Parents’ experiences and need for social support after pregnancy termination for fetal anomaly: a qualitative study in China

Abstract

Objective

The aim of this study was to explore the experiences and need for social support of Chinese parents after termination of pregnancy for fetal anomalies.

Design

A qualitative study using semistructured, in-depth interviews combined with observations. Data were analysed by Claizzi’s phenomenological procedure.

Setting

A large, tertiary obstetrics and gynaecology hospital in China.

Participants

Using purposive sampling approach, we interviewed 12 couples and three additional women (whose spouses were not present).

Results

Four themes were identified from the experiences of parents: the shock of facing reality, concerns surrounding termination of pregnancy, the embarrassment of the two-child policy and the urgent need for social support.

Conclusion

Parents experienced complicated and intense emotional reactions, had concerns surrounding the termination of pregnancy and an urgent need for social support. Paternal psychological reactions were often neglected by healthcare providers and the fathers, themselves. These findings suggest that both mothers and fathers should receive appropriate support from family, medical staff and peers to promote their physical and psychological rehabilitation.

Correspondence to Professor Xiaoyan Yu; [email protected]

STRENGTHS AND LIMITATIONS OF THIS STUDY

• A qualitative design using face-to-face, semistructured interviews combined with observation is beneficial for improving the accuracy of data.

• The inclusion of accounts from mothers and fathers provided a rich insight into parents’ experiences and need for social support.

• Our population did not distinguish between stillbirth and fetal malformation, and the experiences and needs may be different.

Introduction

In 2017, the WHO estimated that approximately 280 000 neonates worldwide died of congenital malformations within 28 days of birth.¹ In China, the incidence of congenital abnormalities is approximately 5.6%, and approximately 1 million infants are born with birth defects every year.² With the development of medical ultrasound techniques and improvements in prenatal diagnosis, fetal malformations can be discovered during pregnancy. In China, implementation of the universal two-child policy has resulted in an increase in pregnant women with advanced age and high-risk pregnancies, which in turn has led to an upwards trend in the incidence of fetal abnormalities.³

Receiving a diagnosis of a fetal anomaly is distressing for expecting parents, who frequently experience intense emotional responses, including shock, grief, anger, uncertainty and fear.^4–6 A substantial proportion of expecting parents choose to terminate the pregnancy when their babies are diagnosed with life-limiting anomalies.⁷ Termination of pregnancy for fetal anomaly (TOPFA) not only causes great physical pain to women but also brings intense sadness and destructive psychosocial problems, which may last for many years,⁸ including anxiety, depression, post-traumatic stress disorder (PTSD), complicated grief and even suicidal thoughts.^9–12 There is a sizeable body of studies and recommendations associated with women’s experiences of grief and support needs.^13–15 Chen et al¹³ indicated that women with induced labour for fetal abnormality will experience a special coping process identified as ‘admitting the child’s existence, seeking information and emotional support, avoiding the TOPFA event and looking forward to the future’.

Traditionally, fathers often play the role of supporters for their partners, and fathers’ experiences of TOPFA have been underexplored in comparison to mothers.^{11 16} However, they also experience high levels of grief, anxiety, depression and PTSD,^{11 17 18} which requires acknowledgement and validation from healthcare professionals, family and friends, community networks and workplaces.¹¹ To date, a growing body of studies has focused on men’s grief and care experiences following abortion and stillbirth,^19–21 but few qualitative studies have exclusively focused on fathers’ psychological experiences and need for social support after TOPFA,^{22 23} particularly in the context of Chinese culture. In traditional Chinese culture, childbearing is highly valued by many couples, and TOPFA can bring feelings of guilt and inferiority.^{24 25} In addition, traditional Chinese cultural concepts such as reporting good news but not bad news and superstition can also have an impact on parents’ psychological experiences and coping styles.^{25 26}

According to the theory of social exchange, social support is a combination of functional support and structural support. Functional support includes emotional, instrumental, informational and appraisal support. Structural support includes formal support (eg, from healthcare professionals) and informal support (eg, from close family members and friends). Social support is often identified as the most critical component for mothers’ adaptation to the death of their children,²⁷ as it can effectively decrease parental grief, anxiety, depression and PTSD.^28–30 Therefore, it is necessary to explore the experiences and social support need of parents under the special cultural context of China to help clinical medical staff and social workers better understand and support parents.

