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10.1136/bmjopen-2024-088079
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Original Research
Obstetrics and Gynaecology
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Experiences and needs of Chinese women after a stillbirth: a qualitative phenomenological study
Chen Li 1037029042@qq.com

Qian Qiyu 201415803393@qq.com

Zhu Yan 305137715@qq.com

Zhang Xu 2327708994@qq.com

Zhang Yueming 1zhangyueming@suda.edu.cn

Jiang Feizhou 1jiangfeizhou9966@163.com

Chu Guangping 2249736173@qq.com

Shi Jia 1528901712@qq.com

http://orcid.org/0009-0004-4030-7485
Pu Li 1polly0714@163.com

1 Department of Gynecology and Obstetrics, The Fourth Affiliated Hospital of Soochow University, Suzhou, Jiangsu, China
2 Department of Women’s Health, Suzhou Gusu District Maternal and Child Health Care Institute, Suzhou, Jiangsu, China
3 Center for Health Statistics and Information, National Health Commission of People's Republic of China, Beijing, China
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

None declared.

DrLiPu; polly0714@163.com
LC, QQ and YZ contributed equally.

2024
3 9 2024
14 9 e08807926 4 2024
22 8 2024
Copyright © Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
2024
https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

Abstract

Objectives

We aimed to explore the lived experiences and needs of women after a recent stillbirth event.

Design

Qualitative phenomenological study.

Setting

The current study was conducted in a tertiary obstetric hospital in East China between 25 January 2024 and 29 March 2024.

Participants

14 women having experienced a stillbirth within the last 6 months.

Results

Researchers agreed on four key themes including individual variations in emotional reaction and recovery, physical recovery and concerns about future pregnancies, the critical role of social support systems and variations in perceptions of stillbirth as the death of a fetus versus a human being, along with related mourning rituals. These themes collectively highlight the multifaceted nature of the stillbirth experience, underscoring the complex interplay between personal, cultural and medical factors that shape women’s emotional and physical responses.

Conclusions

Post-stillbirth experiences among Chinese women are deeply individualised and influenced by a complex interplay of personal emotions, cultural contexts and medical interactions. It is imperative for healthcare systems to implement tailored care strategies beyond standard protocols to proactively address their varied emotional landscapes and physical concerns with an enhanced awareness of cultural sensitivities. Specialised training for healthcare providers should be devised to recognise and respond to the unique grief processes. Comprehensive support systems should be established to significantly enhance the recovery journey by providing essential resources and community connections.

QUALITATIVE RESEARCH
China
Mortality
OBSTETRICS
PERINATOLOGY
Applied and Basic Medical Research, Scientific and Technology Development Plan Program of Suzhou City SKYD2023080
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pmcSTRENGTHS AND LIMITATIONS OF THIS STUDY

The study offers a unique qualitative insight into the emotional responses and recovery processes of Chinese women after experiencing a stillbirth, shedding light on deeply personal and culturally influenced experiences.

The findings may inform future quantitative research into this underrepresented population.

The focus on married women from economically developed regions with relatively affluent backgrounds should be considered when interpreting the findings.

Introduction

Stillbirth is defined as the loss of a pregnancy at or after 20 weeks of gestation, with a global incidence of 25 per 1000 births and an estimated 2.6 million cases annually.1 2 It can be a profound event with significant emotional, psychological and societal implications.3 4 Occurrence of stillbirth exhibits notable regional disparities, with higher prevalence in low-income and middle-income countries, where access to quality maternal and fetal healthcare may be limited.5 Despite advancements in healthcare, the global stillbirth remains a significant public health challenge requiring attention.

The aftermath of a stillbirth is characterised by a complex interplay of psychological, emotional and social challenges for the affected women. The psychological impact is profound, with bereaved mothers experiencing intense grief, depression, anxiety and in some cases, post-traumatic stress disorder.2 6 The emotional toll is often compounded by societal expectations and cultural norms surrounding pregnancy and motherhood, which can lead to feelings of isolation, inadequacy and stigmatisation.3

Existing literature has presented the nuanced nature of the grieving process, which can be influenced by a myriad of factors including cultural background, personal beliefs, the circumstances surrounding the stillbirth and the support systems available.710 Studies highlight the importance of acknowledging the grief experienced by these women, advocating for the need to validate their loss and provide empathetic, personalised care.8 10 Through a comprehensive understanding of the psychological, emotional and social dimensions of stillbirth, healthcare providers, policy-makers and support networks can better cater to the needs of bereaved mothers, ensuring they receive the compassionate care and support necessary for their healing journey.

