A qualitative inquiry into women’s experiences of severe maternal morbidity

ABSTRACT

Severe acute maternal morbidity (SMM) is a near-death experience during pregnancy, childbirth or termination of a pregnancy. Nine women recruited from hospital intensive care or high dependency units following the birth of their baby participated in two qualitative interviews about their SMM experience. The interpretative phenomenological analysis led to the identification of three superordinate themes related to participants: moving from a state of normal pregnancy to being severely unwell, being in critical care and returning to normal. Participants’ transition to a SMM event occurred quickly and was frightening, with participants expressing concerns about their husbands/partners’ trauma. Participants’ time in hospital was particularly hard for those separated from their baby, with this eased by staff kindness and family support. After discharge participants continued to seek explanations for their SMM. Implications include more formal support for mothering when women are in maternal critical care, and support for husbands/partners following a SMM event.

KEYWORDS:

• Maternal morbidity
• maternal critical care
• motherhood
• medical explanations

A severe acute maternal morbidity event is defined by the World Health Organisation as ‘the near death of a woman who has survived a complication occurring during pregnancy or childbirth or within 42 days of the termination of pregnancy’ (Say et al. 2009, p. 289). While maternal mortality is a relatively rare event in high-income countries it is estimated that severe maternal morbidity (SMM) events occur in 1–4 per cent of pregnant women, and are associated with significant maternal complications, pre-term delivery and neo-natal death (Waterston et al. 2001; Kilpatrick et al. 2016). SMM is therefore considered an indicator of quality of care (Meaney et al. 2016), with the auditing of SMM cases a mechanism for identifying failure in maternity care.

Admission to intensive care is often used as a proxy for identifying cases of SMM (Geller et al. 2004). In Aotearoa New Zealand a national audit of all admissions to intensive care units (ICU) and high dependency units (HDU) of women who were pregnant or had delivered within the past 42 days during an 18-month period (August 2013–January 2015) found a high rate of substandard care (MacDonald et al. 2016). The severity of morbidity was deemed to be potentially preventable in 34 per cent of cases reviewed. A further 29 per cent of cases were classified as not preventable but improvement in care was needed. Provider (clinician) factors were identified in almost all preventable SMM cases – 93 per cent – with systems factors identified in 60 per cent and patient factors in 24 per cent of cases (EJ MacDonald, personal communication, 2017). System improvements in maternity care will therefore help reduce the severity of SMM events. In recent years there has been an increase in qualitative studies of women’s SMM experiences, in recognition that patients’ experiences can inform these system improvements ( Hinton et al. 2014; Dunning et al. 2016). Findings from these studies are described next.

The emergency associated with a SMM event can leave women feeling out of control (Dunning et al. 2016) and powerless (Meaney et al. 2016). From their synthesis of 12 qualitative studies of SMM, Furata et al. (2014) found that women felt safer when they trusted their health care team, even when there was little communication with them during the emergency. When women felt ignored or treated inadequately, this manifested itself in animosity towards those treating them (Furata et al. 2014) and heightened women’s anxiety (Meaney et al. 2016). Women’s husbands reported they felt ‘abandoned, excluded and separated from their partners’ when the SMM emergency happened (Dunning et al. 2016, p. 8), leading Knight and colleagues (2016) to recommend that women’s partners receive frequent updates along with encouragement to call on other family members for support.

A SMM event often leads to separation of mother and baby as one or both are admitted to critical care, leaving women unable to fully care for their babies (Knight et al. 2016). Dunning et al. (2016) found that information about their SMM may help; for example, letting women who have experienced a postpartum haemorrhage know they may have difficulty breastfeeding may go some way to restoring women’s ‘faith’ in their bodies (Fenech and Thomson 2014). Being transferred out of critical care and encountering hospital staff who did not understand what they had been through was hard for women when they were still struggling to care for their baby (Hinton et al. 2015; Meaney et al. 2016). Knight and colleagues (2016) recommended that women be transferred into side rooms, rather than a ward, and that staff be encouraged to be empathetic and supportive.

