A C TA Obstetricia et Gynecologica

AOGS CO N F ER EN C E R EP O R T

Sharing experiences to improve bereavement support and

clinical care after stillbirth: report of the 7th annual
meeting of the International Stillbirth Alliance
ALEXANDER E.P. HEAZELL1,2,, SUSANNAH LEISHER2, MAIRIE CREGAN2,3, VICKI FLENADY2,4,
€
J. FREDERIK FRØEN2,5, IDA K. GRAVENSTEEN2,6, MARIETTE DE GROOT-NOORDENBOS2,7, PAUL DE
GROOT , SUE HALE , BELINDA JENNINGS , KAREN MCNAMARA2,11, CARON MILLARD2,12 &
2,8 2,9 2,10

JAN JAAP H. M. ERWICH2,7

1
Maternal and Fetal Health Research Centre, Manchester Academic Health Science Centre, University of Manchester,
Manchester, UK, 2International Stillbirth Alliance, Kansas City, Missouri, USA, 3Stillbirth and Neonatal Death Association
of Ireland (Feileacain), Dublin, Ireland, 4Mater Medical Research Institute and University of Queensland, Brisbane, Queens-
land, Australia, 5Division of Epidemiology, Norwegian Institute of Public Health, Oslo, Norway, 6Institute of Clinical Medi-
cine, University of Oslo, Oslo, Norway, 7Department of Obstetrics and Gynecology, University Medical Center, University
of Groningen, Groningen, the Netherlands, 8Practice for Occupational and Health Psychology, Eelde, the Netherlands,
9
Stillbirth and Neonatal Death Society (Sands), London, UK, 10King Edward Maternity Hospital, Perth, Australia,
11
Anu Research Centre, University College, Cork, Ireland, and 12Sands, St. John’s, Antigua-Barbuda

Key words Abstract

Grief, improving care, perinatal audit, staff
support, stillbirth
Correspondence
Alexander Edward Heazell, Maternal and
Fetal Health Research Group, Research Floor,
St Mary’s Hospital Oxford Road Manchester,
Manchester M13 9WL, UK. E-mail:
alex_heazell@talk21.com
Please cite this article as: Heazell AEP,
Leisher S, Cregan M, Flenady V, Frøen JF,
Gravensteen IK, de Groot-Noordenbos M,
de Groot P, Hale S, Jennings B, McNamara K,
Millard C, Erwich JJHM. Sharing experiences
to improve bereavement support and clinical
care after stillbirth: report of the 7th annual
meeting of the international stillbirth alliance.
Acta Obstet Gynecol Scand. 2013; 92:
352–361.
Received: 14 July 2012
Accepted: 19 October 2012
DOI: 10.1111/aogs.12042
Stillbirth remains a global health challenge which is greatly affected by social
and economic inequality, particularly the availability and quality of maternity
care. The International Stillbirth Alliance (ISA) exists to raise awareness of
stillbirth and to promote global collaboration in the prevention of stillbirth
and provision of appropriate care for parents whose baby is stillborn. The
focus of this ISA conference was to share experiences to improve bereave-
ment support and clinical care. These issues, relevant throughout the globe,
are not discrete but closely interrelated, with both similarities and differences
depending on the specific country and cultural context. Counting stillbirths
and understanding the causes of stillbirth are essential not only for providing
optimal care and support to parents whose babies die, but also for reducing
the future burden of stillbirth. This summary highlights novel work from
obstetricians, midwives, psychologists, parents and peer support organizations
that was presented at the ISA meeting. It covers topics including the bereave-
ment process, peer support for parents, support and training for staff, evi-
dence for clinical care, and the need for accurate data on stillbirths and
perinatal audits. Representatives from the maternity services of the region
presented their outcome data and sharedx bereavement care. Data and devel-
opments in practice within stillbirth and bereavement care must be widely
disseminated and acted upon by those responsible for maternity care provi-
sion, both to prevent stillbirths and to provide high-quality care when they
do occur.
Abbreviations: DPM, dual process model; F eileacain, Neonatal Death
Association of Ireland; ISA, International Stillbirth Alliance; QoL, quality of
life; Sands, Stillbirth and Neonatal Death Society; SNIF, Swedish National
Infant Foundation.