Given the significant role of social support in reducing the negative psychology of parents, and the lack of recommendations on bereavement care for parents, especially for fathers, this study sought to explore the experiences and social support need of both fathers and mothers following TOPFA against the unique cultural background of China.

Methods

The study and manuscript were prepared following the Consolidated Criteria for Reporting Qualitative Research guideline.

Design and setting

This study employed a qualitative design using semistructured, in-depth interviews combined with observation. The purpose of interviewing both mothers and fathers was to provide a more comprehensive understanding of parents’ experiences and social support need from different perspectives. Because the research topic was sensitive and unfamiliar to the interviewees, the in-depth, semistructured interviews were particularly well-suited for the study.

The study was carried out in the Obstetrics and Gynaecology Hospital affiliated to the Medical College of Zhejiang University from March to September 2016. This hospital has set up the Zhejiang Provincial Prenatal Diagnosis Center, which has carried out a variety of prenatal diagnosis techniques, and is responsible for intrauterine diagnosis and intervention of fetal congenital abnormalities and genetic diseases in the province and surrounding areas.

Participants

A purposive sample of women who experienced TOPFA and their spouses was used. Inclusion criteria were that participants were at least 18 years of age, had experienced fetal abnormality (gestational week >14 weeks) confirmed by the Zhejiang Provincial Prenatal Diagnosis Center, decided to terminate a pregnancy for a fetal abnormality and voluntarily participated in the study with signed informed consent. The exclusion criteria were as follows: a history of psychosomatic disease, intellectual disability or illiteracy, and/or inability to understand the interview questions.

To ensure a representative sample and capture a wide range of perspectives, the heterogeneity of sample selection was expanded for participants’ age, education level, occupation and perinatal loss characteristics.

Data collection

Data were collected using face-to-face, semistructured interviews combined with observation. During the interview, the changes in the interviewees’ expressions, speed and intonation were observed and recorded.³¹ At the same time, their feelings or opinions were clarified and confirmed in time to ensure the accuracy of the data.

The researchers developed the interview outline before the interview, including the following open-ended questions: How do you feel when you received news of fetal anomaly? What are your concerns going forward? What kind of support and assistance would you like? How does the two-child policy affect your current pregnancy and future? The order of the questions in the outline is not fixed and can be adjusted according to the specific situation.

All interviews were conducted by the first author, who was specifically trained in conducting qualitative interviews. The interviewer had no prior relationship with parents, briefly introduced herself before the interview and used neutral, objective and non-leading language during the interview to maximise data integrity. Before the formal interview, the interviewer provided participants with a detailed introduction to our research purpose, significance, interview process and privacy protection measures for the interview content, in order to promote the research subjects’ familiarity with the research topic and reduce their sensitivity to the research topic.

The women and their spouses were interviewed separately in a quiet and undisturbed environment based on the convenience of the interviewees. After a written informed consent was obtained from the participant, interview was recorded with a digital recorder. The sample size of the study was based on the principle of information saturation.³² The study was discontinued when qualitative data reached saturation. When the number of interviews with mothers reached 15 and the number of interviews with fathers reached 12, our research data were saturated and no new information appeared, so the sampling was terminated. Each interviewee was interviewed 1~2 times, 40~60 min each time. In three cases, the spouse did not appear during the interview, so the interview was missing. To protect participants’ privacy, 15 women were numbered 1A~15A, and their spouses were numbered 1B~15B (3B, 13B and 15B were not present).

Data analysis

The interview recordings were transcribed verbatim into textual materials within 24 hours and checked by another researcher. The data were analysed by the same researcher who collected the information following Colaizzi’s seven-step procedure.³³ The specific steps were as follows: the researcher read all transcribed materials carefully, analysed and obtained significant statements, coded recurring and meaningful viewpoints, summarised all encoded viewpoints, developed a detailed and complete narrative, distinguished similar viewpoints and verified the obtained results with the interviewees to ensure the authenticity of the content. Initial themes were developed by the first author and then discussed and refined with qualitative research experts and all authors to avoid subjective influence and ensure the accuracy and objectivity of the results.