Women can find it difficult to adjust to life after a SMM event due to the array of physical, emotional, social and financial consequences they experience, irrespective of the severity of the event (Meaney et al. 2016). Women who had a poor experience of health care, including feeling let down by health practitioners they trusted, were more likely to have difficulties dealing with the trauma of their SMM event (Furata et al. 2014). This included experiencing flashbacks and nightmares, sleep disturbance and disrupted family relationships (Fenech and Thomson 2014). From their meta-synthesis of 13 studies, Fenech and Thomson (2014) found that women who had experienced a traumatic birth went on to grieve the loss of their ideal self, ideal motherhood and ideal family.

Meaney et al. (2016) recommended debriefing women about the SMM event once they have passed through the transitional period of returning home but still need to know what happened to them. Furata et al. (2014) found when debriefing did not happen, women’s ruminations could result in them apportioning blame to themselves, to the care they received, and/or to the unfairness of life. In a retrospective case review, Furniss et al. (2018) found that fewer than 1 in 10 women (8.9 per cent) in hospital an Aotearoa because of a SMM event received 4 components of best evidence discharge care; that is, a debriefing/explanation about their SMM event, a follow-up specialist appointment, a referral to social support and/or mental health services, and a detailed discharge letter to their primary practitioner and midwife. Only 38.5 per cent of the women received an event debrief. Most women were therefore not offered the most basic of clinical care – an explanation of what had happened to them.

The present qualitative study gathered the stories of women in Aotearoa who had experienced a SMM event. The goal of this study was to gain insight into the lived realities of these women in order to contribute to improving the quality of care women receive when they experience a SMM event.

Method

Recruitment

Women admitted to ICU or HDU following the birth of their baby were eligible to participate in this study. Over 18 months ICU/HDU clinicians (obstetricians/midwives) talked with eligible women about the study and sought their permission to be contacted by the researchers. Women who gave their permission were contacted 6–12 weeks after they had been discharged and, if they were still interested in participating in the study, an interview was arranged.

Participants

Permission for researcher contact was received from 13 women. Eleven women could be contacted, 10 consented to be interviewed, and one withdrew two hours prior to the first interview. The nine women interviewed ranged in age from 22 to 45 years old (mean = 29.0 years). Three identified as NZ European, two as Māori, two as Chinese, one as Indian, and one declined to give her ethnicity. Seven participants were in long-term heterosexual relationships (marriage, civil union, other); two described themselves as having never been legally married or in a civil union. The SMM experience for five participants was with their first baby, for four participants it was with their second baby, and one participant’s baby died (see Table 1).

Table 1. Overview of participants’ SMM experience.

