ArticlePDF Available

The perinatal bereavement project: development and evaluation of supportive guidelines for families experiencing stillbirth and neonatal death in Southeast Brazil—a quasi-experimental before-and-after study

Authors:

Abstract

Background For most parents, getting pregnant means having a child. Generally, the couple outlines plans and has expectations regarding the baby. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. Validating the grief of these losses has been a challenge to Brazilian society, which is evident considering the childbirth care offered to bereaved families in maternity wards. Positively assessed care that brings physical and emotional memories about the baby has a positive impact on the bereavement process that family undergoes. Therefore, this study aims to assess the effects supportive guidelines have on mental health. They were designed to assist grieving parents and their families while undergoing perinatal loss in public maternities in Ribeirão Preto, São Paulo state, Brazil. Method A mixed-methods (qualitative/quantitative), quasi-experimental (before/after) study. The intervention is the implementation of bereavement supportive guidelines for women who experienced a stillbirth or a neonatal death. A total of forty women will be included. Twenty participants will be assessed before and twenty will be assessed after the implementation of the guidelines. A semi-structured questionnaire and three scales will be used to assess the effects of the guidelines. Health care professionals and managers of all childbirth facilities will be invited to participate in focus group. Data will be analyzed using statistical tests, as well as thematic analysis approach. Discussion The Perinatal Bereavement guidelines are a local adaptation of the Canadian and British corresponding guidelines. These guidelines have been developed based on the families’ needs of baby memories during the bereavement process and include the following aspects: (1) Organization of care into periods, considering their respective needs along the process; (2) Creation of the Bereavement Professional figure in maternity wards; (3) Adequacy of the institutional environment; (4) Communication of the guidance; (5) Creation of baby memories. We expect that the current project generates additional evidence for improving the mental health of women and families that experience a perinatal loss. Trial registration RBR-3cpthr Plain English summary For many couples, getting pregnant does not only mean carrying a baby, but also having a child. Most of the time, the couple has already made many plans and has expectations towards the child. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. In Brazilian culture, validating this traumatic grief is very difficult, especially when it happens too soon. The barriers can be noticed not only by the way society deals with the parents’ grief, but also when we see the care the grieving families receive from the health care establishment. Creating physical and emotional memories might bring the parents satisfaction regarding the care they receive when a baby dies. These memories can be built when there is good communication throughout the care received; shared decisions; the chance to see and hold the baby, as well as collect memories; privacy and continuous care during the whole process, including when there is a new pregnancy, childbirth and postnatal period. With this in mind, among the most important factors are the training of health staff and other professionals, the preparation of the maternity ward to support bereaved families and the continuous support to the professionals involved in the bereavement. This article proposes guidelines to support the families who are experiencing stillbirth and neonatal death. It may be followed by childbirth professionals (nurses, midwives, obstetricians and employees of a maternity ward), managers, researchers, policymakers or those interested in developing specific protocols for their maternity wards.
Salgadoetal. Reprod Health (2021) 18:5
https://doi.org/10.1186/s12978-020-01040-4
STUDY PROTOCOL
The perinatal bereavement project:
development andevaluation ofsupportive
guidelines forfamilies experiencing stillbirth
andneonatal death inSoutheast Brazil—a
quasi-experimental before-and-after study
Heloisa de Oliveira Salgado1* , Carla Betina Andreucci2, Ana Clara Rezende Gomes1 and João Paulo Souza1
Abstract
Background: For most parents, getting pregnant means having a child. Generally, the couple outlines plans and has
expectations regarding the baby. When these plans are interrupted because of a perinatal loss, it turns out to be a
traumatic experience for the family. Validating the grief of these losses has been a challenge to Brazilian society, which
is evident considering the childbirth care offered to bereaved families in maternity wards. Positively assessed care that
brings physical and emotional memories about the baby has a positive impact on the bereavement process that fam-
ily undergoes. Therefore, this study aims to assess the effects supportive guidelines have on mental health. They were
designed to assist grieving parents and their families while undergoing perinatal loss in public maternities in Ribeirão
Preto, São Paulo state, Brazil.
Method: A mixed-methods (qualitative/quantitative), quasi-experimental (before/after) study. The intervention is the
implementation of bereavement supportive guidelines for women who experienced a stillbirth or a neonatal death.
A total of forty women will be included. Twenty participants will be assessed before and twenty will be assessed after
the implementation of the guidelines. A semi-structured questionnaire and three scales will be used to assess the
effects of the guidelines. Health care professionals and managers of all childbirth facilities will be invited to participate
in focus group. Data will be analyzed using statistical tests, as well as thematic analysis approach.
Discussion: The Perinatal Bereavement guidelines are a local adaptation of the Canadian and British correspond-
ing guidelines. These guidelines have been developed based on the families needs of baby memories during the
bereavement process and include the following aspects: (1) Organization of care into periods, considering their
respective needs along the process; (2) Creation of the Bereavement Professional figure in maternity wards; (3)
Adequacy of the institutional environment; (4) Communication of the guidance; (5) Creation of baby memories. We
expect that the current project generates additional evidence for improving the mental health of women and families
that experience a perinatal loss.
© The Author(s) 2021, corrected publication 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0
International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you
give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes
were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated
otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not
permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To
view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver
(http:// creat iveco mmons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a
credit line to the data.
Open Access
*Correspondence: hellosalgado@gmail.com
1 Department of Social Medicine, Ribeirão Preto Medical School,
University of São Paulo, Avenida dos Bandeirantes, 3900, Monte Alegre,
Ribeirão Preto, SP 14049-900, Brazil
Full list of author information is available at the end of the article
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 2 of 17
Salgadoetal. Reprod Health (2021) 18:5
Background
e death of a baby during pregnancy, birth or postpar-
tum is a traumatic experience to a woman and her fam-
ily [1, 2]. However, it may be also a traumatic experience
to the attending health care workers [2, 3]. Several fac-
tors make this a complex and marginalized issue, putting
it at the bottom of the political agenda: stillbirths’ rates
are not included in the Millennium Development Goals,
nor tracked by the UN, nor in the Global Burden of Dis-
ease metrics [4], making it an invisible issue. Besides that,
miscarriage, stillbirth and neonatal death lead to parental
bereavement, resulting in a complex and eventually trau-
matic experience [5], a challenging issue to health pro-
fessionals and to the family to cope. According to Parkes
[6] “For most people in the Western world, the death of a
child is the most tormenting and painful source of grief.
Trial registration RBR-3cpthr
Plain English summary: For many couples, getting pregnant does not only mean carrying a baby, but also having a
child. Most of the time, the couple has already made many plans and has expectations towards the child. When these
plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family.
In Brazilian culture, validating this traumatic grief is very difficult, especially when it happens too soon. The barriers
can be noticed not only by the way society deals with the parents’ grief, but also when we see the care the grieving
families receive from the health care establishment.
Creating physical and emotional memories might bring the parents satisfaction regarding the care they receive when
a baby dies. These memories can be built when there is good communication throughout the care received; shared
decisions; the chance to see and hold the baby, as well as collect memories; privacy and continuous care during the
whole process, including when there is a new pregnancy, childbirth and postnatal period. With this in mind, among
the most important factors are the training of health staff and other professionals, the preparation of the maternity
ward to support bereaved families and the continuous support to the professionals involved in the bereavement.
This article proposes guidelines to support the families who are experiencing stillbirth and neonatal death. It may be
followed by childbirth professionals (nurses, midwives, obstetricians and employees of a maternity ward), managers,
researchers, policymakers or those interested in developing specific protocols for their maternity wards.
Keywords: Stillbirth, Perinatal loss, Neonatal loss, Perinatal bereavement, Neonatal bereavement, Maternal grief,
Bereavement protocol, Humanized birth assistance
RESUMO
Contexto: Uma assistência avaliada positivamente por mães e pais que passaram pela perda perinatal permite a
criação de memórias físicas e afetivas do bebê e possuem efeitos positivos no processo de luto da família. Este estudo
avaliará os efeitos de uma diretriz de acolhimento na saúde mental de mulheres em processo de luto perinatal e
neonatal em maternidades públicas do município de Ribeirão Preto (SP, Brasil).
Método: Estudo de métodos mistos (quantitativo e qualitativo), quase-experimental (antes e depois). A intervenção
é a implementação de diretrizes de acolhimento ao luto de mulheres que tiveram um natimorto ou óbito neonatal.
Um total de quarenta mulheres serão incluídas. Vinte participantes serão avaliadas antes, e vinte após a implemen-
tação da diretriz de acolhimento nas instituições. Serão aplicadas três escalas e uma entrevista semiestruturada para
avaliar os efeitos da diretriz. Profissionais da saúde e gestores serão convidados a participar de grupos focais. Os dados
serão analisados por meio de testes estatísticos, e sob a metodologia de análise temática. A diretriz de acolhimento
contará com material baseado em diretrizes canadense e britânica.
Discussão: As diretrizes brasileiras de luto perinatal propostas são uma adaptação local das diretrizes canadense
e britânica. Baseamo-nos na necessidade da família por memórias físicas e afetivas da criança morta para facilitar a
vivência do processo do luto. Elas incluem os seguintes aspectos: (1) organização dos períodos da assistência a partir
de suas respectivas necessidades, (2) criação do papel do Profissional do Luto, (3) ambientação das instituições, (4)
disseminação das diretrizes e (5) criação de memórias do bebê. Espera-se que o projeto gere evidências adicionais
para melhorar a saúde mental de mulheres e famílias que vivenciam uma perda perinatal.
Registro do estudo: RBR-3cpthr.
Palavras‑chave: Óbito fetal, Óbito perinatal, Óbito neonatal, Luto gestacional, Luto perinatal, Luto neonatal, Luto
materno, Luto parental, Protocolo de luto perinatal, Humanização da assistência ao parto
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 3 of 17
Salgadoetal. Reprod Health (2021) 18:5
Secondly, the belief the death of a child during preg-
nancy or after birth would be less difficult to deal with
compared to the death of an older child is not true [1].