ª 2012 The Authors

352 Acta Obstetricia et Gynecologica Scandinavica ª 2012 Nordic Federation of Societies of Obstetrics and Gynecology 92 (2013) 352–361

Introduction
Stillbirth remains a significant challenge in global public
health. Merely estimating the impact of stillbirth is diffi-
cult because the numbers of stillbirths are not accurately
recorded in low-income countries where the majority of
stillbirths occur. Countries with the highest estimated
incidence of stillbirth are also the most likely to associate
stillbirth with maternal failure or impurity and the least
likely to record stillbirths, to give the stillborn infant a
name, or to provide a burial service (1). Quantifying the
worldwide burden of stillbirth is further hampered by dif-
ferences in the definition employed in different countries.
In the recent Lancet Stillbirth Series, estimates have been
generated for 193 countries for the number of stillbirths
occurring after 28 weeks’ gestation (2). Analysis of these
data show that the five most significant associated condi-
tions of stillbirth worldwide are (i) intrapartum asphyxia,
(ii) maternal infection, (iii) maternal medical conditions
(particularly hypertension and diabetes), (iv) fetal growth
restriction and (v) congenital anomalies (3). Importantly,
these conditions also contribute significantly to maternal
and neonatal death. Therefore, addressing causes of still-
birth will have significant benefits to maternal and neona-
tal health which are addressed in the Millennium
Development Goals 4 and 5.
In low-income settings, the key interventions that
would decrease the incidence of stillbirth are access to
appropriately skilled birth attendants and the provision of
emergency obstetric and neonatal care, and, to a much
lesser extent, detection and management of conditions in
the antenatal period such as diabetes, hypertension and
fetal growth restriction (4). In high-income settings where
intrapartum deaths contribute less than 10% of stillbirths
and suboptimal care is considered contributory in
approximately 40% of stillbirths, the majority of interven-
tions to address stillbirth focus on the preconception and
antenatal period with a focus on reducing obesity, smok-
ing and alcohol use, folic acid supplementation, screening
for fetal growth restriction, prevention of post-term preg-
nancies and conducting high quality clinical audits to
improve practice (5). The series highlights the disparity
in outcomes according to social and racial factors, even
in the world’s richest countries, and calls for policies to
address this disparity as a priority in these settings.
Stillbirth is thus a complex issue which reaches beyond
the traditional boundaries of medicine. At population
level, important factors for stillbirth include medical,
social and societal influences; for individual parents and
their families, stillbirth has physical, psychological and
social consequences. Therefore, it is essential to consider
stillbirth in the context of a multidisciplinary framework
which acknowledges this plurality. The 7th annual
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conference of the International Stillbirth Alliance (ISA)
focussed on bereavement support and clinical care pro-
vided to parents after a stillbirth; it brought together
obstetricians, midwives, parents, psychologists and
researchers to discuss developments in this field and to
develop strategies for improving care after a baby dies. It
was held from 3 to 5 November 2011 at the American
University of Antigua in the West Indies. It was specifi-
cally aimed at caregivers of the Caribbean islands in order
that local initiatives could be supported.
Grieving after stillbirth – how does a
baby’s death affect a family?
Grieving after stillbirth is a highly individual process, for
a family and for the mother and father, grandparents and
siblings. It is not clear whether the traditional model of
grief – a linear process through which bereaved persons
move in a specific sequence – is valid for stillbirth. One
alternative to the traditional conceptual model which may
be more applicable to stillbirth is the dual process model
(DPM) of grief, developed by Stroebe and Schut in the
late 1980s and published in their seminal article on the
model in 1999, “chang(ing)…the direction of bereave-
ment research” (6,7). In the DPM, bereaved persons typi-
cally alternate between two modes: the “loss orientation”
mode and the “restoration orientation” mode (Table 1).
These two “modes” are in some sense opposites, as can
be seen from the following summary of their main char-
acteristics:
The model is an acknowledgement that grief is very
personal, usually experienced in an iterative manner
rather than as a sequence of pre-ordained stages. While
Table 1. Characteristics of the dual-process model of grief. Loss
orientation refers to the concentration on, and dealing with,
processing of some aspect of the loss experience with respect to the
dead person. In contrast, restoration orientation describes focusing on
what needs to be dealt with to restore or adjust to a bereavement
(e.g. the absence of a child) and how it is dealt with (e.g. by avoiding
contact with children).