In China, childbirth is not only a biological event but also a culturally and socially significant milestone.11 The traditional Chinese perspective on childbirth is heavily influenced by Confucian values, which emphasise filial piety and the continuation of the family lineage. Consequently, the ability to bear children, particularly sons, is often seen as a fulfilment of a woman’s duty within the family and society.12 This cultural backdrop could intensify the emotional and psychological impact of stillbirth, as the loss transcends personal grief to involve broader social and familial dimensions.

The cultural practices, beliefs and support systems in China surrounding bereavement and child loss are intricate and multifaceted. Traditional beliefs often intermingle with modern perspectives, shaping the way stillbirth is perceived and managed. Moreover, this situation is further complicated by the one-child policy, which was in effect until recently, amplifying the pressure on women to deliver a healthy child and exacerbating the grief associated with child loss.

Despite these challenges, there is a growing awareness in China of the need for comprehensive support systems for women experiencing stillbirth. Initiatives aimed at improving bereavement care, both within healthcare settings and in the community, are beginning to emerge, reflecting a shift towards more compassionate and holistic approaches to child loss. Understanding the cultural, social and familial significance of childbirth and stillbirth in the Chinese context is crucial for providing culturally sensitive care and support, where healthcare providers and support networks can better assist bereaved mothers.

Despite the considerable body of research on stillbirth and its impacts, there seems to be a notable scarcity of studies specifically dedicated to exploring the experiences and needs of Chinese women after a stillbirth event, especially internationally published qualitative reports on women in Mainland China.1315 Therefore, we conducted this study to explore the lived experiences and needs of Chinese women after their recent stillbirth events.

It is worth noting that our choice to focus on stillbirth, rather than perinatal death as many other previous studies, was a strategic decision because stillbirth is distinct from other types of perinatal death, such as miscarriage or neonatal death, in several key aspects, such as stage of pregnancy and expectations, childbearing process and immediate aftermath, medical and social support systems, and long-term psychological impact. By focusing specifically on stillbirth, we may provide more nuanced evidence to better tailor the care for this patient group.

Our work could make a substantial contribution to the relatively unexplored experiences and needs of Chinese women following a stillbirth. The depth and specificity of our findings may enrich the understanding of the grieving process and offer insights into the cultural, emotional and psychological dimensions. By focusing on a demographic that has been under-represented in existing literature, this study fills a crucial gap and broadens the scope of bereavement research.

Our findings may also influence clinical practice, particularly in enhancing the cultural sensitivity of care by informing the development of tailored, compassionate care strategies. Moreover, the insights gained can guide healthcare providers in recognising and addressing the specific support needs of bereaved mothers.

Methods

Study setting

Our study was conducted in Suzhou City, situated in the economically developed Yangtze River Delta region of East China. This area is known for its diverse blend of traditional Chinese culture and modern economic development, coupled with a complex population demographic that includes both native residents and migrant workers. This provides a distinctive context to explore the experiences of women after a stillbirth, benefiting from the city’s advanced healthcare infrastructure and diverse societal influences. However, it is important to note that Suzhou’s relatively higher economic status might limit the generalisability of our findings to less economically developed regions, which possibly obscures the experiences of women in these areas. The current study was conducted between 25 January 2024 and 29 March 2024.

Study design

We employed an established methodological framework for our qualitative phenomenological study, including both purposive and snowball sampling for participant enrolment, face-to-face semistructured interviewing for data collection, the principle of data saturation to determine the point to cease data collection and Colaizzi’s seven-step method for thematic analysis.

Sampling strategy

We implemented a combination of purposive and snowball sampling techniques. Initially, we employed purposive sampling to selectively target women who had received care in our hospital after experiencing a stillbirth event within 6 months before the study. As the study progressed, it became apparent that the initial pool of participants from our hospital was insufficient. Therefore, we adopted snowball sampling to broaden our participant base, leveraging some of our initial participants as conduits to access further potential subjects. We encouraged two of the initial participants, who took part in support groups specifically formed for women who have encountered psychological trauma, to recommend and introduce other women from their support groups.

Participant recruitment

The recruitment of participants for our study was meticulously planned to ensure a comprehensive and ethically sound approach.

Inclusion criteria

Participants were eligible if they were aged between 22 and 45 years; experienced a stillbirth within the last 6 months; possessed sufficient communication capacity for the interview; had no known severe psychological issues that could compromise the study findings or be exacerbated by participation and were willing and capable of providing informed consent.

