Miscarriage is the most common kind of pregnancy loss, affecting around one in four pregnancies and is a devastating outcome for families (Dugas and Slane, 2022). Miscarriage is defined as when a baby (fetus or embryo) dies in the uterus during pregnancy. In the UK, the definition of miscarriage applies to pregnancies up to 23 weeks and 6 days (Quenby et al, 2021). Any loss from 24 weeks is called a stillbirth, and any baby born alive, even before 24 weeks (living for a matter of minutes) is considered a live birth and a neonatal death (Quenby et al, 2021).
Although miscarriage is common, the reasons for it happening remain generally unknown. The main causes of miscarriage are thought to be genetic, hormonal, blood clotting problems, infection and anatomic reasons (Blue et al, 2019). Not knowing why a baby or fetus died can have a profound effect on the family. The too often taboo topic of death in the UK population, has led to sub-optimal public knowledge of miscarriage (Patabendige et al, 2020). Its devastating impact can extend more widely than families, and can include the healthcare practitioners caring for families throughout this traumatic time.
There is disparity in the structure of care available to families and limited support for healthcare professionals. Evidence in the literature suggests that awareness of environment, compassion and available support are known to make a difference to the experience of all involved (Gandino et al, 2019). However, knowledge on ‘how’ to structure and implement support for healthcare professionals caring for families who experience baby loss is limited.
The James Paget University Hospitals (JPUH) NHS Foundation Trust in the east of England is an acute UK NHS trust serving a rural population of approximately 230 000. Local data from JPUH show that for 2020, 2021 and 2022, the service booked 1993, 1835 and 1796 pregnant people to the maternity service, respectively. Of those booked, baby loss (including stillbirth, feticide late termination, non-registerable births and early neonatal deaths) over the same time period was experienced by 7.7%, 3.8% and 5.3% respectively.
In first trimester miscarriage scenarios at the JPUH, there is variation in practice as to where pregnant people and families are seen. This can include the early pregnancy assessment unit (available Monday–Friday, 8am–5pm, or out of hours during weekdays and day and night over the weekend) in a side room in the emergency department or occasionally on non-maternity or gynaecology inpatient wards. The unavailability of urgent gynaecological/obstetric ultrasound scans out of hours is included on the trust risk register, as pregnant people need to wait until Monday (or Tuesday on bank holidays) morning for confirmation of baby loss through scans.
Those who are 12–15 weeks and 6 days pregnant attend the emergency department for any concerns and from >16 weeks, attend the central delivery suite. The emergency department side room was allocated to maternity scenarios in 2011 after Care Quality Commission feedback. However, the emergency department is based at the front of the hospital building, with the maternity wards, clinics and central delivery suite based in the centre and rear, which reduces the proximity of support available for doctors/the medical team and staff covering maternity services. The authors identified a gap in care contributing to outcomes, experience, safety and quality of services based on this variation in practice.
This article describes the evolution of a service evaluation project named ‘Max's Legacy’ (Box 1) undertaken between May 2022 and February 2023, which aimed to understand and explore existing support mechanisms available to families and staff, and the experiences of all involved in baby loss, as well as to make recommendations for future care of all groups.
Box 1.Background to Max's legacy
- Max passed away at 18 weeks antenatally
- His death was identified at the 20-week scan appointment
- This year, he would have been 8 years old
- His mother identified bereavement support for families as essential for healthcare services
Methods
A baby loss aftercare project team was created by a maternity support worker and included the early pregnancy assessment unit senior nurse and support worker, obstetric consultant, registrars and baby loss awareness charities from across the region. The maternity support worker was supported by and accountable to the head of midwifery, a consultant midwife, an external mentor and scholarship programme facilitators. A mixed-methods service evaluation approach was used to collect data on staff and family experiences.
Data collection
Table 1 outlines the phases, approaches and timelines of the project. Participants were contacted through posters, displayed in clinical areas, and contact with local charities who support families through bereavement. Staff were contacted regarding phase one by email, as well as poster information. In all phases, families and staff were able to participate through either completion of surveys (with completion acting as consent to participate) or by contacting the maternity support worker leading the project (via email or telephone).