Loss orientation Restoration orientation
Confrontation of the loss Adjustment to the loss
Talking Evading
“Being” “Doing”
Denial and avoidance of recovery Denial and avoidance of loss
Involvement Distance
Closeness Aloofness
Need for emotional support Need to problem-solve
“Chronic mourning” “Postponed mourning”
Dangers: complaining, Dangers: escapism, distance,
over-involvement, over-control, feeling nothing
drowning in emotion
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all bereaved persons shift between these two modes,
sometimes very rapidly, according to the model everyone
has a preferred mode; some psychologists speak of
“female and male modes of coping with loss”. This can
be a source of tension in mixed-gender relationships in
which both parties are bereaved. It can be helpful if both
parties recognize that grief is experienced and expressed
differently for each person, and that sometimes help for a
bereaved parent must be sought outside the relationship.
Since its inception over two decades ago, the model
has been applied to grief and bereavement in a variety of
contexts, including spousal bereavement (8). In 2008 and
2010, Stroebe published reviews of the model that laid
out, inter alia, suggested directions for further research
and empirical testing of the model’s validity (9,10). Of
greatest relevance to stillbirth, one study focused on the
DPM’s applicability to perinatal-related parental bereave-
ment (11). The study compared the coping strategies of
over 200 bereaved parents and their partners in terms of
the DPM. It found that “loss orientation” was predictive
of negative psychological adjustment, whereas “restoration
orientation” was related to better adjustment. Further-
more, high levels of restoration-oriented coping buffered
the negative effect of high levels of loss orientation on
depression. In the interpersonal context, results indicated
that for men, having a female partner high in restoration-
oriented coping was related to positive adjustment. The
study concluded that “in coping with the loss of their
child, intra-personal as well as interpersonal processes are
relevant for the adjustment process of parents after the
loss of their child”. The application of the DPM to still-
birth-related bereavement was clearly demonstrated
through a role play between Dr. de Groot and one of the
conference attendees, Erica Stewart, a bereaved mother.
Bereavement care – the role of
external support organizations after
a stillbirth
The role of external organizations in enabling parents to
cope with their grief was highlighted by the experiences
of stillbirth support groups: the Swedish National Infant
Foundation (SNIF), the Stillbirth and Neonatal Death
Association of Ireland (Feileacain), the Stillbirth and Neo-
natal Death Society (Sands) UK and Sands Antigua-
Barbuda. Many stillbirth support groups have originated
from bereaved parents forming organizations to deliver
bereavement support; as such they can tap a wealth of
personal experience. SNIF have developed a “help your-
self” method for providing support to bereaved parents.
The core of the method is the establishment and facilita-
tion of small (10–12-person) groups of bereaved parents,
which meet five times for several hours of discussion in
354 Acta Obstetricia et Gynecologica Scandinavica ª 2012 Nordic Federation of Societies of Obstetrics and Gynecology 92 (2013) 352–361
each instance. Facilitated by two trained bereaved parents,
groups focus on one theme per evening, aiming to enable
each group member to express in his or her own words
his/her own experiences. Typical themes include “What
happened when your baby died?”, “What were the reac-
tions of others to your loss?” and “My grief today, and in
five years”. Parental response to this method has been
extremely positive, including from bereaved parents who
at first did not want to attend group meetings at all. In
fact, many groups continue to meet long after the pre-
scribed five sessions are over. While quantitative evalua-
tions of the method have not yet been carried out,
qualitative data indicates that the services provided fill a
gap in bereavement support: “By coming to this program,
I have been able to work through my grief in a way that
no counsellor or psychiatrist could ever do”. Group facili-
tation by persons who are themselves bereaved parents,
the group practice of listening – without interruption –
to the stories of other participants who “have been
through the same thing”, and involving bereaved fathers
in group work appear to be some of the factors for
SNIF’s success. Of note, parents who have “graduated”
from the program not infrequently voice their desire to
become peer supporters themselves “when (they) have
come further in (their) grief”.