Participant pseudonym	Baby no.	ICU nights	Hosp. nights^a	Brief description of SMM incident^b	Clinical condition
1 Jayden	2nd	2	7	Jayden started bleeding at 7 months. A scan revealed baby was 5 weeks behind in terms of expected development and the placenta was small. She was transferred to a secondary hospital and when ‘things weren’t looking so good’ she was flown to a tertiary hospital where the baby was delivered 8 weeks early by emergency caesarean and admitted to NICU.^c Jayden spent two nights in ICU because she had seizures after delivery. The baby remained in NICU for 6 weeks, at which point they were flown to their local hospital for 1½ weeks where the baby came off most of her medication.	Haematuria antenatally – renal calculus diagnosed Seizure at time of caesarean and post-op – not thought to be eclampsia or epilepsy Baby very growth retarded
2 Leah	2nd	1	5	When Leah was 39 weeks pregnant she went to the hospital for a routine check-up with her midwife. The obstetrician she also saw decided she needed an immediate caesarean as her liver was not doing well. She was found to be suffering from diabetes insipidus. Her veins kept collapsing during the surgery, so the drugs did not work properly and she was temporarily left feeling nauseous, shaking, and unable to hold the baby.	Acute Fatty Liver and Diabetes Insipidus – emergency caesarean section
3 Lori	1st	4–6	11	At 36 weeks Lori’s blood tests were unusual and her oxygen level was low. Tests and scans revealed that she had a big ‘hole in her heart’ that she’d been born with. The doctors were surprised that her organs were healthy and everything was working. She had an emergency caesarean and her tubes were tied as another pregnancy was considered life-threatening. She is now on medication and awaiting a decision about whether her heart can be operated on.	Previously undiagnosed congenital heart defect – septal defect
4 Selma	1st	2	5	Selma went into the hospital when her waters broke early one morning. She was at term and expected a normal delivery. Her labour was induced when it was decided her waters had been broken for too long, and she was given an epidural that afternoon. She then received a second epidural during the following night when the needle of the first one broke. At 9am the next morning she had a caesarean, at which time she haemorrhaged, losing 6 litres of blood, and her uterus was removed.	Emergency caesarean section Haemorrhage and hysterectomy
5 Skye	1st	8	3	Skye said everything had gone well with her pregnancy and baby was induced because she was overdue. She then had a caesarean after 17 hours’ labour and still not being fully dilated. The day after she was feverish and there was pus coming out of her caesarean wound. She was diagnosed with cellulitis wound infection and transferred to intensive care. There she was transfused again, had two CT scans, ultra-sounds and x-rays. It was suggested to her that the infection occurred because she was overweight.	Emergency caesarean section Severe sepsis
6 Samar	2nd	4	11	Samar described the delivery of baby as normal and they were discharged two days after the birth. Then she started getting headaches, experiencing swelling, and her vision blurred. Her husband called her midwife who visited the next morning and found her blood pressure was very high, and she was admitted to the hospital’s emergency department. She was eventually diagnosed with postpartum pre-eclampsia.	Severe pre-eclampsia
7 Tara	1st	–	-	Tara’s baby was delivered at 24 weeks due to pregnancy complications. Tara was flown from her home town to a tertiary hospital and had an emergency caesarean there. The baby was placed in NICU and was later transferred to a tertiary hospital closer to Tara’s home town.	Unknown
8 Violet	1st	1	7	Violet waters broke one evening and the next morning she went into hospital. Nothing was happening and around 2pm it was discovered that her waters hadn’t all broken. After this was done, she was induced and her labour then picked up. The baby was born at 7.45pm that night. Violet had suffered a third-degree tear and was admitted to ICU. While there she haemorrhaged, losing four litres of blood.	Postpartum haemorrhage due to atony and trauma
9 Vanessa	2nd	2	7	Vanessa’s blood pressure was elevated at 33 weeks and she was put on medication by her obstetrician. Other than this her pregnancy went well. One evening in week 36 of her pregnancy baby was particularly active. Vanessa woke up early the next morning with cold sweats, followed by what felt like a ‘very bad period pain’. At the hospital, they could not find baby’s heartbeat and her specialist confirmed that baby had died. The baby was induced but when Vanessa haemorrhaged she had an emergency caesarean.	Pre-eclampsia, placental abruption and disseminated intravascular coagulopathy (DIC)

^aHospital nights were additional to ICU bed nights. A dash in either column indicates missing data.

^bThese explanations of events are derived from participant interviews and their reporting of health practitioner interactions.

^cNeonatal intensive care.

Interviews

The first interview with participants took place 3–5 months following the delivery of their baby. Apart from knowing that one participant had lost her baby, the interviewer was not aware of any details of the participants’ experiences. Following introductions and the consent process, participants were invited to recount the story of what had happened to them during the birth of their baby. The interviewer asked questions to explore the story in more detail or to seek clarification. A second interview was conducted 3–5 months after the first interview. Participants were invited to provide any updates about their birthing experience (e.g. further explanations for events, ongoing health issues), along with more general updates about themselves and their family. Participants each received a $50 petrol voucher following each interview as a thank you.

The two interviewers (FC, KS) are female Māori researchers, working in a multidisciplinary, multi-ethnic women’s health research team. FC is the more experienced qualitative researcher and conducted most interviews, with KS attending alongside for two interviews before she conducted a second interview with one of the participants by herself. The interviewers were therefore insiders – as women, as a mother (FC), and as Māori women for the Māori participants – and outsiders – as not having experienced a SMM event or having been in critical care, and as ethnically different from the majority of participants.

Ethics

Ethics permission for this study was granted by Health and Disability Ethics National Committee (HDEC), grant number 13/CEN/96/AM03. A participant distress protocol was also developed to support researcher responsiveness (adapted from Draucker et al. (2009)). Both interviewers explained to participants that they were not medical practitioners, so would not be able to answer any medical queries. Our Kāhui Kaumātua (Māori elders advisory group) provided guidance (e.g. the research space should be where participants ‘re-tell’ rather than ‘re-live’ their experience) and was available to follow-up with participants or researchers if requested.

Analysis

Participants’ SMM journeys were analysed using interpretive phenomenological analysis (IPA). IPA involves the interpretation of participants’ narratives elicited during semi-structured interviews in which participants have been allowed to speak freely, tell and reflect upon their stories, and express any ideas or concerns. IPA seeks to understand people’s experiences in specific circumstances, as well as people’s understandings of these experiences (Clemerson et al. 2014).