Exclusion criteria

Participants were excluded if they were aged under 22 or over 45 years; experienced a stillbirth more than 6 months prior to the study; lacked adequate communication abilities; suffered from severe psychological issues such as severe depression, which could hinder their ability to provide reliable information or worsen due to participation; or were unwilling or unable to provide informed consent.

Importantly, considering the psychological nature of the event being researched, participants with mild to moderate psychological symptoms were included. Excluding this demographic would compromise the feasibility and integrity of the study. Interviewers continuously monitored the psychological status of participants during interviews to ensure their well-being was maintained.

Demographic data collection and semistructured interviews

Demographic data for the initial participants, who were patients at our hospital, were obtained from their medical records. For those participants referred to later in the study, demographic information was collected during the interviews.

An interview guide was developed by the research team in collaboration with an expert in qualitative research methodology to ensure consistency while allowing flexibility (online supplemental file 1). The guide included open-ended questions covering topics such as the emotional and psychological impacts of stillbirth, the support systems available and any cultural practices related to bereavement, for participants to share their personal experiences and insights in depth.

Interviews were conducted in a private and comfortable setting, including a preset meeting room in our hospital and locations chosen by participants, to ensure that participants felt safe and secure in sharing their experiences.

The interviews began with open-ended questions to gently introduce the topic, focusing initially on the participants’ overall experiences after the stillbirth. As the sessions progressed, the questions became more detailed, probing into specific areas of their emotional and psychological responses, coping mechanisms, and the support they received. Interviewers used a range of questioning techniques such as probing for depth, reflective listening for emotional resonance, clarification to ensure understanding and follow-up questions to gather more comprehensive data and pausing to give time for reflection and encourage elaboration.

Interviewers also made field notes to capture significant non-verbal cues, including crying, changes in facial expressions, notable pauses and other emotional displays, to enrich the context of participants’ spoken narratives.

Notably, we took specific measures to sensitively accommodate participants’ emotional changes during the interviews, recognising that many of the participants exhibited strong emotional responses when discussing their experiences. This included using such techniques as interviewers maintaining a calm and patient demeanour, adapting the pace of the conversation to match the participant’s emotional needs, pausing the interview when necessary, offering tissues and warm water and providing a comforting presence that affirmed the participant’s feelings without pressing them further than they were comfortable.

When intense emotions were displayed, interviewers offered participants the option to take a break or end the session early if desired. At the conclusion of each interview, participants were debriefed to discuss their emotional state and provided with contacts for psychological support services if appropriate.

Each interview session lasted 40–60 min. All interviews were audio recorded with the participants’ consent and transcribed verbatim within 24 hours. A different researcher verified the transcripts for accuracy.

Thematic analysis

Colaizzi’s seven-step process was employed for thematic analysis of the transcripts. First, all interview transcripts were read and reread by the research team to gain thorough acquaintance with the depth and breadth of the content for developing an initial understanding. Second, we extracted significant statements directly related to the experiences of stillbirth, which provided direct insights into the emotional and psychological landscape of the participants. Third, each significant statement was analysed to derive meanings. We discussed and compared these interpretations before reaching a consensus on the underlying implications. Then the meanings derived were sorted into thematic categories by grouping similar meanings together, organising data into comprehensible segments reflecting the core aspects of the participants’ experiences. After categorising, themes were then integrated and refined to form a comprehensive narrative, which was continuously reviewed and compared against the original data to ensure its truthfulness. Then we developed a detailed description of the themes, with textural and structural elements, to portray and make sense of participants’ experiences. Finally, we member checked our findings by returning them to the participants for validation.

Rigour

In addition to member checking, another important measure for maintaining rigour and trustworthiness of our work was that we performed a comprehensive review of the research team’s backgrounds before initiating the study. Each team member was asked to disclose any significant personal experiences related to childbearing and birth, particularly traumatic events such as stillbirth, abortion and miscarriage. Alongside other reflexivity measures, we carefully considered the potential biases and confounding effects that these personal experiences might introduce.

Notably, we chose not to exclude researchers with such backgrounds from interviewing or other parts of the study as we believed that, with proper reflective practice, these personal experiences could actually enrich the study because researchers who had faced similar challenges could bring enhanced compassion and empathy to interactions with participants and contributed to a deeper and more nuanced analysis and interpretation of the data.

Additionally, we triangulated data and findings using multiple data sources and methods. By comparing information from interviews, demographic data and non-verbal cues observed during interviews, we cross-verified findings to minimise potential bias.

Peer debriefing sessions were conducted throughout the analyses, involving discussions among the research team and with another external qualitative researcher not directly involved in our study to seek objective insights and critiques for refining our analysis and conclusions.