Actually, the main difference between these two situ-
ations is that society does not acknowledge perinatal
losses; conversely, society minimizes it, makes it invisible
and silences the experience parents are going through.
is kind of grief is named disenfranchised grief, known
as “(…) a loss that is not or cannot be openly acknowl-
edged, publicly mourned, or socially supported” (Doka,
1989) [7]. erefore, parents do not have their feelings
of grief, sorrow, emptiness and helplessness socially vali-
dated [8]. Last but not least, parents, families and health
care professionals do not expect pregnancy interruption,
or a baby´s sudden death, which turns it in a more trau-
matic and difficult to cope situation [6].
It is estimated that a total of 2.6 million stillbirths
took place globally in 2016 [9], and the estimates could
be even higher considering underreporting of fetal
death, and even higher if including perinatal deaths
[3, 4]. e numbers by themselves make the issue a
global priority. Nevertheless, they are just the tip of the
iceberg.
A perinatal death impacts parents’ mental health
and may trigger depressive symptoms, anxiety, post-
traumatic stress disorders, suicidal ideation, panic and
phobias [10]. It has also consequences in the social and
economic spheres, with family crises, occupational diffi-
culties and problems regarding high health care costs [3].
Women who had a stillborn baby may express guilt
and question their competence for bearing a healthy
baby. Besides, not only the grieving process may last for
months and years, but it also impacts subsequent preg-
nancies [10, 11].
Given the importance of physical and mental health
for women who are undergoing this process, health care
professionals have to consider their feelings, helping
them cope with the guilt and relieve negative emotions
[12]. Likewise, the fact that caring for bereaved parents
brings additional stress to the health care staff must be
taken into consideration [5]. It is difficult for the staff to
deal with negative outcomes in maternity wards, espe-
cially when there are no specific institutional protocols
[13]. To be able to offer a better assistance, the profes-
sional also needs comfort [5], training, debriefing and
professional support [2].
Guidelines and regimentation regarding pregnancy
loss, stillbirth or baby death aren´t a new issue. In the
UK, Sands (Stillbirth & Neonatal Death Charity)—a
charity1 that works with grieving families and health
care professionals published a very complete docu-
ment [14] about this issue. Canada [15] and Australia
& New Zealand [16], among other countries, also have
their own and specific guidelines and France2 has spe-
cific laws. ose documents recognize the importance
of late children, and ensures this care has permanent
effects [1].
Until now, Brazil had sparse literature about this sub-
ject. Recently, a book based on the Canadian guideline
which orients health care providers was published [17].
Research work was also conducted: a study about com-
plicated grief comparing Brazilian and Canadian women
who had lost their babies found that Canadians undergo
a less complicated bereavement process than Brazilian
women, suggesting that professional supporting bereave-
ment groups, which is an incipient culture in Brazil,
could had made de difference [18].
A recent Brazilian study brought to light the unrecog-
nizable pain of fathers that experienced perinatal losses
[19], discussing the male perspective. Another study
from the same group highlighted lactation in the context
of perinatal loss [20]. e latter is an important issue in
Brazil, once pharmacological lactation suppression is
usually the only available option offered to women. Pre-
liminary discussion of e Perinatal Bereavement Project
led to a publication in a nationwide circulation news-
paper including several narratives of obstacles grieving
mothers came across while trying to donate breastmilk3.
Both the media report and the narratives from the book
“Como Lidar: Luto Perinatal” [17] surfaced women´s
understanding that donating breastmilk could help them
cope with the loss of their babies.
In the 2000 document “Managing Complications in
Pregnancy and Childbirth: A guide for midwives and
doctors” (reprinted in 2007), the WHO presented princi-
ples to be considered when a baby dies, such as to avoid
maternal sedation, to encourage women seeing and hold-
ing their babies, to collect babies’ mementos, among oth-
ers [21].
In 2019, the action “Why we need to talk about los-
ing a baby” was launched [22], aiming to turn miscar-
riage, stillbirth and neonatal death visible worldwide, as
well as to depict the need for best practices and skilled
professional healthcare. e initiative was grounded on
women´s experiences of perinatal losses and epidemio-
logical data, and proposed the end of “the unaccepta-
ble stigma and shame women face after baby loss” [22],
claiming for empathy, respect and support during the
care for those women. is is the beginning of a very
important conversation about supportive guidelines for
families experiencing stillbirth and neonatal death.
e development of evidence-based protocols may
positively impact the health of parents who under-
went perinatal loss. is protocol must be grounded
on evidence provided by the hospital and health care
professionals, and it must focus on creating memories
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 4 of 17
Salgadoetal. Reprod Health (2021) 18:5
regarding the late baby. A North American study exam-
ined 40 women who had a miscarriage between 12 and
20weeks, and received support based on mediating pro-
tocols [23]. After the interventions, they felt diminished
despair and reported feeling cared for and assisted. e
findings may probably apply to pregnancy losses regard-
less of gestational age.
When a baby dies or a pregnancy is lost, parents expe-
rience multiple losses, such as the plans they have made
for the live baby, and the dreams and expectations they
had towards growing a family. Death also alters parents’
previous expectations about parenthood [15]. If we look
to parents’ bereavement through the lens of Rando’s the-
ory (1993) [24], “e Six ‘R’ Processes of Mourning”, we
can find in the third process, “recollecting and re-expe-
riencing the deceased and the relationship” huge difficul-
ties for parents, due to the scarce or even absent actual
memories of the baby who died, or of the lost preg-
nancy [15]. With this in mind, collecting memories is a
key point within comprehensive perinatal bereavement
guidelines.
Additionally, performing farewell rituals and facing
grief in a realistic way are key aspects to cope with death:
“Seeing and holding a live baby right after the birth is a
normal parental response. Seeing and holding a stillborn
baby is also a normal response, and there is much evi-
dence showing that it can be a valuable and cherished
experience” [25]. A 2015 systematic review analyzed
health outcomes associated with parents who could see
and hold their stillborn children. Results revealed that
allowing families to have physical contact with their chil-
dren is beneficial, which opposes previous concepts by
which health care professionals should discourage such
behavior [26].
Locally, there is evidence in national studies corrobo-
rating the importance of having contact with the baby,
even after death. Parents mentioned the wish to hold the
child close. ey also reported that their pain was dimin-
ished due to this incomparable and fundamental experi-
ence [27]. Another national investigation concludes that
rituals that included naming, seeing and touching the
baby, as well as having funeral services, contributed to a
healthy mourning [28].
In order for health care professionals to guarantee
adequate assistance to bereaved parents, it is necessary
that they are emotionally and technically trained and
equipped [18]. Dealing with women suffering from the
loss of a child can pose an enormous challenge, consider-
ing the cultural and personal uniqueness of each one of
them [2932]. Notably, taking care of the team enables
Fig. 1 Supporting guidelines: stillbirth and perinatal death
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 5 of 17
Salgadoetal. Reprod Health (2021) 18:5
the preservation of the continuity and quality of future
care insituations of loss [31, 32].
Research question
Do bereavement guidelines designed to assist parents
who are experiencing stillbirth or neonatal death in a
Brazilian childbirth facility promote supportive care
that provides a healthy bereavement experience for the
woman and her family?
Underlying hypotheses
is investigation presupposes that local institutional
protocols developed from bereavement-supportive
guidelines may offer better assistance in the perinatal loss
scenarios. It is based on the assumption that the physical
and emotional care, as well as the moments spent with
the baby and the collection of mementos, enhance the
chances of a healthy bereavement experience.
Conceptual framework
e document “Pregnancy loss and the death of a baby:
Guidelines for professionals—4th Edition” [14] published
by SANDS was used to outline the conceptual frame-
work for the present study. e authors considered that
the main prerequisites for offering supportive care to
bereaved parents are time, training and support. Good
communication, shared decision and individual care
are important elements to provide high quality grieving
assistance. ese are the grounding aspects for support-
ing guidelines and, for this reason, are on the top of the
conceptual theoretical matrix, according to Fig.1.
Initially, the first level of the matrix contemplates the
work with staff and health care professionals. It involves
three elements concerning professional qualification,
meeting professionals’ emotional needs (including psy-
chological support) and an effective and efficient staff
communication. Considering the Brazilian scenario,
where guidelines and orientation are needed, the follow-
ing tripod is significantly important to outline a starting
point for planning a supportive bereavement guideline:
(1) prioritize initial capacitation regarding the guide-
lines and situation management; offer continuous devel-
opment to both qualified and novice staff members so
all are aligned with the care model to be followed; (2)
understand that the health care professionals are above
all humans and, therefore, subjected to grief, death and
bereavement in their professional and private lives. ey
may also be more affected by a grief situation while assist-
ing patients. Consequently, they need institutional space
to address their own emotional needs. With this in mind,
the Bereavement Professional is allocated to provide care
and sensitive listening without any judgment. is action
aims to meet the professional/staff needs; (3) offer good
communication, among professionals and among staffs
who will also provide the families good communication.
is is the core aspect to ensure parents are being given
what they need during the bereavement process. Good
communication consists of establishing and following
protocols with which the whole staff is aligned.
e second level of the matrix is related to the infra-
structure of the health care establishment that will pro-
vide the family physical and emotional memories of the
baby. Some of the infrastructure items consist of the
family’s individual accommodation, resources to col-
lect memories, a refrigerator to preserve the corpse and
a local to keep the memory boxes. e aforementioned
items are fundamental and most Brazilian maternity
wards need to restructure according to the following: (1)
individual accommodation is one of the issues Brazil-
ian grieving parents mention the most. It protects them
from curiosity; it prevents them from having to share the
grieving moment with other families who are celebrat-
ing the arrival of a healthy baby next to them; it also gives
them privacy to meet their child moments before sending
them to funeral rituals. Even with logistics challenges in
Brazilian childbirth facilities, some privacy must be con-
sidered and offered; (2) resources to collect mementos
inside the maternity ward, such as a camera to take pic-
tures of the baby and the family or material to register the
handprints and footprints, and a lock of the babys hair,
when available. A box to keep the items is important for
the process of creating memories and should be offered
to the family before hospital discharge; (3) refrigerator to
preserve the corpse is one of the least useful items, but it
might be essential at some point.
In childbirth facilities where complex cases are assisted,
many women need sedation or are unconscious for a
period of time (days or even weeks). When the woman is
awake, after being unconscious during birth and the first
hours or days after childbirth, the impact of the news may
be devastating, especially when the baby has already been
buried or cremated. In such situations, having the chance
to keep the baby so the mother can recover from seda-
tion/unconsciousness may have a positive outcome for
her mental health; (4) having a place to keep the memory
boxes that were not taken by the family after hospital dis-
charge, is also important. Chances are these families will
return the following weeks or months to take the boxes
with them once decision may change over time.