The Feileacain, founded by a group of bereaved parents
to fill a gap in bereavement support services in Ireland,
also directs a large proportion of its work to parent sup-
port groups – essentially peer-to-peer support. As with
SNIF, Feileacain peer support meetings help bereaved
parents face common challenges after stillbirth, from the
question of whether to conduct a postmortem to coping
with missed milestones such as the child’s first birthday,
or well-meaning queries on “How many children do you
have?” Feileacain support meetings, each staffed by two
experienced facilitators, emphasizing the provision of a
comfortable and safe venue to encourage conversation.
Facilitators must clarify group members’ roles and man-
age expectations, focus on listening rather than succumb-
ing to the temptation to provide answers and, not least,
ensure confidentiality. Feileacain has found the simple
practice of facilitators’ calling babies by their names to be
very powerful for parents. Providing space and time for
facilitators to debrief following support meetings has also
been important. Feileacain groups evolve over time, often
following a trajectory from an initial focus on sharing
stories of loss to, later, how to address sibling grief or
deal with a subsequent pregnancy.
However, support groups are not for everyone – some
bereaved parents prefer phone support for its anonymity.
Thus, Feileacain provides other services such as telephone
and online support, an annual remembrance service, and
the provision of memory boxes to hospitals, as well as
ª 2012 The Authors

producing and disseminating support leaflets and provid-
ing training for healthcare professionals. Many parts of
the world lack such essential peer-to-peer support ser-
vices, so another of Feileacain’s interests is advising
groups who wish to start their own organizations. Key
ingredients include a committed group of people with
shared experience and the willingness and ability to dedi-
cate a significant and sustained amount of time to the
organization’s operations, and the support of other,
established organizations. In the case of Feileacain this
support came from Sands UK. New organizations must
decide on the services they wish to provide, whether they
will be led by parents or professionals, and what types of
losses are to be supported (for example, only second and
third trimester losses, or only recent losses). It is crucial
that new organizations consider such organizational issues
as who will actually provide the services, how the services
will be publicized, and whether the services will be able
to meet parent expectations.
Feileacain also emphasizes the importance of each
organization’s being able to respond to the particular
context in which it is founded. In Ireland this included
the stigma of and secrecy surrounding stillbirth. A special
focus has therefore been supporting the “long-ago
bereaved” with such specific services as help in locating
old burial spots and in registering long-ago stillbirths.
The role of professionals after
stillbirth
The interaction between health professionals and bereaved
parents plays an important role in families’ ability to cope
with their bereavement. Ideally, all parents who experi-
ence a stillbirth should be offered the highest standard of
compassionate care. Sadly, this does not seem always to
be the case, with 52% of bereaved parents having a poor
understanding of the events surrounding the stillbirth
and 71% dissatisfied with the information they had been
given (12,13). Finding the cause for the stillbirth is
reported as an important goal for parents (14). However,
the interactions between professionals and parents and
how this impacts on parents’ perceptions of care and
their decision-making process regarding investigations
into causes is incompletely understood. Preliminary anal-
ysis of data from 21 semi-structured interviews with fami-
lies across the United Kingdom suggests that parents
viewed their communication with professionals in hospi-
tal as crucial to their ability to cope with the death of
their baby (15). Subthemes included the impact of emo-
tional distress on decision making, the wider impact of
the loss on families, issues related to parents’ separation
both from their child and from other parents, a need for
answers, and a lack of care from health professionals
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when it was needed. Parents provided valuable informa-
tion on how potential problems might be addressed; a
central theme was parents’ need for emotional engage-
ment with staff. Harmful interactions with professionals
appeared to have long-term negative consequences for
parents’ grieving. Conversely, parents who established
trusting relationships with healthcare workers described
the difference that doctors, midwives, counselors and
chaplains can make. Parents also valued honesty and
directness. Parents in this study urged healthcare profes-
sionals to act as informed guides to help in navigating
the complicated decisions that parents must make in the
midst of their shock and grief.