Data confidentiality and privacy protection

Ensuring the confidentiality and privacy of participant data was paramount in our study, given the sensitive nature of the subject matter. We implemented several rigorous measures to safeguard participant information throughout the data collection, analysis and reporting phases.

During data collection, all identifying information was carefully anonymised using an encryption sheet accessible only to the primary investigator (PI, the corresponding author). Interviews were conducted in private settings, either a preset room in our facility or a location of participant’s choice. In the case of the participant’s chosen locations, minor setup rearrangements were made if the interviewers saw fit. All conversations were recorded with the explicit consent of the participants. Prior to recording, participants were reassured that their responses would be confidential and used solely for research purposes and that they could withdraw from the study at any time point without repercussion.

Collected data, including audio recordings and transcripts, were stored on a password-protected flash drive and another hard drive for backup, which were kept, together with the physical copies of documents such as the field notes, in the PI’s safety box and were accessible only to the research team.

Data use was strictly limited to the purposes defined in the consent forms. The sharing of data with the external researcher was conducted under strict conditions to ensure continued anonymity and confidentiality. This included but was not limited to, requiring the external researcher to review the data onsite during discussions, with a clear prohibition against any digital or physical transmission of data beyond our controlled environment.

Patient and public involvement

None.

Results

Participants

We successfully recruited 14 participants, 7 from our hospital’s patient pool using purposive sampling and another 7 through snowball sampling. The participants were between 25 and 42 years old (average age, 34.1 years). Eight were local residents while the remaining six were migrant workers from other cities. All participants were married and had educational levels ranging from senior high school to postgraduate. The majority (10/14) were employed full time, with one working as a freelancer and three as full-time housewives. Annual household incomes varied, with half of the participants earning more than CN¥150 000 and two earning less than CN¥80 000 per year. Their childbearing histories also varied, where two experienced a stillbirth with their first pregnancy and one had previously experienced a stillbirth. The time from the stillbirth event to the interview ranged from 2 to 6 months, averaging 4.1 months. Only three participants indicated plans for childbearing within the next 12 months. (table 1)

Table 1 Sociodemographic and obstetric characteristics of participants (N=14)

Characteristic participant	1	2	3	4	5	6	7	
Age, year	37	35	25	39	27	29	41	
Education*	Postgrad	Undergrad	Undergrad	Senior high	Undergrad	Postgrad	Undergrad	
Employment	Office worker	Office worker	Business owner	Housewife	Freelancer	Public servant	Office worker	
Residency	Local	Local	Local	Migrant	Local	Migrant	Local	
Annual household income, yuan RMB	>CN¥150 000	>CN¥150 000	>CN¥150 000	>CN¥150 000	CN¥80 000–CN¥15 000	>CN¥150 000	CN¥80 000–CN¥150 000	
Childbirth history†	1-0-1-1-1	2-1-1-2-1	0-0-0-0-1	1-0-2-1-1	0-0-2-0-1	1-0-0-1-1	2-0-0-2-1	
Time from event to interview, months	4	5	2	5	6	3	3	
Plan for childbearing within 12 months	No	No	No	No	Yes	No	No	
Characteristic participant	8	9	10	11	12	13	14	
Age, year	25	42	33	38	41	39	27	
Education*	Undergrad	Undergrad	Tech college	Undergrad	Postgrad	Tech college	Undergrad	
Employment	Housewife	Housewife	Business owner	Office worker	Office worker	Nurse	Public servant	
Residency	Local	Migrant	Migrant	Migrant	Local	Migrant	Local	
Annual household income, yuan RMB	<CN¥80 000	>CN¥150 000	>CN¥150 000	CN¥80 000–CN¥15 000	CN¥80 000–CN¥15 000	CN¥80 000–CN¥15 000	<CN¥80 000	
Childbearing history	0-0-1-0-1	0-1-0-1-1	1-0-0-1-1	2-0-1-2-2	0-1-0-1-1	2-0-1-2-1	0-0-0-0-1	
Time from event to interview, months	6	6	5	4	2	2	5	
Plan for childbearing within 12 months	Yes	No	No	No	No	No	Yes	
* Undergrad, undergraduate; tech college, technical college; postgrad, postgraduate.

† fFull-term live birth-preterm birth-miscarriage-current live children-still birth.

Interviews

The duration of the interviews varied significantly, with lengths ranging from 23 to 65 min (average 38.4 min). A majority of the participants (10 out of 14) became emotional and cried during the interviews. For three participants (P5, P7, P13), the interview sessions had to be prematurely concluded as their emotional responses were too intense to continue answering the remaining questions. Two other participants (P3, P8) who also exhibited strong emotional reactions were able to resume and complete their interviews after taking a short break to compose themselves.