Health care attributes are on the third level of the
matrix. ey highlight the essential aspects of the care
given to parents: privacy (previously mentioned); indi-
vidual care, that adapts assistance to a family’s physical,
social and emotional needs. ese adjustments are based
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 6 of 17
Salgadoetal. Reprod Health (2021) 18:5
on beforehand locally developed alignments of care. is
is a delicate matter and health care professionals have
to observe ethical and non-judgmental values when it
comes to the family’s decisions, beliefs and feelings. It is
also challenging since the professionals themselves are
personally and individually affected. ey have their own
mechanisms to deal with grief and that has to be consid-
ered, as discussed in the previous level of the matrix. Our
suggestion to solve this problem is teamwork. erefore,
professionals are supported by the health care establish-
ment and the structured protocols and may follow the
pre-established recommendations. Informed and con-
scious decisions, evidence-based care, pre-established
institutional protocols and uniform technical behavior
are part of this approach to produce safe assistance and
continuous care.
e praxis is described on the fourth level. It highlights
the need to decide the birth as the first move. is con-
sists of an issue regarding vaginal birth versus cesarean
section, since the Brazilian scenario has worrying num-
bers of C-sections. In some cases, when the woman’s life
is at stake, cesarean sections are actually needed. How-
ever, in most stillbirth cases, vaginal births are the safest
choice.
e mode of birth is a mother’s decision. Nevertheless,
health care professionals should explain the risks and
benefits of each option. Women should have the chance
to experience labor and vaginal birth. is may help them
start grieving, since time, hormonal and physical ques-
tions may be addressed. Moreover, when the woman opts
for a vaginal birth, she will actively participate in the bio-
logical parturition process and she will be able to see and
hold the baby, as well as have a farewell moment, since
childbirth. Additionally, she will probably have a better
physical condition to participate on rituals (funeral, bur-
ial ceremonies or cremation) and to get pregnant again
sooner, if she wishes. Lastly, C-sections increase risks in
future pregnancies and childbirth when compared with
vaginal birth. us, all of the staff’s efforts should involve
providing the best health care, avoiding physical and psy-
chological risks for the mother. As a result, vaginal birth
tends to be a better option whenever possible, but some-
times, especially when there is a psychological trauma, a
C-section should be considered. In any case, if a C-sec-
tion is performed, holding the baby is recommended and
should be encouraged. In all cases, the staff will organize
the baby’s memory box and help with the decision-mak-
ing process regarding the baby’s corpse. It is also advis-
able, whenever possible, to have written plans for labor
and postpartum and for all decisions related to the baby.
In Brazil, post-mortem examinations are hard to be
run. Yet, whenever possible, they should be suggested
by health care providers. Finding the cause of death may
help the family mourn, even though clearly stating diag-
nosis is infrequent. Funerals, burial ceremonies or crema-
tions should be postponed so necroscopic examinations
may be run. Notably, even when the death occurs before
fetal viability (20weeks and/or 500g), the family may opt
for funerals, according to Brazilian law and the Federal
Council of Medicine technical reports [33]; it is essential
that the family have all the information they asked for
(e.g., procedures, clinical questions), which will support
their decision-making.
e intermediate elements of the matrix transcend
the objective aspects described here. ey include creat-
ing positive memories that are associated with the baby
and its death, which is challenging and complex. For this,
we recommend personalizing the approach and respect-
ing the woman’s decisions, aiming to lessen anxiety and
uncertainties. An institutional protocol that is uniform
and well-structured is essential. An open dialogue among
all the people involved in the care and emotional support
given by the professionals are fundamental points.
e end of the matrix regards the primary objective of
this proposal: to offer care that facilitates healthy perina-
tal bereavement. is may be achieved when all the meas-
ures mentioned above are transversally contemplated.
Rationale fordeveloping supporting guidelines
forstillbirth andperinatal death inBrazil
So far, there are no supportive guidelines for stillbirth or
neonatal death in Brazil. Health care services and health
care professionals deal with each situation according to
their own belief. Sometimes the professional offers care
based on what suits him/her, since dealing with bereave-
ment patients promotes stress and anguish. Additionally,
there is no institutional support available to help hospital
staff care for grieving patients. Health care assistance fre-
quently ends fast and close contact is avoided, once deal-
ing with grieving families is often challenging. erefore,
outlining supportive guidelines is urgent. Health care
establishments will be able to create local protocols to
care for families who are going to experience the death
of a baby. Likewise, these protocols will lessen health care
professionals’ stress.
Supporting guidelines are supposed to be used as a ref-
erence to those who want to adapt and implement them
in different health care contexts and scenarios and use
them locally. ese tools may promote the structure of
the care given to families who are experiencing perinatal
loss. Notwithstanding, the focus is not only the pregnant
or puerperal women’s well-being, but also the health care
professional’s welfare.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 7 of 17
Salgadoetal. Reprod Health (2021) 18:5
Objectives
e primary objective of e Perinatal Bereavement Pro-
ject is to assess the effects of international bereavement
guidelines adapted to the Brazilian context in the mental
health and grief experience of mothers who have under-
gone a perinatal loss. e secondary objective is to verify
the prevalence of postpartum depression, anxiety, stress
and grief adaptation symptoms, as well as assess the care
received in two different moments: before and after the
health care professionals are trained and maternity wards
are prepared.
Methods
Study design
is is a quasi-experimental study that uses qualitative
and quantitative methods. It also uses a before-and-after
analytical approach.
Setting
Data collection procedures
Study phases: Preparation: is is the phase where the
meetings with the maternity ward staff will take place
and the Reference Professionals for each maternity will
be assigned. Reference Professionals will be responsible
for keeping in touch with the researchers who will answer
any questions about the project; for organizing training/
courses; informing the list of stillbirth and neonatal death
cases; etc. ey are also going to recommend a Bereave-
ment Professional for the maternity ward. e Bereave-
ment Professional is responsible for bereavement issues
regarding the families and the staff. e same person
may be both the Reference Professional and the Bereave-
ment Professional. Reference Professionals may be any
professional who works at the maternity ward, and has
significant experience with the maternity ward routine
and procedures, and with the staff. ere could be two,
both responsible for managing, professional training and
guiding. ey will be in contact with the family when the
allocated professional is absent or ask for guidance. ey
should be a physician, a nurse or a midwife.
e Bereavement Professional should have experience
and skills to offer emotional and technical support to
the staff. ey may be available to support the families
as well. Accordingly, the maternity ward managers may
decide if one or two Bereavement Professionals will suf-
fice. Ideally, a psychologist should be the Bereavement
Professional, but professionals with further skills may
assume the position. e Bereavement Professional will
be trained in theoretical and practical contents to offer
assistance as required.
e time has come to promote awareness for manag-
ers, Bereavement and Reference Professionals regarding
perinatal mourning processes. It is also time to elaborate
what in Brazil is called Standardized Operational Proce-
dure (SOP) (in Portuguese, “Procedimento Operacional
Padrão”—POP), and professional qualification.
Pre‑intervention
is phase will consist of two actions: (a) meetings with
the focus group and (b) interviews with the women.
a) e pre-intervention focus group
During the pre-intervention focus group, an
informed consent form will be signed, and partici-
pants will answer sociodemographic and work expe-
rience questionnaires. e meeting will last no longer
than 1h30min.
b) e pre-intervention interview with women
e pre-intervention interview with the women will be
carried out by one of the researchers, based on the still-
birth and neonatal death list provided by the Reference
Professional from the maternities ward. ey will get in
touch to schedule an in-person interview in a place to be
defined. Information to verify inclusion and exclusion
criteria will be covered. After inclusion criteria are met,
the women will receive information concerning the study
and will be invited to participate. If they accept, the in-
person interview will be scheduled. During this meeting,
the informed consent form will be signed. Afterwards,
mental health scales will be applied. A qualitative inter-
view will cover socioeconomic, demographic and behav-
ioral data regarding the loss the woman went through.
Intervention
e intervention will be based on two publications: the
Brazilian book “Como lidar—luto perinatal: acolhimento
em situações de perda gestacional e neonatal” [17], based
on the Canadian “Guidelines for health care professionals
experiencing a perinatal loss” [15] and the manual pro-
vided by SANDS (Stillbirth & Neonatal Death Charity)
“Pregnancy loss and the death of a baby: Guidelines for
professionals” [14]. Both offer a framework to coordinate
important actions to assist families as shown in Fig.2.
Additional material will be published during the inves-
tigation and produced along the process. Based on the
British manual aforementioned, the initial content will
be broadened. is material will be available on www.
saude. fmrp. usp. br/ lutop erina tal. All documents staff
should use during hospitalization (Perinatal loss and
Memory creation files) will also be available on the same
site. e perinatal loss file will hold relevant information
about women’s health and the guideline step-by-step. It
will help professionals share information. e memory
creating file will provide guidance about the steps taken
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 8 of 17
Salgadoetal. Reprod Health (2021) 18:5
regarding the baby memory box. A summary of the main
actions regarding the supportive guidelines is available
on Table1.
Regarding the model Training of Trainers, an expert
teaches a professional who works in a health care estab-
lishment. e one who receives the instructions will
teach the others. erefore, after the implementation of
the Project, the qualified professional will continue pro-
viding refreshment courses to those who need it. For
this specific project, the expert will be the researcher.
Another professional will participate in the qualification
process and will be in charge of the regional staff after the
expert finalizes the project.
e training method consists of the following events:
Perinatal Bereavement Event—training: An in-person
event that will be organized with the Regional Health
Department XIII. Although it will be focused on spe-
cific professionals, managers and Reference Profes-
sionals, it will be open to all local professionals. Esti-
mated duration: 3h.
Reference Professional Meeting: is in-person event
aims to prepare and help the Reference Professionals
get ready to start the project and write the Standard
Operational Procedure (SOP). ey will also plan the
qualification of the professionals in their health care
establishments. Participants: professionals indicated
by maternity ward managers (physicians, nurses and
psychologists). Estimated duration: 3h.
