loss of this hope has been identified as a part of women0 s experiences (Wojnar et al., 2011). It was evident that women posting in the threatened miscarriage forums were pregnant at the time of their initial posting and were specifically seeking hope for a continuing healthy pregnancy from those with similar experiences. The use of discussion forums as an online space to seek hope and support is also a finding for women with postnatal depression (Evans et al., 2012). However, what was noticeable within the findings from the threatened miscarriage Internet forums was that for some women this hope involved not only the positive stories of others but also challenged medical authority. This challenge was evident in the postings suggesting that the diagnosis and information women had been given by their health professionals was incorrect or that there was beneficial treatment that they had not yet been offered. The ‘against all odds’ and ‘miracle stories’ offered by women to give others hope were usually presented as mistakes and errors by the western health practitioners involved. These stories suggested that advice to proceed with medical or surgical management could not always be trusted and urged woman to remain hopeful and to seek another opinion. This advice reflects the reporting that can be found within public media with newspaper articles and websites reporting cases of miscarriage misdiagnosis (Corderoy, 2012; Cari, 2013). Although medical literature in early pregnancy focuses on the need for more accurate diagnostic information in order to reduce stressful waiting for women with a probable miscarriage (Adam et al., 2011; Bottomley et al., 2013), women appeared to welcome diagnostic uncertainty. It may be that discussing diagnostic uncertainty is beneficial for women through acknowledging the possibility for hope, while minimising the potential for medical misdiagnosis for practitioners. It has been suggested that hope may serve as a protective coping strategy for parents facing preterm childbirth and of neonatal infants (Amendolia, 2010; McKechnie and Pridham, 2012). Women in the threatened miscarriage forums discussed how they valued the experiences of others and found receiving positive thoughts supportive, even when posting about a subsequent pregnancy loss. It is possible that discussion forums, provided women and their partner0 s with beneficial support even when the pregnancy outcome was a miscarriage, but further research is needed to explore this. In addition to providing hope, altruism and catharsis have been demonstrated as important emotional benefits available through online support (Vilhauer, 2009). It is possible that participating
Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i
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in these threatened miscarriage forums provided women with enhanced self-esteem through being able to give advice to others and was beneficial through allowing women to express their feelings of anxiety and any frustrations with the medical care they received. A further finding of the postings was that women sought hope through finding an alternative diagnosis to that of threatened miscarriage. This was expressed as advice that minimal, light red bleeding and light abdominal cramping were normal in early pregnancy, or that their symptoms may be the result of another pregnancy problem. It was also expressed that medications such as progesterone could be offered as a treatment. This ‘expert lay opinion’ remained unchallenged despite at times being clearly inaccurate. The majority of participants also challenged medical advice that ‘there was nothing they could do.’ Personal empowerment has also been identified as a beneficial outcome of hope, with hope involving a process of setting future oriented goals, engaging in hopeful behaviour and relating to feelings of control (Stephenson, 1991; Farran et al., 1992). These aspects of hope were present for women posting on the forum with women expressing how beneficial it was to have access to relevant self-care advice as they attempted to remain positive. The potential for online information to lead to misunderstandings and miscommunications and affect the therapeutic relationship between practitioners and their patients has been raised as a potential concern (Taub, 2006). The use of these threatened miscarriage forums to challenge the information and advice received from health professionals may have the potential to influence the way women view and interact with their health care professionals. Due to the nature of online discussion, it is not possible to adequately assess if and how the information and advice on the threatened miscarriage forums was perceived and used. Although no actions were recommended that would be perceived as physically harmful to a pregnancy, it is a possible that there may have been emotional repercussions arising from these postings that require further discussion with a health professional in order to prevent misunderstandings. For example, if women perceived that their health provider was providing inadequate care, or grieved for the loss of a vanishing twin when this was not the case. Although health professionals express concerns about offering ‘false hope’ (Grobman et al., 2010; Roscigno et al., 2012), Roscigno et al. (2012) suggest that it is possible to have both a realistic understanding of a poor prognosis and maintain hope through balancing negative prognostic information with the possibility of hope. Their findings report that patient0 s value practitioners who balance their delivery of medical information with hope and that this provides increased feelings of trust in health professionals with a greater willingness to accept or follow medical advice. It may be that this approach of offering the possibility of hope would be beneficial for women presenting with threatened miscarriage. Strengths and limitations This study utilised technology in the form of an Internet search engine (Google) to gather data that would have not otherwise been available in order to fully explore the research question. However, the use of online forums to collect data has limitations. Of concern for quality assurance is the authenticity of the data collected. There is also the potential bias from a non-represented sample and a self-selecting population. Although theoretically open to any member of the public, those participating required basic computer skills, access to a private or public Internet connection and an appropriate level of English literacy, which may have limited access. Possible selection bias may have also been present because only open-access forums were used.
Different experiences, information and opinions may be expressed in discussion groups that require members to join and use a password before postings can be made or read. However, despite these limitations, the use of Internet discussion groups provides a window of opportunity to examine how women experience threatened miscarriage; a real time perspective that may differ from direct questioning through surveys, interviews or focus groups
Conclusion Hope and support was actively sought after and valued by women on Internet discussion threads for threatened miscarriage. This seeking of hope is acknowledged as a possible reaction to the threat of early pregnancy loss and may provide beneficial therapeutic effects. Health practitioners may need education that helps them balance their delivery of medical information with hope in order to increase feelings of trust. Within online forums hope was sought through the positive stories and experiences of others including those of a successful pregnancy following pregnancy loss. Hope was also provided through the experiences and advice of others who challenged the medical information and advice women had been given and hope through being able to engage in self-care activities. With women seeing the Internet as a useful form of support, it may be relevant for practitioners to consider recommending relevant Internet sites. As women challenged medical care and presented inaccurate medical information as facts within these forums, practitioners may also find it useful to initiate a discussion with women about their use of the Internet to discuss any questions and misunderstandings that may arise about the care they are receiving.
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Please cite this article as: Betts, D., et al., A search for hope and understanding: An analysis of threatened miscarriage internet forums. Midwifery (2014), http://dx.doi.org/10.1016/j.midw.2013.12.011i