To ensure the trustworthiness of the data, the following procedures were used: anonymous transcription of each interview; making field notes after each interview and the field notes were examined during the data analysis to help better understand the data; the researchers remained reflexivity to recognise their potential effect on the study findings and maintained faithful to the perspectives of the interviewees. Finally, we conducted the last step of the Colaizzi’s seven-step procedure. The participants were invited to respond to the obtained results. The results were presented to them in a general overview table containing quotes, emerged meanings, all themes and subthemes. If the interviewees disagree with the results, the researchers then rechecked the relevant codes to conduct the final analysis. In this step, the research team verified the obtained results with the interviewees to ensure the accuracy and credibility of the results. All interviewees considered that the results represented their perceptions and no significant themes were missed.

Patient and public involvement

None.

Results

Finally, 12 couples and 3 additional women (whose spouses were not present) were interviewed. The demographic information of the participants is shown in table 1, and perinatal loss characteristics are shown in table 2. A total of four overarching themes were identified across the interviews, each with some subthemes (see figure 1). Details of the themes are outlined below.

Table 1

Participant demographic information

Demographic information	Numbers	Identifiers
Maternal age (years)
<35	9	2A, 7A, 8A, 10A, 11A, 12A, 13A, 14A, 15A
≥35	6	1A, 3A, 4A, 5A, 6A, 9A
Paternal age (years)
<35	7	2B, 7B, 8B, 10B, 11B, 12B, 14B
≥35	5	1B, 4B, 5B, 6B, 9B
Maternal education
Senior high school/below	4	1A, 3A, 8A, 14A
College education /above	11	2A, 4A, 5A, 6A, 7A, 9A, 10A, 11A, 12A, 13A, 15A
Maternal occupation
Full time	10	1A, 2A, 5A, 6A, 7A, 10A, 11A, 12A, 14A, 15A
Self-employed/other	5	3A, 4A, 8A, 9A, 13A

Table 2

Participant perinatal loss characteristics

Perinatal loss characteristics	Numbers	Identifiers
Fetal diagnosis
Stillbirth	3	3A, 6A, 10A
Fetal malformation	12	1A, 2A, 4A, 5A, 7A, 8A, 9A, 11A, 12A, 13A, 14A, 15A
Gestational age (weeks)
<28	11	2A, 3A, 5A, 6A, 8A, 9A, 10A, 12A, 13A, 14A, 15A
≥28	4	1A, 4A, 7A, 11A
Time interval (days)
<14	8	1A, 3A, 6A, 8A, 9A, 10A, 11A, 15A
≥14	7	2A, 4A, 5A, 7A, 12A, 13A, 14A
Manner of fertilisation
Conceived naturally	15	1 A-15A
Pregnancy intention
Unplanned pregnancy	6	1A, 3A, 8A, 12A, 14A, 15A
Planned pregnancy	9	2A, 4A, 5A, 6A, 7A, 9A, 10A, 11A, 13A
Number of living children
0	6	2A, 5A, 7A, 8A, 12A, 13A
≥1	9	1A, 3A, 4A, 6A, 9A, 10A, 11A, 14A, 15A

Time interval: time interval between detection of fetal abnormality and admission to hospital.

Figure 1. Thematic map. Theme 1: The shock of facing reality; Theme 2: Concerns surrounding termination of pregnancy; Theme 3: The embarrassment of the two-child policy; Theme 4: The urgent need for social support.

Theme 1: The shock of facing reality

Subtheme: Query and verification of fetal abnormalities

Without psychological preparation, parents initially showed strong shock and denial in the face of the diagnosis of fetal abnormalities. They often took the initiative to think about the causes of fetal abnormalities and repeatedly sought confirmation.

I broke down and sat in a hospital chair for two hours, not believing it (participant 13A).

I couldn’t accept it [foetal abnormality] at first… Took my wife to a bunch of hospitals to make sure of it (participant 14B).

Subtheme: Abandoning the fetus with reluctance and struggle

After identifying fetal abnormalities, bereaved parents often struggled between continuing the pregnancy and inducing labour. In the interview, 11 parents showed obvious entanglement and reluctance when forced to make a choice.