It is well established that stillbirth profoundly affects
mothers’ psychological well-being in the short-term
(16–18). This extends to an increased risk of anxiety and
depression during the first months postpartum compared
with women with a live birth (19). However, the level of
psychological distress in a cohort of mothers decreases
after the first year (20). Less is known about the effect of
stillbirth on long-term quality of life (QoL) and depres-
sion. The FRIQ (“Intrauterine fetal death – risk factors,
incidence and impact on quality of life”) study is a hospi-
tal-based case-control study in Norway. One objective of
the FRIQ study was to investigate QoL, depression and
well-being in women with a history of stillbirth
5-18 years after the event. In all, 106 women and 262
controls completed a questionnaire that included socio-
demographic variables, health-related variables and repro-
ductive history, the QoL Index (QLI), the Center for
Epidemiological Studies Depression Scale (CES-D) and
the General Health Questionnaire 20. The main conclu-
sion is that women with stillbirth share the same level of
long-term QoL, well-being and global depression as
women with live births only, when adjusted for possible
confounders. In this study population the majority of
women (91.1%) received short-term support including
peer bereavement support, bereavement counseling, or
consultations with a doctor or religious leader. To date,
this study did not compare the outcomes of women who
received no short-term support with those who did.
Medical management of stillbirth
Medical management of stillbirth usually focuses on the
delivery of the infant and provision of investigations to
determine the cause of the stillbirth. There is a paucity of
evidence to direct clinical management. Guidance from
the Royal College of Obstetricians and Gynaecologists,
UK has few recommendations supported by Grade “A”
evidence, with the majority being Grade “C”,”D” or
“good practice points” (21). This is also the case for other
published guidance from the American College of
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Obstetricians and Gynecologists and the Perinatal Society
of Australia and New Zealand (22). The absence of robust
evidence is reflected by the fact that no guidelines are the
same. However, unless maternal condition necessitates
cesarean delivery (such as massive maternal bleeding with
maternal compromise) or vaginal delivery is contraindi-
cated (such as persistent transverse lie at term), vaginal
delivery is preferred. Labor may be induced by various
means including physical dilatation of the cervix and
pharmacological agents (many of which are not specifi-
cally licenced for the induction of labor after stillbirth).
The role of cesarean birth by maternal request after the
diagnosis of fetal death in utero has not been formally
explored.
Investigation of stillbirth is recommended by all pub-
lished guidelines (American College of Obstetricians and
Gynecologists, Perinatal Society of Australia and New
Zealand and Royal College of Obstetricians and Gynaecol-
ogists). The reasons for this are threefold: (1) women
who have had one stillbirth have a 2–10-fold increase in
perinatal mortality compared with those who have had
only live children (23,24), and understanding the cause of
stillbirth may (2) facilitate grieving and (3) contribute to
the body of knowledge regarding the cause of stillbirth. A
postmortem examination (autopsy) is the single most
useful and informative investigation that can be per-
formed in the postnatal period to ascertain the cause (or
rule out causes) of stillbirth. Studies estimate that when
autopsy is performed it provides information in 57–74%
of examinations, and in 9–34% of stillbirths this informa-
tion was only identified by autopsy (25–27). Placental his-
tological examination provides information in 58–84% of
cases; in 16–19% of these cases, this was the only source
of information regarding the cause of death (28–30).
Placental pathology reduces the proportion of unex-
plained stillbirths (31). It is clear that both autopsy and
placental pathology are more likely to yield clinically
important results when performed by an expert pediatric
or perinatal pathologist (32,33). Chromosomal analysis
identifies abnormalities in 5–14% of cases (34,35). The
efficacy of other recommended investigations including
glycosylated hemoglobin, bile acids and thrombophilia
screen identify abnormalities in <5% of cases, but the
relationship with the cause of death is often unclear.
Studies suggest that a structured approach finds a pre-
sumptive cause of death in 91% of cases (36). A selective
approach based on presenting clinical scenario, endemic
conditions and available resources was presented (37);
however, the evidence underpinning this approach or that
of a more comprehensive unselected approach is limited
and further research is urgently needed.
