‘I had to Educate Myself’: A thematic analysis of online stillbirth stories to improve obstetric care

To examine which met and unmet needs are discussed in stillbirth stories shared on YouTube with the aim to improve obstetric care.


| I N TRODUC TION
Birth stories empower women and other childbearing individuals to transform from a pregnant individual into a parent. 1 Telling these stories helps to organise memories and integrate feelings into an experience that makes sense. 2 Birth stories are extremely popular on audiovisual platforms such as YouTube, with more than 11 million so-called 'birth vlogs' on this platform.However, the worst stories often remain untold: The birth stories that centre around the loss of a child.
Stillbirth, or death of a baby in utero after 20-28 weeks of gestation (the definition of fetal viability varies between countries; the Centers for Disease Control and Prevention define stillbirth as fetal death occurring after 20 weeks of gestation, 3 whereas the World Health Organization defines this as fetal death occurring after 28 weeks of gestation 4 ), is both common and traumatic.8][9] Stillbirth can have substantial negative psychological consequences, such as depression and post-traumatic stress disorder. 10One way to reduce this negative psychological impact is to create and share memories of the baby. 11Sharing traumatic birth storiesthough usually studied in the context of a traumatic live birth -can be healing and transform the trauma into a more positive experience. 17Although many bereaved parents can engage in the memory-making process, [11][12][13][14] sharing these memories is often more difficult because of the stigma that surrounds stillbirth. 15,16owever, if the stories are shared publicly online, they can also provide researchers with insight into how women experience giving birth to their stillborn babies.These women are intentionally or unintentionally advocating for their own obstetric care.Even if they are not sharing their birth stories with the intention of calling out bad practices, online birth stories may contain valuable information on how to improve the childbirth experience.
In particular, birth stories are not objective minuteby-minute retellings of what happened, but a subjective meaning-giving to a lived experience. 2 The elements of the experience that make their way into the narrative are likely to be those that captured the bereaved parent's attention at the time of giving birth to their stillborn child, or that are deemed important later when reflecting on the traumatic event.
Therefore, our aim is to examine which met and unmet needs are discussed in stillbirth stories shared on YouTube.

| Sample
We analysed 19 English-language YouTube videos, which the first author (FG) collected in March 2023 using the keywords 'stillbirth story'.These keywords reflect the language used in YouTube testimonials, as these titles often include the words 'my XXX story'.Videos were arranged by relevance (the standard sorting algorithm on YouTube) and the first 100 videos were screened for inclusion.If theoretical saturation was not reached within this first sampling, we would continue to sample until theoretical saturation was reached.We opted for a large starting sample, because it quickly became clear that many videos did not meet our inclusion criteria.Videos were included if they (1) focused on an intrauterine death after 20 weeks of gestation, (2) were created by one or both parents, (3) were a personal narrative, (4) discussed the birth experience and (5) were in English.Videos were additionally excluded if they were (1) vlogs recorded during the birth, (2) guided interviews, (3) in memoriam tributes or (4) a medical abortion.The selection procedure had three phases: first, FG selected the first 100 videos with the keywords 'stillbirth story', sorted by relevance.Second, she screened the titles and descriptions of each video, to check whether they matched the inclusion criteria.Finally, the videos that were not immediately excluded were watched to ensure that they indeed did match the inclusion criteria.Based on this procedure, we started with our original sample of 100 videos, of which 54 were excluded because it was clear from the description or title that they did not match our criteria, and an additional 27 videos were excluded after watching them, because the content itself was not in line with our inclusion criteria.This resulted in a final sample of 19 videos for analysis.For these 19 videos, the video transcripts were downloaded, after which the first author carefully read them with the video side-by-side to ensure that there were no transcription errors and to add punctuation.

| Analysis
To analyse the data, we conducted a thorough textual reading of the transcripts following Braun and Clarke's 18 guidelines for thematic analysis, whereby recurring codes that emerged from the transcripts were identified and related to form overarching themes.The first author (a health communication scholar without clinical experience) analysed the data and discussed the results with the co-authors (a midwife-researcher and an OB/GYN-researcher, both with clinical experience) to enhance the trustworthiness of the results.Content creators were pseudonymised by using the sex and gestational age of the baby, the two-letter country code and the year that the video was uploaded.