Table 1. Data collection methods
| Phase | Approach | Timeline | Dissemination approach | |
|---|---|---|---|---|
| One | Microsoft Teams surveys (consent through completion of survey) |
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| Analysis: December 2022Quantitative data collection and thematic analysis of free-text responses | ||||
| Two | Interviews: semi-structured (verbal consent received) | Medical colleagues | December 2022 | Self-selection by staff: approach to the project lead following survey completion |
| Analysis: December 2022–January 2023Thematic analysis of transcripts | ||||
| Three | Focus groups (verbal consent received) | Pregnant people and families who had experienced baby loss | December 2022 | Promotion through local charities, the maternity support workers' existing networks, maternity voices partnership |
| Analysis: December 2022–January 2023Focus group discussion methodology | ||||
| Four | Retrospective data collection | Early pregnancy assessment unit and maternity service data | February 2023 | Formal report and publication |
| Formal write up: March–April 2023Retrospective descriptive collection of baby loss data | ||||
Phase 1
Key themes for survey questions distributed to healthcare professionals were based on existing baby loss literature, and included types of baby loss scenarios, support, environment, communication, training and future service desires. Quantitative data were collected through Likert scales and free-text options were offered for respondents to expand on their answers. Responses to the surveys informed the development and content of semi-structured interview questions.
Phase 2
Eight interviews were conducted with medical colleagues (doctors) who contacted the project lead following completion of their surveys and wished to be further involved in sharing their experiences and contributing to potential improvements. Interviews were conducted face to face, voice recorded and transcribed verbatim.
Phase 3
Two focus groups were attended by 16 people across two evenings in December 2022. These included mothers, fathers and relatives who had previously or were currently experiencing baby loss. No timeframe was placed on those experiencing ‘previous’ loss, as all contributions were valid. Focus groups were undertaken in a private support centre based on the hospital site, led by the project lead and supported by a member of staff from TIME Norfolk baby loss awareness charity. Funding for refreshments was provided through the hospital quality improvement hub.
Data analysis
For the phase 1 surveys, descriptive data were used to present quantitative results, and thematic analysis of free text responses was included for qualitative data. The Microsoft forms survey platform used to collect data also developed graphs and charts, which displayed the results in pictorial form.
For phase 2 interviews, thematic analysis (Braun and Clarke, 2006) was conducted by the project lead and a member of the scholarship programme team.
Focus group discussion methodology was used for phase three data analysis, and in phase four, retrospective collection of baby loss data in the local service was used to describe the baseline data to understand the service.
Ethical considerations
This project was undertaken as a service evaluation meaning no approvals were required for its conduct. Ethical approvals were also not required; however, ethical behaviours have been maintained throughout.
All participants (staff and families) in the project could have been deemed vulnerable, because of the sensitive nature of the topic being investigated. They were supported and protected through access to two local bereavement charities (who were involved in the project from the outset), and with support from the hospital chaplaincy team. Fortunately, the majority of families and staff involved had previously been supported by the maternity support worker leading the work and reported feeling comfortable discussing any concerns with her. Caveats were presented at each phase of the project for participants who knew they could leave at any time and without giving reason. All participants felt strongly that while this work may be triggering for them, it was very important that it was conducted in order to help protect people who may experience baby loss in the future.
Results
The maternity service booked 1685 pregnant people for antenatal care between May 2022 and February 2023. There were 1531 live births, and the early pregnancy assessment unit saw 353 pregnant people in their first trimester who experienced miscarriage or signs of potential miscarriage in the same timeframe. Families typically only ‘book’ a pregnancy from 6 weeks onward, therefore the real number is likely to be higher. The number of non-booked pregnancies ending in miscarriage are unknown. During data collection of miscarriage figures related to gestation split by trimester, it became clear in evaluation that this level of data was not routinely collected. The baby loss data presented are therefore restricted to first trimester miscarriages only.
Phase 1 and 2: quantitative and qualitative results from staff experiences
All members of staff in maternity services were invited to participate in phase 1, the survey. The overall response rate was 31.95% (54/169). Respondents included midwives, midwifery support workers, sonographers, operating department practitioners based in emergency maternity theatre, doctors (foundation year 1 through to consultant level practice) and clerical staff. The highest level of survey response came from foundation year 1 and 2 doctors (64.7%), midwifery support workers (41.7%), and operating department practitioners (42.9%). Box 2 summarises the quantitative data responses to the survey.