Despite the effectiveness of perinatal autopsy the pro-
portion of parents consenting to this examination in the
356 Acta Obstetricia et Gynecologica Scandinavica ª 2012 Nordic Federation of Societies of Obstetrics and Gynecology 92 (2013) 352–361
UK has fallen from 57% in 2000 to 43% in 2008, with
similar reductions seen in other high-income countries
(38,39). There is little guidance for staff on how and
when to discuss perinatal autopsy and it is possible that
individual clinicians’ attitudes to this investigation affect
the uptake rates. Several related anonymized question-
naire studies, originally developed by the Australian and
New Zealand Stillbirth Alliance (stillbirthalliance.org.au),
are underway to investigate staff knowledge and attitudes
regarding postmortem in the UK, Republic of Ireland,
Australia and New Zealand. The preliminary results of
the studies in the UK and the Republic of Ireland were
presented at the conference. Thus far, results show the
majority of staff feel they have received no training to
date (22%) or are unhappy with the little training they
have received (29%). Sixty percent of staff members were
unhappy with the quality of guidelines available at a local
level to aid them in gaining parental consent for post-
mortem. The most significant perceived barriers to
obtaining consent were lack of rapport with families
(65%), parental emotional distress (86%), staff workload
(65%) and the long time taken to obtain results from
autopsy (66%). Ten percent of staff believed that a post-
mortem was not appropriate if the baby had to be trans-
ferred to an external unit. These studies are due to be
extended to the whole of the Republic of Ireland. These
results are similar to that from Australia and the UK
(13,40), although a Swedish study from a cohort with a
high rate of autopsy (83%) found that parents were often
satisfied with their decision and a significant proportion
found contact with the pathologist who performed the
examination was helpful (41). It is hoped that interna-
tional comparisons will aid understanding of the decreas-
ing rates of autopsy after stillbirth and that lessons may
be learnt from countries performing better.
Impact of stillbirth on care providers
Providing care to women (and their families) who experi-
ence a perinatal death is at times a challenging and emo-
tional role for health care professionals, yet there is
limited literature on the impact on staff of providing care
during this situation. Although there have been numerous
studies on preparing nurses to support terminally ill
patients and their families, and to a lesser extent on
neonatal nurses’ perceptions of end of life care, there is
limited literature describing midwives’ awareness of and
behavior and attitudes towards perinatal loss care. Man-
der (42) explored the stressors midwives associated with
perinatal loss care and identified four main factors:
difficulty dealing with grieving parents, lack of a happy
outcome, mothers’ anger and limited resources. Later
work by Gardner (43) demonstrated commonality
ª 2012 The Authors

between midwives and nurses working in the USA, Eng-
land and Japan, with many expressing that they lacked
mentored experience, communication skills, knowledge,
and thus confidence and competence in providing sensi-
tive care to families whose baby has died. Within the
same care domain, Gold et al. (44) claimed that obstetri-
cians in the USA reported that caring for a patient with a
stillbirth took a large emotional toll on them personally,
and nearly one in 10 obstetricians reported they had con-
sidered giving up obstetric practice because of the emo-
tional difficulty in caring for a patient with a stillbirth.
As a result, training packages have been developed to
support staff when providing care to families experiencing
perinatal death. Sands provide training programs in
several countries including the UK and Australia. An
example of a highly successful training program is that
conducted at King Edward Memorial Hospital in Perth,
Western Australia, sponsored by the Grief and Loss Advi-
sory Council. This training program includes modules
that focus on family care, physical care, psychosocial care,
cultural care and, importantly, a module on “Self Care”
which focuses on care of the person (staff) him or herself.
This module identifies the various factors that influence
“self” in the work place, our personal responses, the
cumulative effect of experience, and the often difficult
task of recognizing signs of “burn out”. The module tea-
ches strategies for identifying what is helpful in the work
place, and what could be more helpful. Work–life balance
is discussed and various activities that may improve self
care and balance are recognized and shared as a group.
Although this training program has a dedicated perinatal
loss module, this is unusual, and the findings of a study
by Jennings (45) suggest that midwives continue to need
specific and ongoing education, skills and support to cope
with the emotionally charged role of caring for women
and families suffering perinatal loss.
Determining the causes of stillbirth
and perinatal audit
Data for effective stillbirth prevention are suboptimal.
The Lancet’s Stillbirth Series has highlighted the need to
address this unacceptable situation of poor data quality
globally (3–5). Even the most fundamental data – accu-
rate numbers – is lacking. As part of the stillbirth series,
The Lancet published the best estimates of stillbirth
numbers to date: a worldwide total of 2.65 million late
gestation stillbirths (28 weeks or more) annually (2).