The verbatim transcripts of participants’ interviews were initially analysed case-by-case (by FC). Repeated reading of a transcript was followed by notes being made in subsequent readings about what was described, language used and any conceptual interpretations. These notes informed the development of initial themes, with the final set of themes and sub-ordinate themes being identified by cross-case comparisons (Connerty et al. 2016). As IPA is about the analyst’s interpretation of respondents’ accounts of events, FC’s views, understandings and experiences will have influenced this interpretation (Smith et al. 2009). The research team provided a credibility check of the analysis, and the draft findings were shared with participants.

Findings

The SMM experiences of participants are described below by three super-ordinate themes that reflect phases in participants’ experiences: from normal to severely unwell, being in critical care and returning to normal (see Table 2). Quotes from participants (using pseudonyms) have been included to strengthen the validity of the findings.

Table 2. Overview of super- and sub-ordinate themes.

Super-ordinate themes	Sub-ordinate themes
From normal to severely unwell	Normal pregnancy
	Crisis
	Impacts of emergency on partners
Being in critical care	Sense of self
	Medical intervention and care
Returning to normal	Going home
	Understanding their SMM event

From normal to severely unwell

Normal pregnancy

Most participants described their pregnancies prior to their SMM event as ‘pretty good’ (Violet), with few if any complications. After she conceived through IVF, Selma said she ‘had a very smooth, healthy pregnancy’. They had had what they thought of as normal pregnancies; that is, happy, expectant and uncomplicated. While Samar and Vanessa’s normal pregnancies were briefly disrupted in their third trimester by high blood pressure, they resumed following medical reassurance. Vanessa’s obstetrician put her on blood pressure medication when she was 33 weeks pregnant, after which she was able to explain other aspects of her pregnancy.

… things were normal, my feet were swollen though, but I think that’s just generally because it was summer, it was hot and I was heavily pregnant, so it was uncomfortable – Vanessa

Of the three participants admitted to hospital part-way through their pregnancy, Tara and Lori’s normal pregnancy journey ended when they were diagnosed with pre-eclampsia: Tara at 23 weeks and Lori at 36 weeks. While Tara did not receive a full explanation and felt somehow to blame, Lori was told her ‘platelets were dropping drastically’. This medicalised explanation and her baby almost being at full-term allowed her to accept the early intervention of the health system.

Jayden was the exception as she did not feel she had had a normal pregnancy. Although her five-month scan had shown that she and baby were ‘fine’, she said her body had been under a lot of stress as she was caring for her sick mother, organising her siblings and taking care of her young daughter. When she was seven months pregnant she started bleeding and hospital tests revealed her baby was too small. She resisted being admitted and rushed home to be with her mother, prioritising her caregiving roles over her own and her baby’s health, and the hospital had to recall her. Her commitment to her whānau (family) over her own needs is not uncommon among Māori women (La Grice et al. 2017).

In spite of their largely normal pregnancies, only Samar had the normal birth experience she anticipated, returning home two days after she delivered her baby vaginally in hospital. Her happiness was however short-lived as she was re-admitted through the hospital emergency department two days later with very high blood pressure.

Before the day that that happened, we were so happy … everything was fine [and] within a short span of time, within a couple of hours … we are here [in hospital, in] this situation; it was horrible – Samar

Crisis

Participants’ transition to a severe maternal morbidity (SMM) event took them ‘a long way from a normal birth’ (Knight et al. 2016, p. 5), and they all described frightening experiences. Participants often spoke of themselves as passive and grateful recipients of health care when their SMM event unfolded, as they viewed these events as well beyond anything they could control. As Vanessa explained, she ‘just wanted them to save me because I was so scared’. Samar and her husband were also ‘very scared’ and trusted her health practitioners to prevent her from dying. When they were frightened of the possibility of impending death, participants were comforted by an aura of medical heroism; namely, that their medical team would go to extraordinary lengths to protect and save them (Plews-Ogan et al. 2017). This meant they could confidently put their lives in the hands of their medical team. As Knight and colleagues (2016, p. 8) found, the ‘calm professionalism’ of health practitioners reassured women in emergency situations. Women, in turn, were happy to relinquish their autonomy to receive health care (Meaney et al. 2016).