Until the last second before induced labour, I hoped there would be a miracle (participant 2A).

If I had enough money, I would have still wanted to give birth to him [referring to the abnormal foetus]…. As a father, I was still reluctant to give up. I sent him to the operating table with my own hands. It was not that he gave up on me, but I gave up on him (participant 14B).

Especially in the face of non-fatal fetal abnormalities, it was more difficult for parents to make the decision to induce labour, and four parents had a strong sense of uncertainty.

At present, there are uncertain answers. For us, there was too much uncertainty, so we dared not take this risk to give birth to our children (participant 2A).

Due to the uncertain nature of the lump at present, it is difficult for us to make a choice emotionally. We don’t know whether the decision to induce labour is right or wrong (participant 5B).

Subtheme: Compromise with reality and seeking spiritual comfort

After objectively weighing the advantages and disadvantages of medical risks, fetal health and potential future economic burden, parents were forced to acknowledge reality, choose induced labour and seek spiritual comfort. In the face of fetal abnormalities, nine men accepted reality more pragmatically than women.

I believed in science because the baby was a flawed life and could not survive. That is all we could do. We have tried our best (participant 9A).

This was a confirmed fact. If the child would be born with so much pain, we would rather make the choice to terminate in the early stage (participant 12B).

Five parents received spiritual comfort and support from their living children, and the living children also made the parents more confident in their decision to induce labour. Some parents sought spiritual comfort by believing in religion.

My daughter was very clever and kept asking me about my condition, which is also a comfort to me [expression was comfortable]. At my age, even if the baby was born, his quality of life would not be high, and I do not want to force my daughter to be involved (participant 3A).

Buddha has spoken of fate… I comforted myself, thinking that I had no fate with this child, so as to calm my heart, and that I was lucky to find out the foetal abnormality early (participant 13A).

Subtheme: Intense grief

Parents felt intense grief following the death of the fetus, similar to the loss of other relatives.

When the doctor said that the baby’s foetal heartbeat disappeared, I felt heartrending pain (participant 3A).

During the interview, there were five fathers weeping in sadness, indicating that the fathers also had complex grief. However, in traditional thinking, spouses mainly play the role of supporters and need to be strong to avoid aggravating the sorrow of their wives. Therefore, they often hid their sadness in front of their wife and family.

I didn’t show sadness in front of my wife, I wanted her to feel that I wouldn’t care too much about the outcome, but my wife felt that I wasn’t sad at all and didn’t care about the child, and I was actually very sad [with tears in his eyes, voice trembling] (participant 1B).

I really felt a pity in my heart [he expressed regret many times to researcher), my wife could cry, but I couldn’t [the corners of his eyes were wet] (participant 4B).

Family members, especially grandparents, also had grief, and the grief of family members could aggravate the grief of parents.

I didn’t want others to know about it [TOPFA event], especially my mother who was also looking forward to the baby. Facing the reality of the abnormal foetus, I was very sad and afraid that my mother’s sadness would aggravate my sadness (participant 3A).

After the induction of labour, the role of parenthood was completely interrupted, and four pregnant women and their spouses felt at a loss.

I felt that this happened suddenly [crying loudly], and it was difficult to accept it for a while. When I saw all the baby-related supplies, I would think about it [TOPFA event]. I was very reluctant to leave this baby. I was pregnant when I was admitted to the hospital, but I came home with nothing. It was even more sad to see others holding their babies (participant 3A).

Subtheme: The shackles of traditional thinking

Traditional Chinese ideas such as ‘family succession’, ‘son preference’ and ‘superstition’ brought pressure to parents. Seven couples in this study were bound by traditional ideas.

My dad already had three granddaughters, and was looking forward to having a grandson, which was a little stressful for me (participant 10B).

In a country like China, if the neighbours in the countryside suspected that the baby was not developing well, they would certainly speculate, which might cause some gossip (participant 14B).

At the same time, due to the conservative idea of ‘reporting good news but not bad news’, some parents were unwilling to share their sad feelings with others to avoid and cover up their inner grief.

I didn’t want to see anyone when I got home, I wanted to be alone in a small room where no one could disturb me, and I didn’t want others to know about it (participant 3A).