Bereavement Professional Meeting: An in-person
event aiming to offer the Bereavement Profession-
als theoretical content about bereavement, the fam-
ily’s and professional’s points of view, so they may
carry out their functions. Participants: professionals
indicated by maternity ward managers (physicians,
Fig. 2 A proposal for supportive guidelines regarding stillbirth and neonatal death
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 9 of 17
Salgadoetal. Reprod Health (2021) 18:5
Table 1 Summary of the main actions on supportive guidelines for families experiencing stillbirth and neonatal death
Summary of supportive guidelines regarding perinatal bereavement
How to prepare the family to see the baby: Clean the baby (do not bathe him/her);
Dress the baby with diapers, socks, hat, clothes, blanket etc.;
Follow the same maternity ward protocol to bring alive babies to see their mothers;
Call the baby by his/her name;
Follow them up but keep some distance. Never let them unassisted
What should be provided for the memory box: Hair lock;
Handprint and footprint;
Placenta stamp (optional);
Baby’s pictures;
Baby’s first clothes;
Baby’s bracelet/identification tag;
Cards and letters written by the staff;
Leaflets about the bereavement process and bereavement support groups
Which written guidance should be provided: All information about funeral services and local civil registry office;
Information about how to deal with breast milk production;
Suppressing lactation
Breast milk donation
Post-discharge care;
Medical appointments and additional exams for further investigation (if necessary);
Bereavement support group;
Psychological services
What to do to provide continuous care: Discuss family planning;
Schedule regular appointments to assess mental and physical health, and discuss new findings
about what happened to the baby (when applicable);
In the case of a new gestation, follow health care guidelines for pregnant women who had previ-
ously experienced the loss of a baby;
Arrange to assist woman during the new puerperium
Guidelines for assisting pregnant women who had
previously experienced the loss of a baby: Remember: this is no longer an ordinary pregnancy, and may be considered a risk pregnancy
from the mental health point of view;
The previous loss may impact the following bereaved mother’s gestation, from antenatal care
through puerperium and breastfeeding;
Fear and complaints are expected responses and must be acknowledged;
Some parents may prefer to be cared for in a different hospital or by different staff members,
which should not be a problem;
Mental health screening should be available for both parents;
Specialized mental health support or psychological appointments should be encouraged at any
time during pregnancy and postpartum;
Consider avoiding standard antenatal classes, prioritizing individual preparation sessions for labor,
birth and caring for a newborn baby;
A special sticker can be used on both notice board and at room’s door wherein a bereaved
mother is in labor, so that the staff is aware of her condition;
Encourage the writing of a birth plan, so that parents’ preferences can be easily shared with all
staff during labor, birth and postpartum
Consider scheduling extra and longer antenatal appointments. Extra screening options should be
considered whenever necessary or demanded;
Set aside a weekly day or time at your institution for pregnant women who had previous
perinatal losses to seek assistance if they have questions about their baby’s well-being or their
pregnancies´ normality;
A C-section without clinical recommendation may be considered, when fear from natural birth
could not be dealt with after several psychological and communication interventions, as long
as the women acknowledge associated risks
What to do when there is:
Stillbirth
Neonatal death or imminent neonatal death
Severe malformation (incompatible with life or high
death probability)
1. Assure the mother/family privacy;
2. Deliver bad news properly;
3. Give the family all requested and necessary information;
4. Encourage the preparation of a Care Plan for the women and the baby. This Care Plan includes
a birth plan, whenever possible, and a palliative care for the baby, whenever necessary;
5. Choose and prepare a private room, to avoid contact with other mothers and their babies;
6. Apply special stickers on both notice board and at the bereaved mothers’ room door, so that
the staff is aware of her condition;
7. Avoid sedation;
8. Respect initial plans – whenever possible;
9. Encourage the mother/family to see the baby;
10. Encourage the mother/family to touch the baby, and to spend time with her/him;
11. Provide the memory box
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 10 of 17
Salgadoetal. Reprod Health (2021) 18:5
nurses, psychologists and social work professionals).
Estimated duration: 4h.
Coordination meeting: An in-person meeting will be
held in each maternity before the staffs are formed. It
aims to raise professionals’ and team work awareness
on the subject. A video will be produced and will be
available to the professionals who could not be pre-
sent.
Support network to answer any questions and guide
professionals involved: During the whole time the
project is being carried out, the researchers and the
health regional representative can be reached by
phone, WhatsApp (general group chat, maternity
ward group chats and private messages);
In-person and virtual follow-up will be provided
until the end of the project.
Among the actions in accordance with the training
methodology, some items will be given to the families.
Additionally, the following are to be given to the staff: A
box to keep the memories, a polaroid camera and polar-
oid paper, card for handprints and footprints, a small
plastic bag to keep the hair lock, a big plastic bag to keep
baby’s clothing items, a blanket that is used when the
baby is too small for conventional clothes.
Post‑intervention
is phase consists of two actions: interviews with each
woman in the post-intervention group and meetings with
the post-intervention focus groups.
One focus group consists of the nurses in each mater-
nity ward and the other is formed by the managers. e
interviews and the meeting will mirror the steps taken in
the pre-intervention phase.
Study participants
Participants
Women who experienced stillbirth and neonatal death
in one of the four public maternity wards in Ribeirão
Preto City, in São Paulo State, southeast region of Brazil.
Health care professionals, employees and managers of
the respective maternity wards will also participate.
a) Participants andeligibility criteria
All four public maternity wards in Ribeirão Preto were
invited to participate in this project and all of them
accepted.
No exclusion criteria were outlined for health care pro-
fessionals, employees and managers.
e inclusion criteria for women are:
a) To live in one of the municipalities of the Ribeirão
Preto region (XIII Regional Health Department, São
Paulo State)
b) Have experienced a stillbirth or a perinatal death
during the estimated period1;
c) Have faced the death of her baby in the following cir-
cumstances:
d) Pregnancy that lasted more than 20 complete weeks;
e) Had a baby weighing at least 500g;
f) Had a baby that died no later than twenty-eight days
after the birth (neonatal death).
Women exclusion criteria are to not understand Portu-
guese and have severe mental health impairment.
e main difference between the pre- and post-inter-
vention groups is the training process health care profes-
sionals will receive, together with preparing the maternity
ward to implement local protocol. It is estimated that
women who had a baby born in the pre-intervention
group did not receive a care based on the supportive
guidelines regarding perinatal bereavement.
e first 20 women from each group who accept to take
part in this study will be interviewed.
B) Research instruments anddata sources
Data will be collected from women interviewed and from
the focus group offered to professionals. We will use a
questionnaire specially designed for this project, as well
as validated tools used in previous mental health and
bereavement studies. Pilot interviews were performed
as a way to validate the questionnaire and organize the
interview process.
ree scales, that were adapted and validated to Brazil-
ian Portuguese, will be applied:
Perinatal Grief Scale (PGS)
e PGS presents 33 self-applicable psychomet-
ric assertions, divided into three subscales, related to
perinatal grief adaptation symptomatology. Involves
a five-point Likert Scale ranging from “strongly dis-
agree” to “strongly agree”. e cut-off score that we
will use is 90, as validated by Paris etal. [34,35] for
the Brazilian population.
Edinburgh Postpartum Depression Scale (EPDS)
e EPDS is a set of 10 self-applicable screening
questions, each of them with four multiple choice
responses, which indicates the intensity of depres-
sive signs and symptoms that are present during the
1 Due to the Covid-19 pandemic, the period for recruiting women will
change.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 11 of 17
Salgadoetal. Reprod Health (2021) 18:5
last seven days before the application. e cut-off
score that suggests the woman is probably depressed
(or with depression symptoms) is 11, as validated
by Santos for the Brazilian population [35].
Depression Anxiety Stress Scale-21 (DASS-21)
DASS-21 is a self-applicable scale with seven items
each. It assesses depression, stress and anxiety, con-
sidering the previous week. e answers are given
in a four-point Likert Scale that vary from 0 (totally
disagree) to 3 (totally agree). Score variations cor-
respond to symptom levels such as “normal” and
“severe”. e global scores for the three constructs
(depression, stress and anxiety) will be calculated as
validated by Vignola etal. for the Brazilian popula-
tion [36].
A sociodemographic questionnaire designed to collect
personal data, behavioral information, medical history
and information about care received will also be applied.
Each maternity ward will assign the Reference Profes-
sionals and the Bereavement Professionals among their
employees.
Data will be provided by each health care establish-
ment. ey will send a list containing the stillbirth and
neonatal death list, provided by the respective Reference
Professionals. e researcher will contact each candidate
to verify eligibility for this study, inviting them to partici-
pate and scheduling a meeting.
Focus groups will be conducted by the researchers, and
the health care professionals who will participate will be
contacted by the Reference Professional of each mater-
nity ward.
Primary andsecondary outcomes
Primary outcomes
A composite of a grief state (grief adaptation symptoms)
and rates of depression, stress and anxiety.
Secondary outcomes
Absence from work due to bereavement
Psychiatric treatment due to bereavement
Maternal admission to psychiatric health facilities
Suicide attempt
• Suicide
Variables
Variables ofinterest (Table 2)
Bias (Table 3)
Calculation ofsample size oravailable sample suciency
Considering the financial and human resources for the
project as well as the low prevalence of events of inter-
est, we chose to establish the sample size by convenience
(pragmatic sample size). In this context, time to select
women who will participate was the decisive factor for
sample size. Sample size in one study in the same field
was 44. Given the amount of available resources, we fixed
the post-intervention time in six months. us, given the
selection period of time, 40 women is the number esti-
mated (20 before intervention and 20 after intervention).
Ethical andequity aspects
is study is in accordance with the Helsinki Declara-
tion [37] and follows the guidelines and norms of the
National Health Council [38] order number 4666/12. e
data collected (interviews, scales that were translated to
Brazilian Portuguese, scales that were validated by Brazil-
ian investigations) will be exclusively used for academic
research. e identity and privacy of the participants will
be respected.
Each participant (women who lost their child, pro-
fessional and managers) will receive two copies of the
informed consent form. ey will provide information
about the study and the research staff’s phone number
and emails. is document will be read and signed in
case of agreement. e participant and the researcher
will keep one copy.
Women who present any risk to their mental health
will be forwarded to psychological/psychiatric assis-
tance according to their city of origin. In case they are
diagnosed by the health care establishment staff, the
respective protocols will be followed. Should diagnosis
be known during the second interview, the researcher
will send the participant’s personal information (name,
birthday, national health identification, mother’s name,
and hometown) to the XIII Regional Health Department,
under the care of the respective health care professional.
is professional will take the appropriate measures so
the case may be followed up accordingly.