| R E SU LTS
Based on the title and description of the video, 46 of the original 100 videos were selected for further consideration.After watching these videos, 19 were included in the analysis (see Figure 1 for a flowchart with the decision-making process on the inclusion and exclusion of the materials).An overview of the characteristics of the content creators and videos can be found in Table 1.The stillborn babies had a mean gestational age of 33.28 ± 7.16 weeks (± SD).There were slightly more girls in the sample (n = 10) and most mothers were from the USA (n = 12).Half the videos were uploaded within a year after the stillbirth (median = 13 months).Most content creators were active YouTube users, with an average of 112 shared videos (median = 35) and 11 200 followers (median = 525) per profile.The videos were also relatively popular, with an average number of views of 275 768 (median = 16 467) per stillbirth video.
In total, 16 codes were identified, which could be grouped under three major themes.Theoretical saturation was reached after analysing 15 videos, after which no new codes were found (see Figure 2).Although some women actively used their videos to call out shortcomings in their care, most others used their platform for destigmatisation, awareness and support, and rather unintentionally provided insight into their met and unmet needs.

| Choice and decision making
The ability to make choices and decisions in their childbirth process was discussed in 18 of the 19 videos, demonstrating its importance.Although most women did not actively praise their care when they were given the opportunity to make choices, it became clear from the language they used that this was something they valued.Stories in which the women framed the decision-making processes in terms of 'I had to' or 'they told me to' showed more emotional distance and distress, whereas women who framed the decision-making in terms of 'I was asked' or 'they suggested' appeared more positive and showed more agency in their stories.
Several women discussed that they were given the option to be induced immediately, or to go home first to process the news and come back later.Many of them also discussed their decision-making processes regarding pain management.Several women stated that they had originally wished for a 'natural' birth without an epidural, but because the experience was so traumatic, they now 'don't want to feel anything' and would prefer to receive epidural anaesthesia.Now I quickly decided, I had always wanted to have an unmedicated birth and I had quickly decided that I'd no longer wanted that.I was in too much emotional pain, I didn't want to feel an ounce of a physical pain.And so um, I said I'm gonna want an epidural as soon as possible, not yet because I want to be able to feel that I'm having contractions and I and I want to be able to walk around and sit on a medicine ball doing whatever I need to do to help him come down and basically minimise the time that my labour was gonna be, but as soon as I started being too uncomfortable I wanted an epidural. (M38US18) One woman explicitly called out her healthcare providers (HCPs) for ignoring her wishes.The overall tone of her video was angry, and she spent considerable time discussing that she felt hurt because she was treated differently from women birthing a live baby, and that the HCPs 'had just gone ahead and done something which is against my will' and not honoured her wishes: That's what hurts me the most -the fact that we were treated one way because as professionals, they had a procedure.You have two procedures: one procedure if you believe the baby's alive, another procedure if you believe the baby isn't alive, and they, they make the decision.You know, to induce me in that way, I felt like I had no rights.I felt like my baby had no rights.I felt like, we had no chance… (F39UK14) Several women also expressed shock upon discovering that they had no say in the childbirth method.One-third of the women discussed their disappointment to learn that they could not have a caesarean section, although they wanted this.The tone in which this was discussed was often begging and desperate, as they dreaded vaginally birthing a dead child and just wanted the whole experience to be over with.
But even more so I was told like I had to deliver her and c-section which I would have never opted for a c-section you know, in any other situation, but I just, just hearing that that wasn't even an option unless it was considered an emergency, that was rough for me.I'm like and I was thinking of the psychological effects more so than anything else, because I'm like my baby is not alive I'm about to go through all of this pain, I'm about to do everything that we had anticipated on doing this entire time to experience the best day of our lives, only for me to not even hear my baby cry.I did not want to do it.I wanted to just be able to wake up and it just all be over.(F41US20) Finally, it was noted that decision-making and choice were not always easy, as decision-making was impaired by the mental state.Several women described themselves as 'in shock', 'distraught' or 'numb', and discussed how it was hard for them to realise that this was really happening, which resulted in them 'not thinking straight'.Some women mentioned that they 'just did not care at that point' and that the HCPs could 'do whatever'.They no longer seemed to care about their own well-being, or they were unable to process what was happening and give consent.One woman even explicitly discussed that she had to rely on her husband for 'risk management' because she was just agreeing to everything without being able to consider the implications of her choices because she was so overwhelmed with the situation: In conclusion, a first need discussed in YouTube stillbirth stories is the need to be involved in decision-making processes regarding the birthing process, but this can be difficult because of medical guidelines and emotional distress.