Box 2.Summary of survey responses
- ‘The creation of a baby loss aftercare service is essential for families and staff support’ (100%)
- ‘I have been involved in assessing/triaging/scanning a woman who may have been experiencing a miscarriage’ (73%)
- ‘I needed more support in these situations’ (100%)
- ‘It would be beneficial to debrief, either formally or informally, in the team’ (95%)
- ‘I would benefit from having additional support from a bereavement maternity support worker during or after the scenario’ (89%)
- Midwives were most comfortable and junior doctors were least comfortable discussing baby loss with families
Four overarching themes arose from the interviews with doctors. These themes were recognition of personal loss and consequent impact, environment, support and communication (Table 2). The themes were underpinned by a thread that the authors titled ‘psychological distress’. This was characterised through verbal communication as well as visceral and physical responses, such as tears and breath-holding. While the staff were distressed during the interviews, they also reported the process being cathartic, as it was the first time they ‘felt cared for’ and ‘considered’. Table 2 provides examples of quotes from interviews which align to each theme.
Table 2. Quotes from interviews reflective staff themes
| Theme | Quotes | Suggested improvements |
|---|---|---|
| Recognition of personal loss | ‘I lost my baby last year. On this rotation, I've seen so much loss and every time that personal loss returns. It's very traumatic’‘I don't think people think about the impact of these situations on the staff who are involved in them. We experience loss, then have to go back into the same room and have the conversation with another family, all the while picturing what happened to us on the same bed’ |
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| Environment | ‘A lady in [the emergency department] was miscarrying and the maternity side room was being used. She miscarried in a bay with a curtain across the front. The trauma for us both was terrible. It shouldn't have happened’‘Some trusts have Rainbow clinics, which are specifically for supporting families going through baby loss and afterwards. This would be really good for JPUH’ |
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| Support for staff | ‘I saw a lady mid COVID-19 who was on her own and potentially miscarrying. She didn't know though and I didn't know how to say it.I was on my own and my colleagues were busy so I didn't have any support. I couldn't say the words to her so I provided some hope and left to see another patient. I regret that. She miscarried the next morning on her own. I wish we'd both had more support’ |
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| Communication | ‘The only comms training I received was about an hour session on baby loss in medical school. In reality and practical sense though none of this was useful. Some training on communication for this topic when we join maternity services would be really beneficial and potentially prevent some of this trauma’ |
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Phase 3: family and relative focus groups
Challenges experienced by those in attendance at the phase 3 focus groups were communicated and improvement suggestions made. Table 3 shows quotes that reflect these themes, and the suggested improvements. The main themes were ‘where do we go for help when we are ready?’, information and aftercare support, environment and compassionate communication.
Table 3. Quotes from focus groups
| Theme | Quotes | Suggested improvements |
|---|---|---|
| Where do we go for help when we are ready? | ‘I just didn't know what to do’‘I didn't want help straight away because it was too raw, but when I thought I did, I still didn't know who I could contact’ |
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| Information and aftercare support | ‘We just don't know where to go for information, you feel pretty lost at the time and like it only happens to you’‘If there was someone who could check in with us later on, that might be helpful, even if we don't need help’‘I didn't need help until about 6 months later, and then I really needed it but I didn't know what support I could reach for’ |
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| Environment | ‘That [emergency department] room will stay in my head forever. You can just hear people drunk and shouting outside and you know you're losing your baby’‘One of ours was an early loss and we were in [the early pregnancy assessment unit], it was a much kinder place to be than our later loss…in A&E’‘We lost at 14 weeks and got passed back and forth between all the departments, as apparently there's nowhere specific to go between certain weeks of pregnancy if you miscarry. It's bad enough without feeling an additional burden on the hospital’‘At [Norfolk and Norwich University Hospitals] they have a Rainbow clinic, JPUH needs one of those too’ |
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| Compassionate communication | ‘People need to think about what they say to you at these times. Not being told you're losing a baby and not knowing if it's happening or not is just as bad as hearing it is happening. It must be hard to tell people this but just say it’ ‘Never say “I don't know why they've sent you here, if it's dead it's dead”. And please don't comment on “it being worse if you were further along”’ ‘A phone call from someone to check in with us a week later was very much appreciated. It wasn't the words really, it was just that we felt someone cared’ |
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Following the first three phases, improvement implementation occurred at pace using a ‘you said, we did’ approach (Whitehouse et al, 2022). Table 4 describes the status and impact of the project to date. Box 3 provides quotes from those using the bereavement aftercare service following initial implementation of the recommendations.