Subtheme: Rumination

After accepting the reality of fetal abnormality, 8 parents were still confused about the causes of fetal abnormality and reflected on their own deficiencies during pregnancy. This rumination would lead to parents’ strong sense of guilt and self-blame.

My wife had a cough in the early stages of pregnancy, and a plaster was applied to her neck… We worked at Taobao and faced the computer for a long time every day. We really did not exercise enough, and our immune systems were not very good … (participant 14B).

I wasn’t ready for this baby. I was pregnant unexpectedly. Without knowing I was pregnant, I took cold medicine and underwent anaesthesia, so I was an unqualified mother [with tears in her eyes] (participant 12A).

Theme 2: Concerns surrounding termination of pregnancy

Subtheme: Concerns about induced labour

Rivanol amniotic cavity injection is the most commonly used method of labour induction in the middle and late stages of pregnancy. Most parents did not understand the complete process of labour induction and were concerned. In this study, nine pregnant women and their spouses were full of anxiety and fear about the process of induced labour.

I was worried about this delivery. I had heard the process was terrible (participant 2A).

Subtheme: Concerns about women’s physical and mental recovery

Induction of labour not only made women suffer great physical pain but also caused great psychological trauma to them. Three spouses expressed strong concerns about maternal physical recovery, and four spouses were more worried about the psychological recovery of the wives.

I was worried about my wife’s health. After all, I could only talk about the next one [referring to the next pregnancy] after her physical recovery (participant 14B).

I was worried about my wife’s psychological recovery [repeated many times]. If she didn’t adjust to this well, having another child would increase her burden (participant 10B).

Subtheme: Concern about the subsequent pregnancy

TOPFA not only brought intense grief, anxiety, fear and other psychological problems to parents but this traumatic experience also left an indelible psychological shadow on them. Parents who have the need to get pregnant again were especially concerned about the risk of the subsequent pregnancy.

There was a psychological shadow, and I always felt that I had experienced a miscarriage. Even if everything is normal in the next pregnancy, there will be faint worries (participant 6A).

Theme 3: The embarrassment of the two-child policy

Subtheme: Contradiction between older age and the two-child policy

The comprehensive liberalisation of the two-child policy has aroused countless couples’ desire for having children, including older couples. However, in the face of the reproductive risks brought by old age, many families fall into the embarrassing situation of whether to have a second child or not. In this study, nine cases were giving birth to a second child, and six of them were mothers of advanced age.

I just wanted to have another child. It was better to have two children. After the second child policy was liberalized, this age [approximately 40 years old] was a concern. The second child policy was embarrassing for us… Our family and economic conditions allowed us to have a second child, but our physical conditions were not suitable (participant 6B).

Subtheme: Eager to give birth to new life again

The reproductive responsibility of women in traditional thinking and the second child policy have effectively aggravated the parents’ desire to conceive again. Ten parents expressed their desire to conceive a healthy new life again.

Especially when the two-child policy was liberalized and others had two children, maybe only having a healthy baby could truly eliminate the impact of this event [TOPFA] (participant 11B).

Theme 4: The urgent need for social support

Subtheme: Support from medical staff

When parents knew that the fetus was abnormal, they were eager to know the advantages and disadvantages of continuing pregnancy and induced labour, the root cause of malformation, what physical recovery would look like after induced labour and other information from medical staff. In addition, they were eager for understanding and care from medical staff.

The views of medical staff play a leading role in our choice (participant 13 A).

My wife was still thinking that the child may be good until now, so I wanted the doctor to tell her that the child is definitely bad and make up a white lie to alleviate her guilt, which would also be a balm to my heart (participant 5B).

Subtheme: Family support

In the face of TOPFA, parents need the understanding and support of their families, especially the support of their spouses.

My husband’s company is the most important thing. If my husband is by my side during childbirth, my heart might be stronger (participant 6A).

Spouses who played an important role of supporters would also provide effective support to their wives based on their psychological needs and personality traits.

I told my wife from all aspects that the decision to induce labor was the right one… Now my wife was still thinking that the baby might be normal, so I wanted the doctor to tell her that the child was definitely abnormal, fabricate a white lie to alleviate her inner guilt (participant 5B).