Three participants had postpartum haemorrhaging. While Violet remembered nothing of her SMM event, Selma said the last thing she knew was a lot of people gathering around her after her baby was delivered and a nurse pushing the emergency button. When her specialist confirmed that their baby had died Vanessa was induced for a vaginal birth. While she remembered being told ‘the most horrific news’ of the loss of her baby, Vanessa also only recalled the start of her SMM event.

It was like a tap had turned on and very, very strongly and it wasn’t turning off. There was blood everywhere, it was not nice. And within an instant there were 20 people in the room – Vanessa

All three woke up surrounded by medical equipment and critically ill patients following the birth of their baby; a long way from an anticipated maternity ward and the fulfilment of their expectations of birth (Hinton et al. 2015). The women then had to reconstruct their SMM event from the accounts of family members who had been present and from health practitioner debriefings, in order to make sense of their situation (Adamson et al. 2004).

Impact of emergency on partners

Seven participants had male partners (including husbands) and three spoke about what the SMM event had been like for them. While Samar was able to speak about this from her first-hand experience, Selma and Vanessa versions of events were largely reconstructed from what they had been told.

Samar’s husband ‘started crying’ when she was re-admitted to hospital and this was the one time she described him as explicitly letting his worry show. He then stayed by her side and insisted on asking questions of staff while at the same time reassuring and supporting her. She appreciated him taking charge of the situation on their behalf, saying ‘I am very lucky to have a husband like that’. As her SMM event unfolded relatively slowly, her husband was able to assert his presence and get information from her health practitioners. Even so, any trauma he experienced remained largely unacknowledged and his emotional needs unmet.

When the SMM event unfolded as an emergency, as in the case of a postpartum haemorrhage, partners were forgotten as health practitioners focussed on saving the woman’s life (Snowdon et al. 2012; Dunning et al. 2016). Selma’s husband was present throughout her SMM event, including being in theatre for her caesarean, but he was essentially a passive observer. When her postpartum h­aemorrhage occurred, ‘he went out of the room with the baby’. His emotional state was evidenced by him forgetting to call home to inform their families of what had happened for the first two nights Selma was in the hospital. Vanessa described the trauma for her husband of being handed their dead baby in a ‘dark waiting room’ and it being an hour before he saw anyone or was told how she was doing. While she had since been supported by hospital social workers and counsellors, no-one apart from her obstetrician, family and friends ever asked him how he was. She saw this as unfair as he had also lost their baby.

Sure, our body carried the baby, our body delivered the baby, our body potentially stopped the pregnancy as well, but they’re the father. They’re as much of a parent as the mother – Vanessa

Being in critical care

Sense of self

Although participants’ reactions to being in critical care varied, all recognised it as signalling a change in their lives (Adamson et al. 2004). Whether this change challenged their self-identity depended on whether they felt supported and understood by those providing them with health care. A passive and accepting engagement with their circumstances allowed Leah and Violet to detach their self-identity from what was happening around them (Harrison et al. 2003). Leah described being in ICU as ‘there’s not much I can do about it other than sit here and get better’.

Other participants had a more difficult time as they felt misunderstood by their health practitioners. Although Samar was being told not to ‘stress’ in order to reduce her blood pressure, she considered herself to be a healthy person in a stressful situation rather than someone who could voluntarily be less stressed. Lori felt her health practitioners did not trust her mothering capabilities because she was on new heart medication. Her frustration with their scrutiny and not being able to enjoy her baby in the hospital led her to discharge herself after 11 days, even though she was still weak. These misunderstandings signalled to participants that their health practitioners did not really know them. By resisting the challenge to their self-identity they resisted the hegemonic authority of the medical profession (Pitts 2004).

When it was baby who was in critical care, participants’ motherhood identity and routines revolved around being by their baby’s side. When she was discharged from the hospital, Tara settled into visiting her baby in NICU every day. This routine gave her a sense of purpose as she became an expert in what was happening for her baby. Jayden also turned her attention to being by her baby’s side in NICU. She said she lied to hospital staff about how she was feeling to get discharged and go into accommodation near the hospital. There she established a routine, including regaining her fitness, that helped her cope while she watched and became an expert in her baby’s cares. In this way, participants were able to reclaim their baby as ‘theirs’ and assert their identity as a mother (Aagaard and Hall 2008).