Themes

According to our interviews, women’s experiences after stillbirths were highly variable and complex, reflecting the deeply individual and multifaceted nature of their responses. The researchers agreed on four key themes representing the complexity of these experiences.

Theme 1: individual variations in emotional reaction and recovery

Almost all participants exhibited strong emotional reactions to their stillbirths, yet there was considerable variability in the intensity of these reactions and the pace of their recovery. Some participants experienced relatively milder emotional responses and quicker recovery times, particularly those who felt ‘mentally prepared’ for such outcomes to some extent:

The doctor had told us that the baby might not make it to birth, so we were somewhat prepared mentally. It was still very hard when it happened, but I didn't completely break down. It took some time, but I recovered, and later on, I focused on getting my health back to try again. (P3)

I knew when I was pregnant that, being of advanced maternal age, getting pregnant was difficult. During prenatal checks, some problems were detected, but I still wanted to try. The doctor mentioned there was a significant risk of miscarriage, but we insisted on continuing. In the end, it was lost, and it was really hard to accept at that time, but gradually I came to terms with it. (P4)

Of course, it was heartbreaking, and it took a toll on my body, but I was also prepared mentally because the doctor had said there might be a chance we couldn’t save it. We tried to keep it for a few more months, but still couldn't. There’s nothing we could do; maybe it just wasn't meant to be with this child. I grieved for a while, but life has to go on. I have an older child to take care of… I have to work, earn money; there’s not much time to spend on being sad. (P10)

In contrast, some others described profound and enduring sorrow, with some finding themselves unable to move forward without professional psychological support.

It’s heartbreaking. I couldn't get over the loss for a long time. My husband tried to comfort me, but I just couldn't move on, especially when I think about how the baby used to move in my belly… (Cried and was unable to continue talking). (P5)

These past few months have felt like a different lifetime; the pain was so intense, it felt like the sky had fallen. How could this happen? Sometimes even breathing felt difficult. I went for psychological counseling, talked with the doctor, who prescribed some medication. It helped a little, but I still remember and feel terrible sometimes. (P7)

I couldn’t get over it on my own. My family tried to comfort me, telling me to let go, but I couldn’t. So I joined a support group, saw others who had gone through the same, shared with them, listened to the doctor, and it felt a bit better… I saw a psychologist, who prescribed medication and said I was quite depressed. The medication helped somewhat. (P13)

Theme 2: physical recovery and concerns about future pregnancies

The physical impact of stillbirth and the subsequent recovery was repetitively mentioned, which seemed to be interconnected under an overarching theme. Participants discussed the physical toll that pregnancy and stillbirth caused on their bodies and the healing process after. Nearly half of them expressed concerns about their health and future pregnancies, with a sense of uncertainty and fear regarding their reproductive futures:

The stillbirth was a huge blow to my body; I felt fragile for over a month afterward… I worry about whether it will affect my ability to get pregnant smoothly in the future. (P3)

I am already older, and this loss has drained my vitality. Even if I could become pregnant again, I would probably be too scared to try. (P4)

My husband and I have discussed this, and we do want a second child, but this experience has greatly harmed both my body and mind. We've decided to wait for now. (P8)

In the past few months, every time my period is delayed, I get very anxious, fearing that I might be pregnant again. (P10)

Several participants stated that the experience of stillbirth led to a phobia of sexual activity, which became a potential impediment to subsequent pregnancies:

After the loss, I've developed a fear of sexual activity. It’s been almost half a year, and I still can't bring myself to be intimate with my husband, fearful of getting pregnant again. (P7)

Now, whenever my husband mentions intimacy, I worry about possibly getting pregnant again. I fear my body couldn't handle another loss, yet I'm also scared that I might not be able to conceive in the future. Very conflicting. (P14)

Theme 3: importance and demand of social support systems

While a few participants emphasised a preference for autonomy and independence, the majority (9/14) acknowledged the significant, sometimes essential, influence of various levels of social support in their healing journey:

I was okay, and my recovery was fine too. I was able to resume normal life; I just needed to be a bit careful during that period. I didn't particularly need someone to be with me all the time or to take special care of me. (P3)

Notably, the participants’ views on the support received were polarised, with some reporting positive experiences that greatly aided their recovery while others expressed dissatisfaction, highlighting a lack of adequate support during their time of need:

The hardest time for me was the first couple of weeks right after when I couldn't bear it anymore; both my body and mind were in too much pain. I told my husband that I was suffering terribly and felt like it was my fault that we lost the child. He then took leave to be with me, and my parents and my in-laws often came over to see me. Later, when I realized something was wrong, we went to see a psychologist, found out I was depressed, got prescribed medication, and my workplace allowed me to take a longer break. I took almost two months off before I started to get back on my feet. (P1)

During that time, I needed someone with me, firstly to take care of daily life, and secondly, because I really needed companionship right after it happened, I needed someone to talk to… My husband was the main one taking care of me, but he had to work, so we hired a nanny, and later my mother came to stay with us for a month… I called my best friend to talk because there were things I didn’t feel like talking about with my husband or even my mom. (P7)

The most painful part for me was when my husband nonchalantly said, 'It’s gone, so it’s gone.' I will remember that sentence for the rest of my life! After that, he didn't spend much time with me; he said he was busy. Most of the time, it was my parents and the nanny who looked after me. I wasn't asking for much, just a bit more time from him. It really hurt my feelings. I mean, what’s the point? Just after losing our child, when I needed support the most… (Became increasingly emotional and started to cry. Had to pause the interview) (P13)

During interviews, participants mentioned a number of actors in their support systems, from immediate family members such as husbands, parents and in-laws, to broader support networks including relatives, close friends, health professionals and peers in support group.

Subtheme 1: concerns about privacy and stigma when seeking support

A notable aspect of the support systems after stillbirths was some participants’ concerns about privacy and stigma (5/14). These concerns often influenced their willingness to seek and accept help. Participants reported feeling wary of judgement from others and were concerned about how their personal losses and emotional struggles might be perceived within their communities, as “说闲话”(gossiping). The stigma was mainly associated with stillbirth itself and mental health issues especially depression, which seemed to create barriers to seek understanding and support:

When I think about talking to someone, I hesitated. It’s not something you can discuss with just anyone; it’s not a good topic, and I worry about people around me gossiping.

I definitely held back because it was a very private matter. Even now, I wouldn't easily talk about it with outsiders. Back then, when I wanted to talk, it had to be with someone very close and trustworthy. You never know what others might say if it gets out. (P7)

No, there are things I only tell certain people. Except for my husband and my doctor, no one else knew about my depression. I haven't even told my parents because I don't want them to worry. Having depression publicly isn't something good if it gets out. Also if people knew about the stillbirth, they might gossip too much. (13)

Theme 4: variations in perceptions of stillbirth as death of a fetus instead of a human being and related rituals

Participants’ perceptions of stillbirth varied significantly. Some seemed to view it as the loss of a fetus while some others tended to see it as the loss of a child. These perceptions were not only shaped by their personal attachment to the lost baby but also influenced by their cultural and familial backgrounds:

For me, it wasn't like a miscarriage; it was already quite big. It felt like I lost a child, and the feeling was completely different. (P2)

It’s different; it could already move. It felt like raising a child, just inside my belly for a few months and then suddenly gone. (Cried) (P5)

It’s not considered a person if it hasn’t been born, right? Especially when (nurse) showed it to me, it was too small, didn't even look like a person. It’s better not to consider it one, it’s easier to bear that way. (P6)

Also, these factors might, to some extent, influence the rituals that participants engaged in after the stillbirth. Despite strong emotional attachments, formal mourning practices typical for the loss of a family member were not observed, largely because it was required by law for hospital to dispose of the deceased fetus. However, some participants did engage in minimal rituals:

There wasn't any ceremony, mainly because there was no (body) to handle; the hospital took care of it, so there wasn’t much we could do about (a ceremony). (P1)

We didn’t hold any (ceremony); just looked at it (the deceased baby) then the hospital handled it (the corpse). When I went back home, my family said not to hold one, maybe it’s an old custom. I didn't ask further. My husband and I later bought some paper offerings and burned them, just to send off the child. Didn’t tell anybody about it though. (P3)

The local custom in my hometown doesn’t hold ceremonies for those not born, and also there was no body, you (the hospital) didn’t give us (the corpse), so we couldn’t hold one (ritual). Occasionally, when I really think of it, I might say a few words in my heart, but I try not to think about it too much. (P10)

Discussion

Stillbirth can be a significant life event for a woman who has conceived and carried the fetus inside her for months, marking not just a loss of life but also a profound interruption of what was a deeply personal and transformative journey of childbirth. This event often leaves lasting emotional, psychological and sometimes physical scars.4 As revealed in our study, the impacts of stillbirth are multifaceted.

Theme 1 showcased significant individual variability, reflecting a broad spectrum of resilience and vulnerability. This theme is exemplified by the differing levels of emotional preparedness and subsequent psychological outcomes observed among the women. Some participants reported being forewarned by medical professionals about potential adverse outcomes, which provided them with a degree of mental preparation.