Notably, this study will not offer participants any sig-
nificant risks. e results will be applied to benefit peri-
natal loss assistance all over the country. Additionally,
this investigation aims to promote equity, which might be
reached when local protocols are used. ey will take into
consideration the most important aspects of the support-
ive guidelines, as the assistance provided is personalized,
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 12 of 17
Salgadoetal. Reprod Health (2021) 18:5
respectful and dignifying. us, the patient’s physical and
emotional necessities are addressed.
Project management
e project management will be carried out by Uni-
versity of São Paulo researchers, as well as the Steer-
ing Committee and the Security and Data Monitoring
Committees. e Technical Advisory committee will be
held by a researcher from São Carlos Federal University
and a specialist of “4 Estações Psychology Institute”4 a
grief institute in the city of São Paulo. e data analysis
committee will be held by all researchers.
Table 2 Variables of interest
Variables of interest Data source Statistical methods
Sociodemographic
data: Age;
Marital Status;
Schooling;
Socioeconomic status;
Skin color;
Job;
Religion
Questionnaire Descriptive analysis
Frequency analysis
Characteristics/
Personal
and behavioral information
Recreational activities (sports and artistic activities);
Practices sports;
Uses drugs (alcohol, cigarettes and/or illegal drugs;
Is under medication and/or psychiatric treatment;
Participates in religious groups;
Undergoes psychotherapy;
Participates in bereavement support groups
Questionnaire Descriptive analysis
Frequency analysis
Health history Gestational age;
Miscarriage, abortion, stillbirth or neonatal previous deaths;
Illnesses before gestation;
Illnesses in the present gestation;
Fetal malformation;
Childbirth complications
Questionnaire Descriptive analysis
Frequency analysis
Intervention assessment data Satisfaction with the assistance given Questionnaire Descriptive analysis
Frequency analysis
Perception level regarding anxiety, stress, depression and port-partum
depression Edinburgh Postpar-
tum Depression
Scale
Depression Anxiety
Stress Scale-21
Descriptive analysis
Frequency analysis
Perception level regarding signals (symptoms and feelings) of bereave-
ment Perinatal Grief Scale Descriptive analysis
Frequency analysis
Difficulties with life routine resumption Perinatal Grief Scale Descriptive analysis
Frequency analysis
Table 3 Possible Issues and Solutions
Possible Biases Possible Solutions
1 Health care professionals may disregard important orientations or may
have difficulties in changing their routine in the beginning The Reference Professional will guide them from the beginning of the
project and so on
2 A mistake regarding gestational age or baby weight on the maternity
ward reports may include/exclude a woman from the sample The information regarding the baby (birth, death) will be checked with
the mother in the first contact
3 Mistakes made while filling out the documents created by this project The Reference Professional will help filling out the documents and will
follow up the case discussions
4 The mother/family does not authorize collection of some items listed
in the project (picture, for instance) The Reference Professional and the Bereavement Professional will
manage this situation and consider alternatives to solve this matter. If
necessary, researchers will assist them
5 During interview, a woman from the pre-intervention group reports
that she has received care based on the supportive guidelines
regarding perinatal bereavement
During the first contact, she will be asked for some information that may
help avoid this bias
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 13 of 17
Salgadoetal. Reprod Health (2021) 18:5
Data management andanalysis
Data analysis plan
e data will be analyzed by the project staff and, when-
ever necessary, by experts. e analysis plan as well as
a detailed plan for statistical analyses will be designed
before data collection starts. Qualitative thematic analy-
sis will be applied on the data from the questionnaire,
considering the pre-determined categories and new cat-
egories the analysis will provide. e data regarding the
focus groups will be treated likewise.
Descriptive analysis
Descriptive analysis will be based on the qualitative the-
matic analysis and harm frequency identified by e Peri-
natal Bereavement Safety ermometer developed for
this investigation (Fig.3).
e perinatal bereavement safety thermometer provides
a harm checking of 10 important aspects that impacts
the maternal mental health and the grieving process. It
is based on the British Safety ermometers tools devel-
oped by the National Health Service (NHS) created for
harm checking in five different areas [39].
According to the tool proposed for this study, low tem-
peratures of harm offer a better chance for a healthy peri-
natal bereavement, once it promotes better memories
for the mourning process and the bereavement experi-
ence. In the same way, we assumed that an ideal health
care assistance should avoid situations that may be inter-
preted as harm. All the ten items predicted on this tool
are considered central and take part on British [14] and/
or Canadian [15] guidelines.
Descriptive analysis will be performed to reveal harm
frequencies (Fig.3) caused by health care assistance that
did not observe the supporting guidelines for perinatal
loss. is analysis will also show the relation between
these harms and the findings provided by the three
tools used to verify women’s mental health and grieving
process.
ematic analysis will also be carried out by exploring
the findings related to the objectives of this investigation.
ey will be compared with each group and among the
groups. e analysis will consider cultural and gender
issues. It will also contemplate institutional specifici-
ties that will guide the implementation of the protocol in
each maternity ward involved in the project.
e qualitative thematic analysis was chosen due to the
fact that it is possible to map, analyze and identify pat-
tern (topics) in the data. It has the following steps: 1) data
organization; 2) pattern, topic and category mapping; 3)
emerging hypotheses testing and 4) alternative explana-
tions gathered from (pre-intervention, post-intervention
and focus) groups, as well as from comparative analysis
of the groups.
Quantitative analysis
A detailed plan for statistical analysis will be developed
by the researchers before data collection starts. A model-
ling plan will be developed and implemented by a team of
Fig. 3 Perinatal Bereavement Safety Thermometer: Harm Checking
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 14 of 17
Salgadoetal. Reprod Health (2021) 18:5
experts that includes biostatisticians, psychologists and
obstetricians.
Simple frequencies will be calculated, and a compari-
son method will be used (T Student or Chi Square tests).
Publishing thendings andresults dissemination plan
Our findings will be published in peer-reviewed scientific
journals (in English and Brazilian Portuguese). Moreover,
the results will be locally shared with those involved in
the design of the project, as a way to promote debates and
reflections on the present praxis. It will also help create
new measures for better outcomes in the future, which
will affect the families who will experience stillbirth and
neonatal death.
Discussion
Projection ofthemain ndings
e approach to women and families who lost their
babies during gestation, labor or post-partum period
must follow a specific supportive guideline, which has to
be locally adapted by Brazilian maternity wards. e way
this issue has been addressed by health care professionals
and the maternity wards may impact the process either
positively or negatively. When negative emotions pre-
vail, the technical approach might produce long-lasting,
adverse psychological effects that might remain for a long
time, sometimes even a lifetime.
e development of Brazilian supportive guidelines for
perinatal loss, based on international experiences, may
fill in an important gap regarding women’s health. It will
be contemplated from a perspective focused on women’s
sustainable development of wellbeing and empowerment.
Additionally, our guidelines cover professional qualifica-
tion. e staff that will be involved with this specific kind
of care will interact to elaborate situational and contextu-
alized scenarios to promote a better relationship between
health care professional and patient.
e qualification of the bereavement professional is
another relevant aspect of these guidelines. e Bereave-
ment Professional will not only help professionals deal
with specific and complex questions regarding grief, but
also assist grieving families. He/she will address the pri-
vate and individual matters of staff and professionals.
ese questions may be raised along with the assistance
given to the families during the bereavement process.
Among the Bereavement Professional’s tasks are the reor-
ganization of staff, psychological support and empathic
listening, whenever necessary.
The contribution ofthis study toassist stillbirth
andneonatal death
ese supportive guidelines aim to assist women and
families who are experiencing stillbirth and neonatal
death. is assistance is grounded on empathy and effi-
ciency during this challenging time. Moreover, it pro-
poses continuity of care, including comforting the
woman and her family, assisting the birth and designing
care procedures after hospital discharge. is might con-
tribute to the woman’s wellbeing and, consequently, her
quality of life, as well as her mental and physical health.
Likewise, the creation of standardized hospital proce-
dures may provide the professionals more satisfaction at
work, since occupational stress and communication anxi-
ety are reduced, and unwanted obstetric outcomes are
better managed. Notably, these guidelines will offer prac-
tical orientation towards technical routines related to the
death of a baby during gestation. It will include corpse
handling, memory box, among other routines.
Obstetric applicability
e applicability of these guidelines will result in a pilot
study. is way, the guidelines might be applied in simi-
lar scenarios. Moreover, based on our guidelines, other
maternity wards or organizations will be able to design
their own proposals for perinatal loss approach. ey
may use our findings to contemplate regional differences
regarding perinatal bereavement, such as the ones in
indigenous communities, quilombolas, favelas, and other
groups.
Anticipating main problems andproposing solutions
Dealing with death in childbirth facilities is a delicate sit-
uation. It might cause discomfort and privacy disruption
in patients and professionals. We will try to minimize
these problems and offer a clear outline of the objectives
of the present investigation. We will highlight the benefits
the project will bring to the family who is experiencing
this trauma, and to the ones who will be in this situation
in the future.
All participants will be granted the right to privacy
throughout the research project. ey may also stop par-
ticipating any time they want. Authors/researchers who
will deal directly with the participants are prepared to
listen to them empathically and professionally and avoid
any kind of embarrassment and discomfort this investi-
gation may cause.
Finally, any problem or challenge professionals might
have regarding bereavement will be addressed kindly,
inside the health care establishment and, whenever nec-
essary, will be handled by a qualified psychologist.
Some of the limitations and difficulties in this study can
be accessed on Table4.
Quality control
e researchers will follow up the implementation of
local protocols. is will be feasible during in-person
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 15 of 17
Salgadoetal. Reprod Health (2021) 18:5
meetings with the Reference Professionals and interac-
tions to promote on-the-spot problem solving. e quali-
fication of professionals and staff regarding the protocols
will be monitored by the researchers all the way through
the project.
Data privacy
Data confidentiality will be protected during the project
and afterwards, by the researchers and IT profession-
als involved in the research group. Access to the digital-
ized content is granted via encrypted password and data
safety systems. Printed material will be avoided and/or
destroyed after the project.