Table 4. Status and impact of recommendations
| You said | We did (current status) |
|---|---|
| Creation of a Rainbow clinic | Under review and funding bid |
| Appointment of a bereavement maternity support worker |
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| 24/7 early pregnancy assessment unit service | Under review and discussion |
| Move emergency department maternity side room to maternity service for those presenting with possible miscarriage up to 16 weeks | All women now attend central delivery suite directly supported by early pregnancy assessment unit. This has been standard practice since July 2022 |
| Monthly support group for families led by maternity support worker | Support group has been in place since December 2022, with 10–15 people attending each session. Group is led by bereavement maternity support worker |
| Continued and enhanced collaboration with local and regional babyloss awareness charities | Engagement with charities on a monthly basisJoint bids made for funding to contribute to the new bereavement/Rainbow suite |
| Upgrade of bereavement suite on central delivery suite (in external review conducted by regional maternity team) | Staff consulted on three designs (drawn examples) for new bereavement suite through online survey to all staff working in maternityInvolvement of bereavement support groups and co-design with maternity voices partnership to ensure mothers, birthing people and families are involved in decision making and planning stages |
Box 3.Quotes demonstrating impact
- ‘It's reassuring when you're on shift because we know the staff and patients will get amazing support’. Staff 1
- ‘I felt that was a really positive group and I felt happy leaving there, much happier than I did with traditional therapy’. Mother 3
- ‘It's really important that this service isn't lost. I don't know what we'd do without it. Maybe I wouldn't be here at all now, you saved my life’. Mother 8
- ‘We've lost two babies since our first healthy baby. We had no support after the first loss and incredible support, thanks to this work, after the second. We're pregnant again now and didn't know how scary this would be, constantly thinking our baby was going to die again, but [the maternity bereavement support worker] has come to every appointment in her new role and it's made all the difference to us both’. Dad 1
- I feel less trauma from my own loss when [the maternity bereavement support worker] is on shift and I'm caring for a family who are losing their baby’. Staff 3
Discussion
Silence around miscarriage is a common thread (Hiefner, 2020). When considering the one in four statistics of baby loss, the authors suggest it is an odd concept that silence screams so loudly. Silence can be isolating to those who experience it; however, culturally speaking in the UK, grief has typically been a private emotion and this seems to have continued to modern day in the dialogue about pregnancy (McGarva-Collins et al, 2022). The concept is exacerbated when refined further to men's experience of miscarriage (Harty et al, 2022). Medical terminology also compounds this narrative, for example the phrase ‘waiting until you are out of the woods’, generally until after the first trimester, before sharing pregnancy news openly suggests not sharing until the statistics of success are better and miscarriage is less likely (Brann et al, 2020). Consequently ‘you won't have to share bad news if good news becomes bad’. From a philosophical perspective, this feeds the cultural and unintended isolating machine of silence in grief (Bute et al, 2019) and in turn impacts families and staff alike through denying the existence of that which for a short time was there.
Baby loss and miscarriage literature tends to focus on families experiences (Helps et al, 2020; Steer and Lee, 2020). In the authors' experiences, to speak of the impact on families without considering the impact on the staff providing care is neglectful, as the two are intertwined. The majority of people who wish to grow a family are of working age; therefore, it would be reasonable to assume that many losses will happen to individuals in employment (Chartered Institute of Personnel and Development, 2022), leading healthcare staff to potentially become service users themselves.
Employers are generally underprepared in terms of support and wellbeing provision, in terms of policies, guidance and training, for staff who have experienced pregnancy loss, although the reason for this is unknown (Chartered Institute of Personnel and Development, 2022). The impact is particularly pertinent in maternity services, where baby loss and bereavement is part of the care provided to patients. Staff may return to work following their own baby loss experience and despite their grief, be imminently faced with a similar scenario in which they are professionally accountable for their actions and emotions.