| Education and information
Second, about a third of the women discussed their need for more information and education about stillbirth, preferably before they lost their child.Five of the women explicitly mentioned that they themselves were sharing their video to bring awareness of the topic or to educate others.Several women mentioned that they were 'shocked at the statistics' or that they had to educate themselves on the topic.One woman explicitly mentioned that she was 'blindsided' because stillbirth had never been discussed with her and she and another woman stated that they would have liked it if the topic had been discussed during antenatal care.She discusses how it is 'an awful thing to have to think about', but it would have been helpful to include a worst-case scenario in their birth plan 'to make the right decision for us and not to have the regrets which I do now' (M40UK21).
All I remember thinking is I, I was just I had no idea what was going on.I'd never read anything like this, I've never seen anything, I had no prior knowledge about things like this at all, I mean in my mind it just didn't happen it was too horrific.But I wish that I had and I wish that in some of the antenatal classes or my birth plan, I just given like a few minutes of my thought.Oh, you know worst-case scenario for me was a c-section and you know I gave a couple of thoughts maybe to like oh maybe I'll have the drip in my left hand with ECG dots on my back so I could do skin to skin.I didn't think at Theoretical saturation.Note: The videos are sorted by time since stillbirth, similar to Table 1.
all about what it's like to have a dead baby and would you want to see them after they're born, would you want to do a postmortem or not no, would you um want to have a funeral um that's done by the NHS or by the hospital, I mean legally they have to have one.Um and just, I was just so unprepared and so shocked and I wish I had known a little bit more about it, so that I could have made the most in those very special moments because [baby] was gone now.(M40UK21) Another aspect of the need for education and information was a need for clear and continuous communication about what to expect and what was happening in the moment.Half the women in our sample discussed this need for information while they were going through the birth process.Some of the women discussed explicitly asking their HCPs about what to expect or 'what is exactly supposed to happen now' , while others showed relief about things being 'as we were told they would go' .In addition, women spoke positively about their HCPs explaining what was happening to their bodies or why they were making certain decisions, such as the decision to call for help from colleagues when there were further complications.In contrast, when women were not told what was going on or what was happening, they showed confusion and disappointment as they were 'unsure of what was happening' , were 'questioning why [the doctors and midwives] were doing what they're doing' or 'had no idea' of what was going on with their own bodies.
And then it was time for the c-section, so we went back into the room and um you know the staff was absolutely amazing and impeccable.They kept me calm and the anaesthesiologist was amazing, he sat like right there at my head and was just like okay they're cutting like, you know just explaining what's going, the baby will come soon, you may feel this and he was just so sweet. (M38US20) In conclusion, a second need is the need to be well-informed, both before the perinatal loss and during the birthing process.