Research sustainability
Environmental impact estimates
e environmental impact of the present research will be
calculated by the tool available at https:// www. tjpr. jus.
br/ web/ gestao- ambie ntal/ calcu lador aco2. e Environ-
mental compensation plan will be designed with a local
institution based in Ribeirão Preto that donates seedlings
and resources to plant trees. In the future, based on the
carbon dioxide emission, the seedlings will be planted
according to the instructions given by the Ribeirão Preto
City Hall. e number of trees will compensate the CO2
emissions that happened during this investigation.
e tree planting will happen during an event similar to
ones that have already been held in other Brazilians cit-
ies—Araraquara (São Paulo State), Goiânia (Goiás State),
Recife (Pernambuco State)—where the parents who had
experienced stillbirth or neonatal deaths will plant a tree
to honor the child they lost. us, a park/garden/groove
of memories will be created. is event is intended to
take place annually, so more parents can join those who
have already planted their trees. It has a positive outcome
considering not only the bereavement perspective, but
also the environmental one.
Footnotes
1 SANDS (Stillbirth & Neonatal Death Charity):
https:// www. sands. org. uk/
2 Circulaire interministérielle DGCL/DACS/DHOS/
DGS/DGS/2009/182 du 19 juin 2009: https:// web.
archi ve. org/ web/ 20130 22618 5927/ https:// www.
sante. gouv. fr/ IMG/ pdf/ circu laire_ 182_ 190609. pdf
3 Women who lost babies in late pregnancy want to
donate breast milk: https:// www1. folha. uol. com. br/
cotid iano/ 2019/ 10/ mulhe res- que- perde ram- bebes-
em- fase- final- da- gesta cao- querem- opcao- de- doar-
leite- mater no. shtml
4 4 Estações Psychology Institute / Instituto 4 Estações:
https:// www. 4esta coes. com/
Table 4 Forecasting Difficulties: Mitigation Strategies
Diculties Strategies to mitigate them
1 Participants may display strong emotions, such as sorrow, despair,
anger, etc Interviewers will be prepared for these situations and will interrupt and
reschedule the interview if necessary
2 Participants may feel emotionally uncomfortable to share their experi-
ences and feelings regarding the loss of the baby, since they are
mourning
The questionnaire is very detailed and the fundamental information to
understand the assistance is based on yes/no questions
3 Health care professionals may be experiencing grief in their lives. Also,
bereavement situations may trigger previous feelings related to
losses that happened in their professional or private lives. This might
compromise or limit the assistance
The Bereavement Professional will pay close attention to this problem
and may support the professional and/or reorganize the staff and
substitute this member
4 The maternity ward might not have the resources to follow the new
guidelines for perinatal bereavement Limited resources are addressed by this project. It is possible to adjust
them accordingly
5 Professionals and employees may feel some discomfort or find the
guidelines morbid The Reference Professional will help the professionals and the staff
adjust to the new routine. More adapted professionals may join the
staff to help transition
6 Difficulties regarding continuous care after hospital discharge The professional from Regional Health Department XIII (Woman Health)
will follow up on the implementation of the project and will address
this problem
7 The maternity ward does not want to share data (women’s telephone
numbers, emails, etc.) The Project management staff understand that in the event the mater-
nity ward does not want to share data, it may be included in the staff
training, but not in data collection. Training and data collection are
not imbricated
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 16 of 17
Salgadoetal. Reprod Health (2021) 18:5
Abbreviations
DASS-21: Depression Anxiety Stress Scale-21; PGS: Perinatal Grief Scale de
Luto Perinatal; EPDS: Edinburgh Postpartum Depression Scale; SOP: Standard
Operational Procedure; WHO: World Health Organization.
Supplementary information
Supplementary information accompanies this paper at https:// doi. org/ 10.
1186/ s12978- 020- 01040-4.
Additional le1. Full Portuguese translation of The perinatal bereavement
project: development and evaluation of supportive guidelines for families
experiencing stillbirth and neonatal death in Southeast Brazil—a quasi-
experimental before-and-after study.
Acknowledgements
We would like to thank PhD Valéria Tinoco, from 4 Estações” Psychology
Institute, bereavement expert psychologist, for her reading and contribution
to the text and Beatriz de Oliveira, linguist and translator, for copyediting and
proofreading the manuscript.
Authors’ contributions
HOS and JPS designed the study and wrote the protocol. ACR and CBA dis-
cussed the manuscript and added their contributions to the text. All authors
read and approved the final manuscript.
Funding
The project execution will be funded by the annual research grant from the
foundation “Fundação de Apoio ao Ensino, Pesquisa e Assistência (FAEPA)” from
Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade
de São Paulo (HCFMRP-USP)”.
Availability of data and materials
The datasets used and/or analyzed during the current study are included in
this published article and supplementary information can be accessed upon
reasonable request. The full Portuguese translation of this article is available as
Additional file 1.
Ethics approval and consent to participate
This study is in accordance with the Helsinki Declaration of 1975 [37], revised
in 2008, and follows the guidelines and norms of the National Council of
Health, Resolution no 466/12 [38]. The study was approved by the institutional
review board of ‘”Hospital das Clínicas da Faculdade de Medicina de Ribeirão
Preto da USP—HCFMRP/USP”, Ribeirão Preto, Brazil, under the protocol
3.275.502 on April 22, 2019. This study will obtain consent from all participants.
Consent for publication
All consent from research participants will be stored and available upon
request.
Competing interests
All authors declare that they have no competing interests.
Author details
1 Department of Social Medicine, Ribeirão Preto Medical School, University
of São Paulo, Avenida dos Bandeirantes, 3900, Monte Alegre, Ribeirão Preto, SP
14049-900, Brazil. 2 Department of Medicine - Center for Biological and Health
Sciences, Federal University of São Carlos, Rod. Washington Luiz, s/n, São
Carlos 13565-905, Brazil.
Received: 29 September 2020 Accepted: 8 November 2020
References
1. Scott J. Stillbirths: breaking the silence of a hidden grief. Lancet.
2011;377:1386–8.
2. Homer CSE, Malata A, Ten Hoope-Bender P. Supporting women, families,
and care providers after stillbirths. Lancet. 2010;387:516–7.
3. Heazell AEP, Siassakos D, Blencowe H, Burden C, Bhutta ZA, et al.
Stillbirths: economic and psychosocial consequences. Lancet.
2016;387:604–16.
4. Lawn JE, Blencowe H, Pattinson R, Cousens S, Kumar R, et al. Still-
births: Where? When? Why? How to make the data count? Lancet.
2011;377:1448–63.
5. Farrales LL, Cacciatore J, Jonas-Simpson C, Dharamsi S, Ascher J, Klein
MC. What bereaved parents want health care providers to know when
their babies are stillborn: a community-based participatory study. BMC
Psychol. 2020;8:18.
6. Parkes CM. Love and loss: the roots of grief and its complications. London:
Routledge; 2013.
7. Doka K. Disenfranchised Grief: Recognizing Hidden Sorrow. New York:
Lexington Books; 1989. p. 04.
8. Casellato G. Luto não reconhecido: um conceito a ser explorado. In:
Casellato G, editor. Dor silenciosa ou dor silenciada? Perdas e lutos não
reconhecidos por enlutados e sociedade. Campinas: Livro Pleno; 2005.
p. 19–33.
9. Lawn JE, Blencowe H, Waiswa P, Amouzou A, Mathers C, et al.
Stillbirths: rates, risk factors, and acceleration towards 2030. Lancet.
2016;387:587–603.
10. Hutti MH. Social and professional support needs of families after peri-
natal loss. J Obstet Gynecol Neonatal Nurs. 2005;34:630–8.
11. Armstrong DS. Impact of prior perinatal loss on subsequent pregnan-
cies. J Obstet Gynecol Neonatal Nurs. 2004;33:765–73.
12. Murphy S. Reclaiming a moral identity: stillbirth, stigma and ‘moral
mothers.’ Midwifery. 2012;28:476–80.
13. Setubal MSV, Antonio MA, Amaral EM, Boulet J. Improving perinatology
residents’ skills in breaking bad news: a randomized intervention study.
Rev Bras Ginecol Obstet. 2018;40:137–46.
14. Schott J, Henley A, Kohner N. Pregnancy loss and the death of a baby:
guidelines for professionals. 4th ed. UK: Tantamount on behalf of
Sands, the stillbirth & neonatal death charity;2016.
15. Canadian Pedriatic Society Statement. Guidelines for health care pro-
fessionals supporting families experiencing a perinatal loss. Paediatrics
Child Health. 2001;6(7):469–77.
16. Perinatal Society of Australia and New Zealand Clinical Practice Guide-
line for Care Around Stillbirth and Neonatal Death, Third Edition, June
2018 https:// www. still birth cre. org. au/ assets/ Uploa ds/ Respe ctful- and-
Suppo rtive- Perin atal- Berea vement- Care. pdf . Accessed 02 Sept 2020.
17. Salgado HO, Polido CA. Como Lidar Luto Perinatal: Acolhimento
em situações de perda gestacional e neonatal.1ed. São Paulo: Ema
Livros;2018.
18. Paris GF, Montigny F, Pelloso SM. Fatores associados ao estado de luto
após óbito fetal: estudo comparativo entre brasileiras e canadenses.
Rev esc enferm. 2016;50:546–53.
19. Galvão GMM, Morsch DS, Tavares EC, Bouzada MCF, Byrd STE. An
Unrecognizable Pain: Neonatal Loss and The Needs of Fathers. Am Int J
Human Arts Soc Sci. 2020;2:3.
20. Galvão GMM, Tavares EC, Costa EA, Tavares GR, Bouzada MCF, Byrd SE.
A Mother’s Account About Lactation in the Context of Perinatal Death.
American International Journal of Humanities, Arts and Social Sciences.
2020;2(3).
21. WHO UNICEF. UNFPA. Managing complications in pregnancy and child-
birth: a guide for midwives and doctors. 2nd ed. Geneva: World Health
Organization; 2017.
22. WHO. Why we need to talk about losing a baby. Geneva: World Health
Organization; 2019.https:// www. who. int/ news- room/ spotl ight/ why-
we- need- to- talk- about- losing- a- baby . Accessed 02 Sept 2020.
23. Johnson OP, Langford RW. A randomized trial of a bereavement
intervention for pregnancy loss. J Obstet Gynecol Neonatal Nurs.
2015;44:492–9.