Medical intervention and care

Most participants had praise for the health practitioners they encountered and were grateful for the care they received after the initial emergency of the SMM event was over. Four of the husbands stayed some nights with their baby at the hospital while participants were in ICU/HDU, and were helped by nurses to care for their babies. Lori described how the hospital had ‘accommodated my husband as well; they allowed him to sleep in the hospital’. Staff explanations that this was a dispensation from hospital rules left participants feeling buoyed by a sense of having received special treatment.

Contrary to this, participants felt disempowered when they felt that health practitioners inappropriately insisted on a treatment or were blaming them for their condition. For Lori, her sense that her health practitioners were fearful of her condition underpinned the pressure she felt they exerted on her to consent to sterilisation.

They said they had to tie my tubes because they were even surprised that I fell pregnant and that this condition could accommodate my pregnancy. They said they can’t take any chances with me; they have to tie my tubes so that I don’t fall pregnant again, because it’s very life-threatening – Lori

Skye fixated on a health practitioner remark that she had been at risk of infection because she was overweight. Even though her midwife was shocked by and disputed this remark when Skye repeated it to her, it weighed heavily on Skye’s mind and left her feeling she was to blame for ending up in ICU. These participants were effectively silenced by health practitioners (Snowdon et al. 2012), unable to contest the version of events they were given.

Returning to normal

Going home

The time between delivery and returning home varied greatly for participants, from six nights to many months. When they went home, most participants received support from their relations (e.g. their parents, their in-laws) and close friends. This was particularly important as participants were still recovering and in some cases could not lift or fully care for their baby. While Selma was upset about this, she did see a positive side, describing her maternity leave as her ‘first break from work since university’. Lori was in a similar situation to Selma but was without family support when she returned home. She described her maternity leave as stressful work, and she often had to reach out to strangers for help.

I just felt like I was busy working the whole time I was on leave because I had appointments for so many doctors for different things … and there was nobody to watch the baby, so I had to take her every time I went to the hospital and ask somebody to hold her while I was busy doing my tests. So, it was really more stressful than anything else – Lori

As might be expected from the disruption of her motherhood ideal in ICU and her acceptance of an explanation that blamed her for ending up there, Skye described herself as depressed for some time when she returned home. Her midwife was a key support for her during this time, providing both professional and personal advice as Skye tried to get back to a normal life.

While Jayden was healthy when she returned home, her aunt and uncle looked after baby at the weekends so that Jayden and her partner had time with their older girl and with each other. This family support enabled them to maintain their responsiveness to their baby’s needs during the week, as ‘she’s been in and out of hospital once a week and she picks up bugs real easily’. This was Jayden’s family’s new ‘normal’.

Other participants moved through their recovery period at home to resume their expected motherhood normal of being healthy, with a healthy baby. Samar’s husband bought a blood pressure monitor so he could check on her regularly once she was home. This freed her from being vigilant so she could focus on ‘getting back to normal’. Violet remarked that she ‘nearly fainted’ her first day home when she changed baby’s nappy as she was so tired. Her continued recovery time of two months at home was not unusual among participants, or among other patients who had been in critical care (Adamson et al. 2004).

Vanessa said that not a day goes by when she didn’t wish their son was there, but that ‘you’ve got to go on, you’ve got to continue living’. She knew it was okay to have bad days, but she did not want every day to be bad as she had an older child to care for. Her friends and family were central to her ability to cope.

… all my friends and family around me because everyone has been so amazing. We’re very lucky to have such great people in our lives, I really appreciate that – Vanessa

Understanding their SMM experience

All participants had sought an explanation for their SMM event and most had their hospital notes. Sometimes a SMM event had a straightforward explanation. Jayden’s baby has a genetic abnormality while Lori had a hitherto undiagnosed congenital heart defect. Both go some way to account for their experiences, although Jayden insisted that her body had experienced too much stress during her pregnancy while Lori maintained that her body managed the stress of her pregnancy. Other participants received medical explanations for the immediate or emergency deliveries of their babies.