I took care of my wife, accompanied her, and took her out for relaxation. I would do my best to do well. There are many kinds of support, and I should support her effectively according to her personality characteristics (participant 10B).

Subtheme: Peer support

Peer support refers to making patients with similar diseases, physical conditions or experiences share information, emotions, ideas or behavioural skills through diversified forms.³⁴ Five women believed that the exchange of experiences and emotional resonance with peers was very beneficial to their psychological recovery.

I joined a peer group. They also experienced it [TOPFA]. It was convenient to talk with them. They knew what I wanted to know. Seeing the photos of their babies [healthy babies born later] was very lively and lovely, which gave me a lot of positive energy. They were also more compassionate and gave me suggestions (participant 14A).

Peer support was very helpful to my wife. The most important thing was confidence and informational help. They also went through TOPFA step by step and sorted out a set of processes, which was of great significance (participant 14B).

Six women were eager to communicate with peers to obtain information and emotional support.

I also wanted to communicate with my peers… I wanted to ask them how they came out in the end. We could prepare for the second child together (participant 11A).

Discussion

Fetal abnormalities are serious traumatic events for parents,³⁵ which can make them face psychological crisis and complex psychological problems. The findings of the present study demonstrate that parents have experienced the following mental processes: denial and verification of fetal abnormalities, abandoning the fetus with reluctance and struggle, an acknowledgement of reality, intense grief, a confrontation with the shackles of traditional thinking, rumination, concerns after deciding to induce labour and a desire for social support. To our knowledge, this is the first study in China to include both fathers and mothers in the exploration of parents’ experiences and need for social support following TOPFA.

Consistent with previous studies on parents’ experiences of TOPFA,^{6 23 36} when receiving the cruel fact of fetal abnormality, parents often struggle with doubts, self-blame, reluctance and sadness. We also found that most fathers in our study chose to hide their real emotion to support their spouses and reported more rationalising than mothers, which is similar to prior findings.^{22 23 37} This may be because the social role given to fathers as supporters of the mother³⁸ leads to the suppression of grief, anxiety and stress in fathers, potentially increasing the risk of chronic psychological problems, so that the fathers will experience more anxiety in the subsequent pregnancy.³⁰ In addition, Chinese parents are bound by traditional ideas such as ‘family succession’, ‘son preference’ and ‘superstition’, which often brought pressure to parents and increased the stigma they felt. However, the surviving children could bring spiritual comfort and support to parents, which is an important predictor of parental grief intensity.³⁹

Unlike previous studies reported that fathers felt overlooked and marginalised at hospitals while their partners were receiving treatment,^{23 36} we found that fathers, like mothers, mainly focused on maternal physical and psychological recovery and the impacts on the subsequent pregnancy, they did not realise that paternal psychological trauma also needs attention. TOPFA can increase the psychological stress of parents, especially mothers, in subsequent pregnancy, which is consistent with previous studies.^{40 41} Parents who experience fetal abnormalities have a high degree of anxiety and fear in subsequent pregnancies, and especially worry about the risk of recurrence.⁴¹

Under the influence of the Chinese two-child policy, parents’ desire to conceive again was more urgent, but they were still full of doubts about the causes of fetal abnormalities and what to do in the subsequent pregnancy. Therefore, medical staff should establish a long-term follow-up mechanism to continue to pay attention to parents’ physical and mental recovery^{23 42} and provide them with the necessary knowledge and psychological support, such as information about abnormalities, childbearing and pregnancy examination, to promote them to conceive a healthy new life.

Many studies have demonstrated the role of social support in alleviating negative emotions in parents experiencing TOPFA, including anxiety, depression and PTSD.^{28 43 44} Parents in this study also showed a strong need for social support. When first informed about the fetal abnormality, parents were full of confusion about the causes and worried about the impacts on any subsequent pregnancy. They urgently need professional guidance and suggestions from medical staff. At this period, the information support from medical staff constitutes the main part of the support system, which can help parents make good decisions; these findings were in line with a prior study.²² Therefore, medical staff should take the initiative to understand the thoughts and needs of parents with fetal abnormalities and patiently provide them with complete, adequate and appropriate informational support to help them establish a scientific understanding of fetal abnormalities and relieve their confusion and feelings of guilt to facilitate their process of grieving.^{45 46} Echoing the experiences of parents in the broader pregnancy loss literature,^{47 48} parents in this study also need psychological counselling and empathetic care from medical staff following perinatal loss. Therefore, healthcare professionals should offer parents’ bereavement care with empathy and cultural sensitivity.²²