24. Rando TA. A perspective on loss, grief and mourning. In: Rando TA, editor.
Contact with the Baby. Illness, Crisis & Loss. 2012;20:295–298.
25. Limbo R. Caring for families experiencing stillbirth: a unified position
statement on treatment of complicated mourning. Champaign: Research
Press; 1993. p. 19–77.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 17 of 17
Salgadoetal. Reprod Health (2021) 18:5
fast, convenient online submission
thorough peer review by experienced researchers in your field
rapid publication on acceptance
support for research data, including large and complex data types
gold Open Access which fosters wider collaboration and increased citations
maximum visibility for your research: over 100M website views per year
At BMC, research is always in progress.
Learn more biomedcentral.com/submissions
Ready to submit your research
Ready to submit your research
? Choose BMC and benefit from:
? Choose BMC and benefit from:
26. Kingdon C, Givens JL, O’Donnell E, Turner M. Seeing and Holding Baby:
Systematic Review of Clinical Management and Parental Outcomes After
Stillbirth. Birth. 2015;42:206–18.
27. Silva JDD, Sales CA. Do imaginário ao real: a experiência de pais enluta-
dos. Rev Rene. 2012;13:1142–51.
28. Oishi KL. O jardim de Julia: a vivência de uma mãe durante o luto. Psic.:
Teor e Pesq. 2014;30:5–11.
29. Thomas J. The Child Bereavement Trust: caring for bereaved families. Br J
Midwifery. 1997;5:474–7.
30. Montero SMP, Sánchez JMR, Montoro CH, Crespo ML, Jaén AGV, Tirado
MBR. Experiences with perinatal loss from the health professionals’ per-
spective. Rev Lat Am Enfermagem. 2011;19:1405–12.
31. Flenady V, Boyle F, Koopmans L, Wilson T, Stones W, Cacciatore J. Meet-
ing the needs of parents after a stillbirth or neonatal death. BJOG.
2014;121:137–40.
32. Homer CSE, Malata A, Hoope-Bender PT. Supporting women, families,
and care providers after stillbirths. Lancet. 2016;387:516–7.
33. Ministério da Saúde. Agência Nacional de Vigilância Sanitária. Resolução
RDC Nº 306. 2004. https:// bvsms. saude. gov. br/ bvs/ saude legis/ anvisa/
2004/ res03 06_ 07_ 12_ 2004. html. Accessed 17 Aug 2020.
34. Paris GF, Montigny F, Pelloso SM. Cross-cultural adaptation and valida-
tion evidence of the perinatal grief scale. Texto contexto - enferm.
2017;26(1):e5430015.
35. Santos IS, Matijasevich A, Tavares BF, Barros AJD, Botelho IP, Lapolli C,
et al. Validation of the Edinburgh Postnatal Depression Scale (EPDS) in a
sample of mothers from the 2004 Pelotas Birth Cohort Study. Cad Saúde
Pública. 2007;23(11):2577–88.
36. Vignola RCB, Tucci AM. Adaptation and validation of the depression,
anxiety and stress scale (DASS) to Brazilian Portuguese. J Affect Disord.
2013;155:104–9.
37. World Medical Association. WMA Declaration of Helsinki - Ethical Princi-
ples for Medical Research Involving Human Subjects. https:// www. wma.
net/ polic ies- post/ wma- decla ration- of- helsi nki- ethic al- princ iples- for-
medic al- resea rch- invol ving- human- subje cts/. Accessed 02 Sept 2020.
38. Conselho Nacional de Saúde. Resolução nº 466, de 12 de dezembro
de 2012. https:// conse lho. saude. gov. br/ resol ucoes/ 2012/ Reso4 66. pdf.
Accessed 02 Sept 2020.
39. NHS. Safety Thermometer. https:// www. safet yther momet er. nhs. uk/.
Accessed 02 Sept 2020.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in pub-
lished maps and institutional affiliations.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
1.
2.
3.
4.
5.
6.
Terms and Conditions
Springer Nature journal content, brought to you courtesy of Springer Nature Customer Service Center GmbH (“Springer Nature”).
Springer Nature supports a reasonable amount of sharing of research papers by authors, subscribers and authorised users (“Users”), for small-
scale personal, non-commercial use provided that all copyright, trade and service marks and other proprietary notices are maintained. By
accessing, sharing, receiving or otherwise using the Springer Nature journal content you agree to these terms of use (“Terms”). For these
purposes, Springer Nature considers academic use (by researchers and students) to be non-commercial.
These Terms are supplementary and will apply in addition to any applicable website terms and conditions, a relevant site licence or a personal
subscription. These Terms will prevail over any conflict or ambiguity with regards to the relevant terms, a site licence or a personal subscription
(to the extent of the conflict or ambiguity only). For Creative Commons-licensed articles, the terms of the Creative Commons license used will
apply.
We collect and use personal data to provide access to the Springer Nature journal content. We may also use these personal data internally within
ResearchGate and Springer Nature and as agreed share it, in an anonymised way, for purposes of tracking, analysis and reporting. We will not
otherwise disclose your personal data outside the ResearchGate or the Springer Nature group of companies unless we have your permission as
detailed in the Privacy Policy.
While Users may use the Springer Nature journal content for small scale, personal non-commercial use, it is important to note that Users may
not:
use such content for the purpose of providing other users with access on a regular or large scale basis or as a means to circumvent access
control;
use such content where to do so would be considered a criminal or statutory offence in any jurisdiction, or gives rise to civil liability, or is
otherwise unlawful;
falsely or misleadingly imply or suggest endorsement, approval , sponsorship, or association unless explicitly agreed to by Springer Nature in
writing;
use bots or other automated methods to access the content or redirect messages
override any security feature or exclusionary protocol; or
share the content in order to create substitute for Springer Nature products or services or a systematic database of Springer Nature journal
content.
In line with the restriction against commercial use, Springer Nature does not permit the creation of a product or service that creates revenue,
royalties, rent or income from our content or its inclusion as part of a paid for service or for other commercial gain. Springer Nature journal
content cannot be used for inter-library loans and librarians may not upload Springer Nature journal content on a large scale into their, or any
other, institutional repository.
These terms of use are reviewed regularly and may be amended at any time. Springer Nature is not obligated to publish any information or
content on this website and may remove it or features or functionality at our sole discretion, at any time with or without notice. Springer Nature
may revoke this licence to you at any time and remove access to any copies of the Springer Nature journal content which have been saved.
To the fullest extent permitted by law, Springer Nature makes no warranties, representations or guarantees to Users, either express or implied
with respect to the Springer nature journal content and all parties disclaim and waive any implied warranties or warranties imposed by law,
including merchantability or fitness for any particular purpose.
Please note that these rights do not automatically extend to content, data or other material published by Springer Nature that may be licensed
from third parties.
If you would like to use or distribute our Springer Nature journal content to a wider audience or on a regular basis or in any other manner not
expressly permitted by these Terms, please contact Springer Nature at
onlineservice@springernature.com
... Unindo-se esses fatores, existe a negação social do reconhecimento dessa dor, uma das condições descritas por Freud em sua obra necessárias para a elaboração do luto. Kenneth Doka, referência para a temática, denomina esse processo como Disenfranchised Grief, traduzido para o português como Luto Não Reconhecido (ou Não Legitimado), pois, por mais que exista o processo de perda, e o sofrimento provindo deste, a perda não seria socialmente reconhecida, publicamente lamentada e nem apoiada socialmente, não havendo uma validação social (Kóvacs, 2020;Salgado, Andreucci, Gomes & Souza, 2021). Desta forma, essas mães e pais, além de sofrerem a perda de seus filhos, sentem também a perda ou a confirmação de não terem uma rede de apoio, o que só aumenta o sofrimento psíquico desses sujeitos. ...
... De acordo com essas recomendações, diretrizes e protocolos, foram desenvolvidos por países como Canadá, Reino Unido, Austrália, Nova Zelândia, entre outros, e buscam preparar os profissionais de Saúde para oferecer um cuidado mais adequado às famílias nessa situação. No Brasil, no entanto, não existem diretrizes ou protocolo nacional ou regional de como lidar com a situação de perda (Salgado et al, 2021). Em 2017, foi publicado o livro Como lidar: luto perinatal de Salgado e Polido (2017), com sugestões de diretrizes de acolhimento para profissionais da Saúde, baseado no protocolo Canadense. ...
... Em 2017, foi publicado o livro Como lidar: luto perinatal de Salgado e Polido (2017), com sugestões de diretrizes de acolhimento para profissionais da Saúde, baseado no protocolo Canadense. No momento, o mesmo grupo de pesquisadoras desenvolve e avalia diretrizes de acolhimento de mulheres em processo de luto perinatal e neonatal, baseada nas diretrizes canadenses e britânicas, em maternidades de uma cidade do interior do estado de São Paulo (Salgado et al, 2021). ...
Article
Full-text available
O luto perinatal, processo decorrente da perda gestacional ou neonatal, carrega especificidades pela falta de apoio social percebida pelas mães e pais, que consequentemente necessitam de apoio provindo de diferentes fontes, como ONGs e coletivos especializados no tema. Assim, este estudo busca compreender o trabalho destas organizações, buscando entender a importância no processo de elaboração do luto e de formação de rede de apoio, entrevistando 16 sujeitos, entre eles voluntários das organizações e maães e pais apoiados. Foram elaborados 12 códigos organizados em 5 categorias (perda, trabalhos dos institutos de apoio, rede de apoio, mudanças pela COVID e gênero). A partir dos relatos foi possível compreender a importância das instituições no apoio ao luto parental após a perda perinatal, com papel fundamental no entendimento e aceitação do ocorrido, assim como na elaboração do mesmo.
... Scientific evidence highlights the need for specific care in identifying complicated grief aimed at parents who have lost their children (7)(8) . A proven instrument in the investigation of complicated grief for parents who have had a miscarriage, fetal or neonatal loss is the Perinatal Grief Scale (PGS) (9) .Organized in English in 1989 and translated into Brazilian Portuguese in 2015 (10) , it is the most used scale to investigate perinatal grief in Brazil (11)(12)(13) and in several countries around the world (14)(15)(16) . ...
... The sum of the three subscales then ranges from 33 to 165 points. The cutoff point for identifying the state of complicated grief is set at a sum greater than 90 for parents with complicated grief, and a sum lower than or equal to 90 points for parents without grief, in accordance with the Perinatal GS (7)(8)11) . ...