Sometimes the explanations participants received did not answer all their questions. Tara had received some explanation but she still had questions about the care she was given and how responsive it was to her symptoms. Selma said she was ‘given a summary of what happened and why my uterus was removed’ and later her specialist also explained ‘two to three times to make sure I understood’. However Selma still felt that something was not right in her body, and she continued to pursue an explanation of ‘what happened on the inside’. Vanessa only knew reasons that had been ruled out for why her baby had died and had searched inwardly for things she might do different the next time she became pregnant, like not working so hard. She also knew that if she and her husband chose to have another baby, she would be under intense medical care.

Discussion

The present research elicited SMM experiences from a small but ethnically diverse group of women in Aotearoa. The research demonstrated that women have insightful stories to tell of their SMM events. Our considerate approach to them – both in the invitation to participate and then putting them in the ‘driver’s seat’ in the interviews so they could choose what they shared – was potentially an important contributor to this. Their SMM experience had often been recounted to their close relatives and friends prior to being retold for this study. However, the women said they had formulated succinct stories for those in their wider networks (e.g. work colleagues). Therefore, while the stories they recounted in their interviews may have been practiced, they remained intimate stories about the impact of SMM on their life-world. When asked, the women said they were motivated to be in this study by their desire to contribute to health system responsiveness to those affected by SMM events. This discussion, therefore, examines how their experiences might prompt improvements in maternal health care (Hinton et al. 2014).

For most of the women, their SMM event happened in the midst of what they considered to be a normal pregnancy. Their health practitioners acted swiftly and most women surrendered themselves to care. However, if other responsibilities occupied a woman’s mind (e.g. Jayden who was caring for a sick parent), they were not able to prioritise the health of themselves and their baby. When there is time for inquiry, a culturally responsive clinical assessment can provide health practitioners with a holistic picture of a woman’s life and how the health system can be most supportive (Pitama et al. 2014). This would place Māori women in particular within the context of their whānau roles and responsibilities.

Women were preoccupied with concerns about the trauma of the SMM event on their partners and the lack of support for them. Men who were excluded from the room when their partner experienced postpartum haemorrhage felt they were a not a priority for staff as they were not communicated with and their emotional needs went largely unmet (Snowdon et al. 2012; Dunning et al. 2016). Snowdon et al. (2012) question whether men need to be sent out of the room in an emergency, as them staying may comfort the woman and give the man (and potentially any birth partner) a greater sense of inclusion. They call for more debate and evidence to inform a potential change in practice to emulate the ‘family presence’ resuscitation protocols in place in many hospital emergency departments. While this may not suit all couples, family members have been found to benefit from being present during cardiopulmonary resuscitation without this interfering with medical care (Jabre et al. 2013).

After the crisis of their SMM event participants spent time in intensive care. Similar to Hinton et al.’s (2015) study, the kindness and flexibility of ICU staff made things more bearable for them. However, women should be able to rely on hospital policy rather than individual staff kindness to ensure their partners and babies are close by when they are in critical care. This would help support women to have contact with and to breastfeed their baby if they are able to or, at the very least, ensure they receive regular updates about their baby and photos (Knight et al. 2016). It would also provide an opportunity for women’s partners to be present when health practitioners provide explanations about events and describe on-going care (Snowdon et al. 2012), and to potentially receive counselling and support themselves. This may be especially important when women do not recall the events themselves. Thompson and colleagues (2011) have called on health practitioners to be particularly sensitive to the needs of these women for information about what happened to them and why, and what the implications are for their emotional and physical recovery. When couples are able to process this information together they may reduce the likelihood of long-term trauma (Meaney et al. 2016), as well as avoid negative repercussions of a SMM event on their relationship (Fenech and Thomson 2014).

The women’s husbands/partners had been invited to take part in the interviews for this study, and while two men were physically present at the time of the interview only one added some comments to the story being told. Inquiry into the trauma men experience when their partner/wife has a SMM event needs to occur, and it may be that men would be more comfortable talking about this with a male interviewer who knows how to negotiate a safe space for this sharing (Edwards et al. 2005). The experiences of the partners of women experiencing a SMM event can also contribute to health system improvements as they often hold knowledge of events that women, by virtue of being unconscious, do not. They can also speak about how birth partners can be supported.