For instance, participant 3, who was informed of the likelihood that the baby might not survive until birth, experienced profound sadness but managed to maintain some level of emotional control and eventually focus on recovery and future possibilities. Similarly, participant 4, aware of the risks due to advanced maternal age and preexisting complications, prepared mentally for the possibility of loss, which somewhat cushioned the emotional blow when the stillbirth occurred. Participant 10 also noted a degree of preparedness, stating that while the loss was deeply saddening, life’s ongoing demands necessitated a degree of emotional compartmentalisation, particularly in caring for another child and meeting work obligations.

In stark contrast, other participants encountered overwhelming grief that severely impacted their psychological health, illustrating the need for substantial emotional support and professional intervention. Participant 5, for example, found the memory of the baby’s movements in utero particularly haunting, leading to an emotional breakdown during the interview. Participant 7 described the post-stillbirth period as a drastically altered state of being, where even breathing became laborious, necessitating psychological therapy and medication. Participant 13’s inability to ‘let go’ of the grief led to engagement with a support group and psychological treatment, which provided some relief through shared experiences and professional guidance.

This variability in emotional impact and coping mechanisms underscores the importance of tailored approaches in post-stillbirth care. Though the depth of grief was profound in almost all cases, participants who had some level of anticipation or understanding of the potential for loss seemed to manage their initial reactions more effectively, which is consistent with Grauerholz et al’s findings on the prolonged grief reactions following a reproductive loss.16 However, for those unprepared or particularly sensitive to their loss, the emotional toll was debilitating, requiring intensive psychological support and intervention.

These findings highlight potential merits of preemptive counselling and ongoing mental health support for expecting mothers identified at high risk of stillbirth. Moreover, they stress the need for accessible and responsive support systems, both informal (family and community) and professional (medical and therapeutic), to help individuals navigate their grief and recovery processes. This comprehensive support is essential for both emotional and psychological healing and assisting women in making informed decisions about future pregnancies and managing their long-term mental health, an issue also mentioned by our participants in theme 2 where they indicated concerns about future pregnancies.

Furthermore, this demand and stress of support systems is also partially reflected in theme 3, where both positive and negative statements about participants’ support received reflected their needs of support. Theme 3’s insights into the quality and adequacy of the support systems further accentuate the complexities faced by women after a stillbirth, which reveals that while some participants benefited from robust support networks, others felt neglected and underserved, highlighting disparities in the availability and effectiveness of support mechanisms. This discrepancy often hinges on factors such as geographical location, socioeconomic status and cultural norms, which can significantly influence the accessibility and quality of support services.1719 Healthcare systems should consider to integrate mental health services with maternal care protocols, ensuring that all women undergoing stillbirth receive comprehensive psychological assessments and are provided with or referred to the necessary support services.

Furthermore, these findings should inform policy changes aimed at standardising care for women experiencing stillbirths. There is a pressing need to develop policies that not only ensure equitable access to physical and psychological health services but also promote education and awareness about stillbirth. Such initiatives could help mitigate the stigma associated with stillbirth and improve societal support, as reflected in subtheme 1 under theme 3, ultimately fostering a more supportive environment for grieving mothers.2022 Additionally, enhancing training for healthcare providers to recognise and address the emotional and psychological needs of women experiencing stillbirth is vital in providing compassionate and effective care.23 24

The physical aftermath of stillbirth and concerns about future pregnancies emerged as a prominent theme in our findings, highlighting both the immediate and long-term impacts on participants’ health and reproductive plans. The physical toll of carrying a pregnancy to an unfortunate end significantly affected the women, both physically and psychologically, influencing their thoughts on future childbearing.6 25 26

Participants described the stillbirth as not only a profound emotional ordeal but also a significant physical challenge with lasting effects, which is consistent with reports on women from other countries.6 27 For example, participant 3 noted feeling physically fragile and debilitated for over a month, leading to concerns about future reproductive capabilities and the potential difficulties of conceiving again. Similarly, participant 4 reflected on the additional challenge of age and vitality, expressing apprehension about the risks of attempting another pregnancy after such a traumatic loss.

The fear of recurrence was a common thread, as articulated by participant 8, who, despite the desire for another child, decided to postpone further attempts due to the extensive physical and emotional damage sustained. This decision underscores the deep-seated impact of stillbirth on personal and familial planning, where the balance of desire for a child and fear of repeating past trauma becomes a central struggle.