During induced labour in hospitals, parents need care and emotional support from their families, especially the support of their spouses; this finding is consistent with prior studies.⁴⁹ Fathers will also actively take on the role of supporters, providing various forms of support based on their wives’ psychological needs and personality traits, including appraisal support for recognising their wives’ induced abortion decisions and instrumental support such as daily care, company and helping wives shift their attention. However, fathers, like mothers, also need support from their families.⁵⁰ Therefore, medical staff should guide family members to treat fetal abnormalities scientifically, provide help and care for parents in life, and give emotional understanding and assistance to make them feel the warmth from their families.

Peer support has long been considered an essential component of a supportive network for people facing adversity.⁵¹ Parents in this study also showed a strong need for peer support, and they hoped to obtain informational support and emotional resonance through the experience of sharing and communicating with their peers. Healthcare providers should establish a peer support platform according to the needs of parents, provide a platform for parents to exchange experiences, help them eliminate loneliness and helplessness, release inner pressure and transmit positive energy.

Based on the above parents’ experiences and social support need, we preliminarily constructed the following social support model (see figure 2) and verified the effects of family support and peer support; see our previous studies for details.^{28 52} In the future, we will further verify the effect of the social support model.

Figure 2. Social support model (family support; hospital support; peer support).

The study has a few limitations. First, there may be subtle differences in the psychology of parents who induce labour due to stillbirth and fetal malformation, but our population did not distinguish between stillbirth and fetal malformation. Second, we found that most fathers tended to avoid interviews, so we did not collect other demographic information except age to improve fathers’ participation. Furthermore, some bereaved parents, especially fathers, refused to participate in the study, and based on the principle of information saturation, we ultimately included 15 mothers and 12 fathers, this small sample size would decrease transferability of our findings. However, the psychology of parents who refused to participate in the study is also well worth attention, and future research should explore essential reasons for their refusal to participate in the study and provide targeted psychological support. Finally, TOPFA will not only bring psychological trauma to parents but also have a negative impact on the psychology of the whole family; therefore, it is necessary to further explore the influence of TOPFA on other family members (such as grandparents, surviving children, etc) and the interaction of emotions among family members.

Conclusion

This study contributes to the limited body of international studies on parental experiences and social support need following TOPFA. The findings suggest that TOPFA is an extremely painful experience for parents, characterised by psychological reactions of denial and the need to verify fetal abnormalities, abandoning the fetus with reluctance and struggle, intense sadness, an acknowledgement of reality, a confrontation with the shackles of traditional thinking, rumination, concerns surrounding induced labour and a need for social support. Paternal psychological reactions were often neglected by healthcare providers and the fathers, themselves, because they often played the role of supporters, which requires more attention. Based on the above parents’ experiences and social support need, medical staff should provide tailored information and emotional support for bereaved parents and guide family members in support. Finally, medical staff should establish a peer support platform to provide peer support for parents.

Thanks to all the participants and researchers involved in this study.

Data availability statement

Data are available upon reasonable request.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

This study was approved by the ethics committee of the Women’s Hospital School of Medicine, Zhejiang University (IRB Number 20150071). All participants were voluntary participation in the study and gave written informed consent prior to participation. All methods were performed in accordance with the relevant guidelines and regulations.

Footnote

Contributors SS and XY conceived the study. SS, XY, YS, JQ, YT and FW designed the study. SS performed the study and collected qualitative data. XY, YT and FW supervised and instructed data analysis of the study. SS, YS, JQ and QY sorted and analysed the data. SS, YS, YT prepared figures 1 and 2. SS wrote first draft and all authors contributed to finalising the manuscript. The guarantor XY accepts full responsibility for the finished work and the conduct of the study, had access to the data and controlled the decision to publish.

Funding This work was supported by Health Science and Technology Plan of Zhejiang Province (Foundation Number: 2022KY185).

Competing interests None declared.

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.

Provenance and peer review Not commissioned; externally peer reviewed.

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