| Healthcare providers
Many of the women spoke highly and positively about the care they had received.One of the women even described her midwife as 'the light in the darkest moment of my life'.Positive experiences were often described in terms of HCPs being 'very gentle', 'incredible and very caring', and 'just so wonderful'.HCPs who assured the parents that this was not their fault seemed to be especially appreciated.Some of the women also described the importance of relationshipbuilding between nurse/midwife and mother: seeing a midwife who had assisted in an earlier birth was deemed a relief and comfort, and some women appreciated their midwives sharing personal stories about their own perinatal loss or just crying with them.Another aspect that was positively evaluated was when women felt as if their HCP was 'on their side' and advocated for them.Relatedly, women appreciated it when their HCPs showed leadership by guiding them through the process or helping them say and do the correct things.One example is skin-to-skin after birth: although many women described how they immediately wanted to meet and hold their baby, some others were scared to see their child or did not even know that it was an option to do skin-to-skin.When a nurse or midwife insisted that they meet and hold their child, they all showed gratitude for this decision-making.
And bless this nurse, she, so she had told us beforehand that she had delivered stillborn babies before, and so she had kind of like, you know, been through this before, and she comes up to me, and without asking me this time, she just puts him in my arms because she knew that I didn't actually want what I was telling her [NOTE: the woman had previously stated she did not want to see or hold her baby].She knew that I did want to see him, but it was just hard for me to admit it. (M40US18) In contrast, two-thirds of the women described negative experiences with their HCPs.Almost all of these experiences were related to the HCPs' bedside manner or communication style.HCPs' bedside manner ranged from cold or dismissive to insensitive and even outright hostile.HCPs were described as 'quite cold' or 'not the most caring person in the world', they would disappear for hours or even days on end, or women would be 'brushed off' when they tried to explain what they were feeling.They felt as if they were not 'being listened to or taken seriously' and were frustrated by the lack of response from their HCPs, especially when they were first coming into the hospital with an unresponsive baby, right before the stillbirth was diagnosed.Sometimes, these women described being anxious throughout their pregnancy and being dismissed throughout pregnancy as well, resulting in them being unsure of whether they should contact a doctor when they first started experiencing the symptoms of stillbirth (usually a lack of fetal movement).
It was two o'clock in the morning on Sunday night, Monday morning.And I was in active labour.I mean, the labour pains that had me groaning and moaning.I just felt like, okay, it's time.But on the other hand, I was like, maybe we should wait because I'm always in pain and maybe I'll get sent home.Why even go, just wait it out.Wait it out, I was just waiting it out because I would always get sent… sent home.(F38US21) Many HCPs were also described as insensitive or unprofessional in their language and manner.More than one doctor was reported as 'angry' or 'upset' because they had to deliver bad news or because they disagreed with the mothers' decision regarding the induction process.Sometimes this insensitivity resulted in stigmatisation, such as nurses asking mothers 'what I had done days prior and anything that caused me to miscarry' or wanting to check 'if the coast is clear' before moving the baby to the morgue because 'anyone that's just had their baby doesn't want to see a baby that's died being taken down the corridor' (F40UK20).Women described that HCPs 'didn't care about me or my baby because she wasn't alive.'One doctor even outrightly suggested that the parents can just try again for a new baby: The doctors were telling me, 'You're young, you can try again.'Who in their right mind would say that to somebody who is losing their baby, who just lost their baby and it's still laying inside of their body?

| Main findings
This study demonstrates the value of birth stories in research.These ordinary stories told without prompting or guidance can provide unique insight in what is deemed important by the storyteller.Social media provide a unique chance to hear and study individuals who have experienced traumatic events, while reducing participant burden in research, as there is no need to interview and rehash traumatic events with a stranger.Although most content creators in our sample did not actively use their birth stories to advocate for better care, their stories provided notable insight into how we can improve care.
In particular, we identified three major opportunities for improvement, which will be discussed in more detail under 'Interpretation' .In short, parents appreciate the opportunity to make decisions about their care, but are faced with medical and emotional obstacles, parents express a need for more timely information on stillbirth, and HCPs' bedside manner is often lacking, leading to increased stress.

| Strengths and limitations
While online birth stories can be a valuable and cost-effective resource, they lack interactivity, and do not allow follow-up questions.Additional interviews focusing specifically on unmet needs can provide even deeper insight.Second, it is possible that online stillbirth stories are more often shared by parents who are unhappy with their care.This may bias our results to be more negative than what the average parent experiences, and overestimate the need for change.However, except for one, none of the stories in our sample centred around the (lack of) care they had received or the negative experiences they had had.Unmet needs or grievances were woven throughout the stories in snippets, but were rarely the focus, suggesting that these parents may not be unhappier with the care they have received than parents who are not sharing their stillbirth stories online.Finally, because we only examined English-language videos, there was an overrepresentation of US participants.Their experiences may be different from the experiences of women from other countries with different healthcare systems.Comparing our findings with samples from countries with woman-centred maternity health covered by universal health insurance or with samples who have low or no access to quality health care will provide insight into universal and context-specific unmet needs.