Participant 10’s anxiety about potential pregnancies highlights the pervasive uncertainty and fear that can follow a stillbirth, with every menstrual delay triggering deep-seated fears of facing another possible loss. This anxiety illustrates how deeply a stillbirth can affect one’s day-to-day living and emotional well-being.

Moreover, the impact on sexual relationships and intimacy, as experienced by participants 7 and 14, shows another dimension of the struggle.28 29 The development of a phobia around sexual activity post-stillbirth reflects the complex interplay between physical recovery, emotional readiness and the fear of another pregnancy.6 Such fears not only complicate personal relationships but also pose a significant barrier to healing and moving forward.

This theme clearly delineates the need for comprehensive care that addresses both the physical and psychological aspects of recovery after a stillbirth. It highlights the importance of providing supportive counselling that can help manage the fears surrounding future pregnancies and sexual health, ensuring that couples receive the guidance needed to navigate their reproductive futures.

Healthcare providers must be sensitive to these concerns, offering a supportive environment where fears can be openly discussed and managed. Furthermore, this theme calls for broader educational efforts and support systems that can help demystify and destigmatise the challenges faced after stillbirth, aiding women and their partners in fully understanding and coping with the implications for their future family plans.

Participants’ perceptions of death in a stillbirth event varied significantly, with some viewing it as the loss of a fetus while others felt it as the loss of a child. These differing perceptions seemed to influence their emotional responses and the rituals following the loss. For instance, one participant described the experience not as a miscarriage but as losing a child, which evoked a much stronger emotional response. This sentiment was echoed by another participant who felt the loss deeply due to the fetus’ movements. In contrast, some participants found it easier to cope by not viewing the stillborn fetus as a fully formed person. This approach highlights how cultural, personal and possibly medical narratives around stillbirth may shape individual coping mechanisms.

Participants’ experiences demonstrate significant cultural and individual variations in the perceptions and rituals associated with mourning. Notably, the inability to perform traditional mourning rituals, largely due to hospital policies requiring the disposal of the deceased fetus, affected their bereavement processes. The absence of a physical body restricted their ability to engage in culturally meaningful rituals, which are pivotal in managing grief and facilitating emotional closure.3032

As a result, there is a critical need for healthcare providers to recognise and respect the diverse cultural and personal ways parents might wish to mourn. Healthcare systems might facilitate mourning processes by allowing parents options to engage with the deceased without breaching health precautions, even in the presence of stringent legal requirements.33 For instance, offering a private space for parents to say goodbye or allowing brief ceremonies could offer some solace and aid in the healing process.

Moreover, this situation may call for a re-evaluation of existing policies to better accommodate cultural and personal needs in the aftermath of a stillbirth. Engaging with cultural leaders and healthcare professionals to devise protocols that respect both legal standards and cultural practices could greatly improve parental satisfaction and emotional outcomes.

This study has two important limitations that should be noted when considering the applicability and scope of the findings. First, all participants in this research were married, which may limit the breadth of experiences and perspectives captured, as it excludes single, divorced or widowed women who may face different challenges and support dynamics following a stillbirth. Second, the study was conducted in an economically prosperous region of China, where participants generally come from more affluent family backgrounds. This economic context might influence the availability and type of support systems accessible to the women, as well as their experiences and expectations regarding healthcare and social services.

Conclusions

Post-stillbirth experiences among Chinese women are deeply individualised and influenced by a complex interplay of personal emotions, cultural contexts and medical interactions. It is imperative for healthcare systems to implement tailored care strategies beyond standard protocols to proactively address their varied emotional landscapes and physical concerns with an enhanced awareness of cultural sensitivities. Specialised training for healthcare providers should be devised to recognise and respond to the unique grief processes. Comprehensive support systems should be established to significantly enhance the recovery journey by providing essential resources and community connections.

supplementary material

10.1136/bmjopen-2024-088079 online supplemental file 1

Data availability statement

The original interview recording is not to be shared for privacy protection considerations. The data analysed are available on reasonable request to the corresponding author.

Review Process File
3 9 2024

Funding: The study was supported by Applied and Basic Medical Research, Scientific and Technology Development Plan Program of Suzhou City (Reference SKYD2023080).

Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2024-088079).

Provenance and peer review: Not commissioned; externally peer reviewed.

Patient consent for publication: Consent obtained directly from patient(s).

Ethics approval: Our study received ethical approval from the Ethics Committee of Dushu Lake Hospital Affiliated with Soochow University (Number 2024-011). Informed consents were signed by all participants before enrolment. The Declaration of Helsinki, institutional and national regulations on human subject protection and privacy protection were strictly followed throughout the study process.

Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
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