In the present study, staff reported feeling ‘cared for’ and ‘considered’ for the first time through the process of participating in this project evaluation. They felt supported in sharing their stories in this safe space, but it was immediately clear that appropriate bereavement support was required. The lack of support services in organisations for staff is a worrying concern (Brann et al, 2020). This is important because psychological safety and wellbeing are hugely significant in staff retention (Geisler et al, 2019). As such, the authors propose that protecting people's wellbeing, rather than accepting such emotional trauma as ‘part of the job’, is a key aspect to staff retention. Operational and system pressures, as well as lack of training and education for conducting such conversations, can lead to a lack of discussion or debrief and result in a ‘moving on to the next patient’ scenario without adequate time for reflection or action (Hunt, 2020). Sharing experiences can lead to improvements in mental health and coping mechanisms.
‘Linguistic action and interaction’ (talking as a cathartic measure) is well recognised as a supportive measure in grief (Marx et al, 2017). Formal therapy is the most recognised form for supporting bereavement (counselling and psychotherapy). Informal therapy lends itself to one person helping another for advice and help, or in the case of the authors' peer support forum, a group of people addressing collective grief and trauma (Eyre, 2019). The most commonly perceived risk associated with peer support is the potential for triggering self-harm (Seif et al, 2022). Fear of this trigger has halted peer support groups in organisations that are risk averse. Although the benefits of peer support are under-researched, they can include positive impacts on wellbeing, emotional strength and confidence (Rostron and Livermore, 2022). Therefore, there is the potential that patients and families have missed opportunities for support. The work at the authors' institution in establishing a bereavement aftercare service has demonstrated the importance of including patient voices in developing support and pathways of care, as well as contributing to some understanding of the positive benefits of peer support.
Dissemination of results
Two posters were produced for the JPUH Research, Evaluation and Quality Improvement Scholarship Showcase event (held in March 2023) and the bereavement midwife support worker shared the work at four external (regional and national) conferences; the Norfolk and Waveney Inaugural Integrated Care System Conference (October 2022), The Chief Midwifery Officer for England Research Strategy Launch event for the East of England (February 2023), TIME Norfolk babyloss awareness day (June 2023), and The Inaugural National Maternity Support Worker Conference (March 2023).
Social media activity, particularly on Twitter, using ‘whywedoresearch’ ‘maxslegacy’ and ‘babylossawareness’ hashtags, has been used from the outset of the project design through to dissemination of the work to date to share progress. Regular feedback is provided to families and parents at the monthly support forum and attendees are able to continue to contribute their thoughts and improvement suggestions on an ongoing basis. The maternity support worker has been recognised with two awards, locally a Gold Award for the JPUH Reconditioning Games (December 2022) and nationally through a prestigious Chief Midwifery Officer for England Silver Award, Midwifery Support Worker Clinical Excellence Award (January 2023). Both have recognised her personally, but have also led to increased visibility of the vital work and role being undertaken.
Important considerations
One individual exists as a trial bereavement maternity support worker in a time-limited pilot post. A business case is under development to make the post permanent. Ethically, there is a responsibility to continue this role, now that its importance to both staff and patients/relatives is clear and there is evidence of their voices calling for continued action. The psychological impact that this type of work requires produces a large emotional load on the staff member; therefore, appropriate support through line management and elsewhere should be available to them. The creation of the aftercare service as a collaborative team between maternity, mortuary, chaplaincy and external charities goes some way to mitigate this.
Conclusions
Communication, support, recognition of loss and environment were key contributing themes to positive and negative experiences and impacted both staff and families. Peer support enhanced formal bereavement therapy in terms of recovery and acceptance of loss. Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Key points
- The ‘Max's Legacy’ project was developed to understand family and staff experiences of baby loss, with the aim of improving services available to all groups.
- Maternity bereavement services should be developed with patient, family and staff voices at their core, with equal value attributed to each.
- Services should resourced with dedicated, funded posts to be successful.
- Max's Legacy: Baby-Loss Awareness Project has been instrumental for improving the bereavement services and care offered at the trust.
CPD reflective questions
- Thinking widely, who might be impacted from baby loss scenarios and require support?
- What national policies and strategies are available to support clinical organisations to prioritise bereavement care in maternity services?
- Does your organisation have policies in place to support staff experiencing baby loss or caring for women going through this after experiencing a baby loss themselves?