However, due to inadequate data, this is a best estimate
only and the true number could lie between 2 and 4 mil-
lion stillbirths. The uncertainty regarding the number of
stillbirths was most pronounced in the poorest settings,
for example in Afghanistan, with an estimated late
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gestation annual stillbirth rate of 29.4/1000 total births
for a total of 38 000 stillbirths, yet a range from 24 000
to 72 000 (3). Further, the lack of data on earlier gesta-
tion stillbirths (<28 weeks) results in underestimates of
actual stillbirth numbers by around 40% (5). Efforts to
improve registration of stillbirths are urgently required.
Under-registration due to local beliefs and taboos pose a
significant barrier to improving data. Efforts to engage
communities to improve care for women and reduce
stigma around stillbirth are essential and may result in
improved data on numbers (1). Early registration of preg-
nancies, before the perinatal period, may improve still-
birth registration and may also enable prevention efforts
during antenatal care (46).
Inconsistent definitions for registration and reporting
of stillbirths, largely based on varying gestational age and
birthweight criteria, are another major barrier to achiev-
ing quality data (5). Even in the world’s richest countries,
definitional issues preclude meaningful analyses; for
example in the USA, nine different definitions are used
(46). Recent data have shown that registration by
birthweight alone is associated with lower stillbirth rates
than registration by gestational age, highlighting the
importance of standard definitions. Further, cause of
death data differ according to definition; reports includ-
ing higher proportions of early stillbirths typically show
more congenital anomalies, infections and placental
abruptions (46).
Data on causes of stillbirth globally are limited. Cause
of death data for stillbirths derived from vital statistics
(in countries where these data are collected) are notori-
ously inaccurate, resulting in a high proportion of unex-
plained stillbirths (around 60%) (47). Completion of
death certificates prior to the results of investigation and
audit being finalized and inaccuracies introduced due to
lack of supervision of junior staff completing the docu-
mentation are thought to be contributing factors (48).
When stillbirths are adequately investigated, reviewed and
classified, placental pathology is invariably identified as a
major causal factor and the proportion of unexplained
stillbirths is reduced to around 10–30% (5). Infection and
maternal conditions such as hypertension and diabetes
play an important role in low and middle income coun-
tries. However, the single most important avoidable factor
contributing to stillbirth globally is inadequate intrapar-
tum care through lack of access to skilled birth attendants
and emergency obstetric care. Even in high income
country settings, substandard care makes a significant
contribution to stillbirth (5). Data collection for stillbirths
must include, wherever possible, the presence of substan-
dard care.
Inadequate data collection and investigation at the time
of birth limits the value of classification which aims to
357
Conference Report
identify priority areas for prevention. A minimum dataset
and essential investigations as a standard for all settings
have been proposed (37,46). As a large proportion of
stillbirths occur in settings where the mother has not
received antenatal care and gives birth at home without a
skilled attendant, verbal autopsy offers a potential source
of helpful data (46). Advances in verbal autopsy for neo-
natal causes of death have resulted in improved data; the
same advances are required for stillbirth (3).
The lack of an internationally accepted classification
system is a significant barrier to stillbirth prevention. The
ISA is undertaking a collaborative study towards a univer-
sal classification (49). Such a system must be compatible
with the planned revision of the international classifica-
tion of disease system which aims to enhance global still-
birth code of death data.
Adequate data on stillbirths are the cornerstone of suc-
cessful prevention strategies, enabling analysis and moni-
toring of quality of care and identification of important
areas for future research. The lack of improvement in
stillbirth rates will persist until data are improved. Causes
and risk factors for stillbirth are similar to those resulting
in other adverse pregnancy outcomes for mothers and
newborn deaths and, therefore, to ensure maximum bene-
fit across the spectrum of perinatal care, integrated data
collection and classification systems are required (4).
Perinatal audit is an essential tool to address the issues
highlighted above (5). The purpose of perinatal audit is
to review the case and care provided and where possible
to determine the cause of the stillbirth. Identifying sub-
standard care factors can lead to suggestions for practice
improvements and how these could be put into practice
(50–52). Understanding the causes of stillbirth allows ser-
vices to develop to address specific populations’ needs for
preventing stillbirth. In many settings there have been
substantial changes in perinatal and maternal mortality
after the introduction of robust audits (53–57). Therefore,
perinatal audit is essential at many different levels from
individual maternity units up to national datasets. Peri-
natal audit describes a dynamic process, usually termed
the audit spiral, in which there are ongoing cycles of peri-
natal audit, development of recommendations, and
implementation, which is then re-evaluated. This should
be regarded as routine practice for maternity services.