| Interpretation
First, being provided with options and being able to make choices are clearly valued, and something that is generally done well.Almost all of the women in our sample described opportunities for agency in their decisions, and only a small minority felt as if this was taken away from them.These women were more likely to actively use their platform to call out their HCPs.Regarding choice and decision-making, there were two things to consider.First, although many women feel as if they have a choice in decisions over pain management or when to start the induction process, they are often disappointed to learn that they have no choice in the childbirth method because they are often refused an elective caesarean section.While caesarean sections can have several short-term and long-term complications, 19 it may be useful for future research to consider whether elective caesarean sections, when used, affect the psychological suffering and trauma of individuals who experience a stillbirth.Second, although many are offered choices and agency in the decision-making processes, they may not always be mentally capable of making informed decisions.The psychological trauma may impair their ability to process information and make informed decisions, potentially leading to regret later.Hence, HCPs should make sure that parents understand what they are consenting to.Involving mental health professionals can potentially help to address emotional challenges and facilitate decision-making.
Second, women need timely and continuous information.Several of the women in our sample used their birth story to educate others on the statistics, because this is information that they felt they had lacked themselves.Silence about the topic of stillbirth has previously been identified as a pervasive form of stigmatisation. 15More open discussion about stillbirth may not only destigmatise the topic, but also lower the mental burden of parents going through this experience.Several of the women in our sample indicated that they had been blindsided and completely unprepared, because stillbirth had never been discussed with them.Some even suggested that the topic be integrated in prenatal education, so difficult decisions can be made beforehand as part of the birth plan.HCPs should consider including more stillbirth education during prenatal care.Providing comprehensive information about stillbirth risk factors, warning signs and preventive measures can empower expectant parents to take proactive steps in their own care and can help to reduce the emotional trauma and regret if stillbirth occurs.Although this type of preparing for the worst can induce anxiety in expectant parents, research on future-oriented thinking and proactive coping mechanisms suggests that this can also be helpful. 20inally, although HCPs showing high emotional intelligence can form a deep, trusting relationship with the parent and be a beacon of hope and comfort in a desperate situation, most of the stories spoke of disappointing and frustrating bedside manner, with HCPs dismissing complaints, being cold and distant, or being insensitive, hostile or stigmatising in their language and behaviour.The importance and benefits of emotional intelligence for patient satisfaction are widely recognised [21][22][23] and emotional intelligence training in education programmes has proven to be effective. 24However, it is unclear to what extent these training programmes are currently integrated in nursing, midwifery and medical training.Based on our results, more attention is needed for emotional intelligence training, as these skills -if they were ever trained -appear to become lost in clinical practice.Healthcare professionals should receive training and education on emotional intelligence, empathy and effective communication skills.Our findings support that working in health care, especially as a nurse or midwife, is not only about physically taking care of patients, but also about human connection and providing emotional care.
Online stillbirth stories can provide insight into how to improve obstetric care after stillbirth.We found that there are three areas of care needing improvement: parental agency in decision-making processes, stillbirth education and HCPs' emotional intelligence.However, many parents also discuss positive experiences, demonstrating the value of good, woman-centred care.

AU T HOR C ON T R I BU T ION S
Femke Geusens acquired the funding, conceived of and designed the study, collected the data, performed the data analysis, wrote the first draft of the paper, revised the paper and supervised the process.Annick Bogaerts provided critical review and revision on the first draft and the revision of the paper.Alkistis Skalkidou helped to refine the research question and provided critical review and revision on the first draft and the revision of the paper.

DATA AVA I L A BI L I T Y S TAT E M E N T
Pseudonymised transcripts are available upon reasonable request from the first author.

E T H IC S A PPROVA L
This study was exempt from ethical approval because of the public nature of the data.

T A B L E 1
An overview of the characteristics of the content creators and videos included in our sample.YouTube no longer shares the exact amount of subscribers when a content creator has over 1000 subscribers.Videos are sorted by time since stillbirth.
AC K NOW L E D GE M E N T SThis project has received funding from the European Union's Horizon Europe research and innovation programme under the Marie Skłodowska-Curie grant agreement No 101063659 (Project PACMUM).We would also like to thank Uppsala University for funding the open access publication of this paper as part of their open access publishing agreement with Wiley.F U N DI NG I N FOR M AT IONData collection and manuscript preparation were supported by the European Union under Femke Geusens' MSCA postdoctoral fellowship (PACMUM-101063659).
was saying 'okay', first of all, to everything, and my husband like 'no, what are the risks with that?Okay so if she does this, what could potentially happen versus if she does this?Oh, how many milligrams is that, why is it such a higher dose than what we're starting off with.' Me, I'm sitting there like 'okay'.(F41US20)