When the crisis of their SMM event was over some participants were happy to bide their time and heal, while others wanted a voice in their health care. Hinton et al. (2014) stress the importance of good communication with health practitioners so that women know what is happening. Findings from this study indicate that good communication is also about health practitioners knowing when and how to re-engage with patients and share decision-making (Barry and Edgman-Levitan 2012). A specialist SMM event navigator or ‘family facilitator’ could help facilitate this (Snowdon et al. 2012). When re-engagement did not happen and women felt misunderstood and disempowered they did not take this out on their health professionals as Furata et al. (2014) had found. Rather they reasserted their autonomy by maintaining their own views (e.g. that they were in a stressful situation rather than personally stressed) or by simply removing themselves from the surveillance of their health practitioners.

Returning home and returning to ‘normal’ were spoken of as important transitions, even when participants had only a short stay in the hospital. Contrary to the women in Meaney et al.’s (2016) study, being dependent upon family members at this time did not challenge participants’ expectations of motherhood. Rather, they were grateful for the support. Talking about their experiences with close family and friends may have helped women process their SMM story and understand the explanation that may have eluded them when they heard it in the hospital (Knight et al. 2016). Questions from those listening to their story may have then prompted participants to seek out more detail from health practitioners involved in their care. Women’s debrief about events was therefore not just confined to hospital or to health practitioners (Furniss et al. 2018), and they continued to seek answers for a long time after they had been discharged. The health system can support women’s search for an explanation for their SMM event by ensuring health practitioners are available to respond to questions, even if they have been asked several times. When an explanation is not readily available, women may need additional counselling and support to gain understanding and restore their sense of control over their own bodies (Meaney et al. 2016).

The absence of close family support left participants reliant on the emotional support of health professionals, and sometimes even strangers when they needed assistance with their baby (e.g. Lori). For Skye the fat-shaming remark of an ICU staff member stayed with her and fed her self-blame and depression. Meaney and colleagues (2016, p. 5) found that ‘feelings of disempowerment endured a number of months after their experience and were compounded by women’s perceived inability to control both the morbidity and their own bodies’. If there is a lesson here, it is about hospital staff avoiding SMM explanations that blame women, even if one in four SMM events involves some patient factors (Furniss et al. 2018), because of the potential repercussions of self-failure and identity disruption. Future research might focus on the links between SMM explanations and women’s self-blame, and the consequences of women shouldering responsibility for severe maternal events. Skye’s story of self-blame may also have changed if she had had the opportunity to tell it to a wider circle of intimate others.

Limitations

The first limitation relates to the recruitment of women through hospital staff, as this raises the possibility that women who had had a preventable SMM event might not have been approached because they may have spoken negatively about the health care they received. Many of the participants in the present study lauded the health care system and the study’s qualitative, participant-centred inquiry means there is no way of triangulating their stories with health care records. This, combined with the small number of women interviewed, means that the findings might not fully capture women’s SMM experiences. Even so, the women interviewed had a range of SMM experiences, including extreme pre-term delivery and rare conditions. The second limitation relates to the small number of participants and the potential liberties taken in the analysis about what it means to have a ‘normal’ pregnancy, birth and motherhood experience. There may well be ethnic nuances we have missed in our generalisations that only further research within ethnic groups will clarify.

Implications

At a system level, this study suggests that hospital protocols allow partners to be accommodated on-site so they can care for their baby when the mother is in intensive care. This will enable women to be with their babies and for partners to be kept informed about progress. It can also be a time when support and counselling are offered to partners. The findings also indicate that there is immense value in women being provided with a readily understandable debrief/explanation for their SMM event. While this should happen when women are discharged (Furniss et al. 2018), it may need to be repeated and re-interrogated for some time after the event as women and their families seek to fully understand what happened. For health practitioners, the findings suggest that when feasible (i.e. outside of an emergency response) they enable women to share more in decision-making about their health care. This may also mean using assessment tools that provide them with good insight into women’s lives.

Acknowledgements

The research reported here was conducted as part of the Health Research Council funded study, ‘Addressing the burden and preventability of severe acute maternal morbidity’ (13/087). B. Lawton, Principal Investigator. Many thanks to reviewers for their thoughtful comments on the initial version of this paper.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Fiona Cram http://orcid.org/0000-0002-6047-8853

Kendall Stevenson http://orcid.org/0000-0003-0955-9014

Stacie Geller http://orcid.org/0000-0002-7557-7184

E. Jane MacDonald http://orcid.org/0000-0003-4605-6192

Beverley Lawton http://orcid.org/0000-0003-2447-8386

Additional information

Funding

This work was supported by Health Research Council of New Zealand [grant number 13/087].