Current approaches to perinatal audit are varied which
detracts from their efficacy. First, it is essential that all
cases of stillbirth are recorded, which in low-income
settings represents a significant challenge. Subsequently,
recorded cases should be further identified and relevant
details extracted from the medical notes. In the most
detailed reviews, case notes may be anonymized for a
confidential enquiry, where a team of independent experts
review the narrative of the case, classifying whether the
358 Acta Obstetricia et Gynecologica Scandinavica ª 2012 Nordic Federation of Societies of Obstetrics and Gynecology 92 (2013) 352–361
care delivered is of optimal standard or whether different
care may have prevented the stillbirth. Alternatively, cases
could be anonymized and presented to a multidisciplinary
group of the local care-givers, where the cause of death is
agreed and recommendations made. Ideally, case reviews
should be led by an independent chairperson, whose role
is most valued by respondents in evaluations of audits in
the Netherlands (58). In Australia, an educational pro-
gram to implement national guidelines of perinatal audit
and bereavement care (IMPROVE – IMproving Perinatal
review and Outcome via Education) is very well received
by maternity care clinicians (59).
An organized approach as outlined above may identify
recurrent themes which may be targeted for improve-
ment, e.g. malaria, small for gestational age infants,
diabetes, hypertension, or decreased fetal movements.
Furthermore, this approach facilitates analysis of substan-
dard factors in care which are graded with respect to their
impact on cases like unwanted delays in diagnosis or
treatment of maternal illness, failure to detect fetal
growth restriction or inadequate fetal monitoring. Vari-
ous international series have found substandard care to
be present in 25% of cases of stillbirth (53,54). Changes
are best introduced using a well-organized plan like the
SMART approach: interventions are Specific, Measurable,
Acceptable, Realistic and Time-restricted (60–63).
Priorities for improving bereavement
support and clinical care
Stillbirth remains a global health challenge, ranging from
the collection of basic information to count the number
of these deaths to implementation of programs to better
educate and support women and care providers. Irrespec-
tive of location, caring for parents and learning lessons
after the death of their child is challenging; the clinical
role of professionals must incorporate bereavement sup-
port, provision of investigations to determine the cause of
stillbirth and ongoing audit to determine whether care
was of an appropriate standard and what action may be
taken to reduce the number of stillbirths in future.
This ISA meeting highlighted priorities to improve
clinical care, beginning with the development of accurate
datasets, which in low-income countries starts with
counting the number of stillbirths and in high-income
settings requires robust perinatal audit combined with
appropriate investigation to precisely classify causes of
stillbirth. This process can be supplemented with confi-
dential enquiries to evaluate whether care was suboptimal.
To achieve a reduction of stillbirths, it is essential that
key elements and messages are defined, disseminated, and
acted upon by regulatory bodies and those in government
responsible for maternity care.
ª 2012 The Authors

Bereavement support also requires recognition of still-
birth as an important event; countries which do not count
stillbirths frequently do not recognize the baby’s identity
by giving a name or funeral. The unique loss of a baby
and the individual nature of the bereavement process were
highlighted at this meeting; this merits dissemination to a
wide audience so that the experience of professionals can
help their peers to better support parents who are
bereaved. The provision of bereavement support is not
something that most professionals can just “do”; as with
other skills, bereavement support requires training and the
recognition that staff must have adequate time and sup-
port to provide emotional and psychological care. The
importance of parental peer support, particularly in deter-
mining long-term psychological and social outcomes,
should be acknowledged and, where possible, peer-support
organizations should be developed and fostered by cur-
rently active bodies. Education and training of maternity
staff remain priorities in both bereavement and clinical
care; some excellent training programs have been devel-
oped and should be widely promoted. In addition, more
research is required to define the best models of care.
Funding
No specific funding.
Acknowledgments
We thank A. Haaker for translations from the Swedish of
the SNIF’s “Evaluation, Parents’ Dialogue Group,” Stock-
holm, January–March 2011.
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