Article
Full-text available
Introduction: The most common manifestation of complicated grief comes with the death of a child. In this context, there is an urgent need for using scales aimed at parents in order to identify parental grief. Objective: To establish an equivalence from the Perinatal Grief Scale to the Parental Grief Scale after the loss of a child. Method: This is a methodological study involving data collection and analysis by means of a linguistic, semantic, cultural, conceptual and colloquial equivalence from the perinatal grief scale (Perinatal GS) to the parental grief scale (Parental GS) in Brazilian Portuguese. Results: For the equivalence from the Perinatal GS to the Parental GS, one proposal, applied to Brazilian Portuguese, and bearing in mind that the latter is a language with gendered words, was to replace bebê (baby) with filho(a) (son/daughter), and both feminine and masculine words were used when referring to parents. The committee of expert judges participating in the cross-cultural adaptation and validation of the Perinatal GS agreed on 100% of the changes. Conclusion: The proposal of the Parental GS expands the investigation of complicated grief for parents who have lost their children in all age groups.
Article
Full-text available
Introducción: La muerte fetal o neonatal es un evento de origen multifactorial, el cual genera un panorama devastador para los padres (madre-padre) que lo experimentan, debido a sus múltiples impactos a nivel emocional, social y económico. Objetivo: analizar la evidencia científica disponible sobre las consecuencias en la salud mental de los padres ante un diagnóstico de muerte fetal y/o neonatal. Método: Revisión sistemática de la literatura según las directrices PRISMA, realizada en seis bases de datos: PUBMED, MEDLINE, SCOPUS, SCIENCE DIRECT, SPRINGER, TAYLOR & FRANCIS. Como criterios de inclusión, los estudios debían describir las consecuencias positivas y/o negativas en la salud mental de los padres como resultado del diagnóstico de muerte fetal y/o neonatal, publicados en los últimos diez años. El análisis de los hallazgos se llevó a cabo a través del análisis de contenido según Laurence Bardin. Resultados: 693 artículos fueron identificados en la búsqueda inicial para una muestra final de 14 estudios. Las investigaciones reportaron que la mujer es más vulnerable a presentar un impacto negativo, pues se reportan altos niveles de ansiedad, depresión y estrés; mientras que, en el padre, las consecuencias negativas comprenden sentimientos de culpa, aislamiento, ansiedad y resentimiento. Conclusiones: La muerte fetal y/o neonatal genera consecuencias negativas en la salud mental de los padres, como lo son la ansiedad y la depresión. También se identificaron consecuencias positivas como la aceptación comprensible y tranquila de la pérdida, respuestas humanas que pueden ser potencializadas desde los planes de cuidado de enfermería. Palabras Clave: salud mental, padres, muerte fetal, emociones. ABSTRACT Introduction: Fetal or neonatal death is an event of multifactorial origin, which generates a devastating panorama for the parents (mother-father) who experience it, due to its multiple impacts at emotional, social and economic levels. Objective: to analyze the available scientific evidence on the consequences of fetal and/or neonatal death on the mental health of parents. Method: systematic review of the literature according to PRISMA guidelines, carried out in six databases: PUBMED, MEDLINE, SCOPUS, SCIENCE DIRECT, SPRINGER, TAYLOR & FRANCIS. As inclusion criteria, the studies had to describe the positive and/or negative consequences on parental mental health as a result of fetal and/or neonatal death diagnosis, published in the last ten years. The analysis of the findings was carried out through content analysis according to Laurence Bardin. Results: 693 articles were identified in the initial search for a final sample of 14 studies. The research reported that women are more vulnerable to present a negative impact, since high levels of anxiety, depression and stress were reported; while, in the father, the negative consequences include feelings of guilt, isolation, anxiety and resentment. Conclusions: Fetal and/or neonatal death generates negative consequences in the mental health of the parents, such as anxiety and depression. Positive consequences were also identified such as understandable and calm acceptance of the loss, human responses that can be potentiated from nursing care plans. Keywords: mental health, parents, fetal death, emotions.
Article
Problem The experiences of women in low and middle-income countries following perinatal death remains difficult and challenging, thereby increasing their susceptibility to negative psychological impact particularly with insufficient bereavement care and support. Background Perinatal death invariably brings intense grief which significantly impacts women, and requires adequate bereavement care to limit negative outcomes in the short and long-term. Aim To develop deeper understanding of women’s experience of care and support following perinatal death in high burden settings. Methods Six electronic databases were searched with relevant terms established using the SPIDER tool, supplemented by hand search of reference lists. Studies were independently screened for inclusion by all authors. Meta-ethnography (Noblit and Hare,1988) was used to synthesise existing qualitative studies. Findings Eight studies conducted in Sub-Saharan African and South Asian countries namely South Africa, Uganda, Ghana, Kenya, India and Malawi were included, and three main themes were identified; mothers’ reaction to their baby’s death, care and support after perinatal death, and coping strategies in the absence of care and support. Perinatal death was not appropriately acknowledged therefore care and support was inadequate and, in some cases, non-existent. Consequently, mothers resorted to adopting coping strategies as they were unable to express their grief. Discussion There is insufficient care and support for women following perinatal death in high burden settings. Conclusions Further research is required into the care and support being given by healthcare professionals and families in high burden settings, thereby ultimately aiding the development of guidance on perinatal bereavement care.
Article
Purpose This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. Methods We performed a systematic and comprehensive search in five electronic databases (PubMed, The Cochrane Library, Web of Science, CNKI, Wan Fang Database), eight guideline databases, and six websites of professional organizations from March 2021 to June 2021. Four researchers used the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument to appraise the selected CPGs independently. The inter-rater reliability of AGREE II domains was calculated using the intraclass correlation coefficient with 95% CI. Results We included a total of 8 CPGs. The mean scores of six domains ranged from the lowest score of 46.61% (editorial independence) to the highest score of 87.85% (clarity of presentation). Subgroup analysis showed no statistical difference. Each domain achieved “good” and “very good” intraclass reliability. Two CPGs were deemed as grade A (strongly recommended), five were rated as grade B (recommended with modifications), and one was evaluated as grade C (not recommended). Conclusions Healthcare professionals in obstetrics and neonatology play an important role in helping bereaved parents and families to cope with perinatal loss. High-quality CPGs for perinatal bereavement care can serve as useful resources to improve the quality and outcomes of clinical practice. More efforts should be made to disseminate the best practices for perinatal bereavement care. When implementing GCPs in countries or regions with different backgrounds, professional translations, strict validations, and cultural adaptations should be taken into account.
Article
Full-text available
Background: Bereaved parents experience higher rates of depressive and post-traumatic stress symptoms after the stillbirth of a baby than after live-birth. Yet, these effects remain underreported in the literature and, consequently, insufficiently addressed in health provider education and practice. We conducted a participatory based study to explore the experiences of grieving parents during their interaction with health care providers during and after the stillbirth of a baby. Methods: This community-based participatory study utilized four focus groups comprised of twenty-seven bereaved parents (44% fathers). Bereaved parents conceptualized the study, participating at all stages of research, analyses, and drafting. Data were reduced into a main theme and subthemes, then broad-based member checked to ensure fidelity and nuances within themes. Results: The major theme that emerged centered on provider acknowledgement of the baby as an irreplaceable individual. Subthemes reflected 1) acknowledgement of parenthood and grief, 2) recognition of the traumatic nature of stillbirth, and 3) acknowledgement of enduring grief coupled with access to support. It was important that providers realized how grief was experienced within health care and social support systems, concretized by their desire for long-term, specialized support. Conclusions: Both mothers and fathers feel that acknowledgement of their baby as an individual, their parenthood, and their enduring traumatic grief by healthcare providers are key elements required in the process of initiating immediate and ongoing care after the stillbirth of a baby.
Article
Full-text available
Objective Breaking bad news (BBN) is particularly difficult in perinatology. Previous research has shown that BBN skills can be learned and improved when taught and practiced. This project evaluated whether a structured training session would enhance perinatology residents' skills in BBN. Methods This was a randomized controlled intervention study with year 1 to 4 Perinatology residents from a medical school in Brazil, during the 2014/15 school year. A total of 61 out of 100 (61%) eligible residents volunteered to a structured training program involving communicating a perinatal loss to a simulated patient (SP) portraying the mother followed by the SP's immediate feedback, both video recorded. Later, residents were randomly assigned to BBN training based on a setting, perception, invitation, knowledge, emotion and summary (SPIKES) strategy with video reviews (intervention) or no training (control group). All residents returned for a second simulation with the same SP blinded to the intervention and portraying a similar case. Residents' performances were then evaluated by the SP with a checklist. The statistical analysis included a repeated measures analysis of covariance (RM-ANCOVA). Complementarily, the residents provided their perceptions about the simulation with feedback activities. Results Fifty-eight residents completed the program. The simulations lasted on average 12 minutes, feedback 5 minutes and SPIKES training between 1h and 2h30m. There was no significant difference in the residents' performances according to the SPs' evaluations (p = 0.55). The participants rated the simulation with feedback exercises highly. These educational activities might have offset SPIKES training impact. Conclusion The SPIKES training did not significantly impact the residents' performance. The residents endorsed the simulation with feedback as a useful training modality. Further research is needed to determine which modality is more effective.
Article
Full-text available
Objective: to carry out cross-cultural adaptation and validation of evidence Perinatal Grief Scale into Portuguese of Brazil and French of Canada languages. Method: a methodological study involving application of Perinatal Grief Scale from the set of cross-cultural adaptation procedures. The population was all women that had stillbirth in the year 2013 residents in the municipal district of Maringa-Brazil and participants of the Centre d'Etudes et de Recherche en Intervention Familiale, University of Quebec, Outaouais, Canada. Results: the scale versions in Portuguese and French was reliable in the two populations. The Cronbach's alpha coefficient in the scale applied in Brazil was of 0.93 and applied in Canada was of 0.94. Only the Portuguese version, four items were not correlated with the total scale. Conclusion: the Perinatal Grief Scale can be used to identify the grief state in women that had stillbirth, in its version of each country.
Article
Full-text available
OBJECTIVE To verify the association between complicated grief and sociodemographic, reproductive, mental, marital satisfaction, and professional support characteristics in women after stillbirth. METHOD Cross-sectional study with 26 women who had stillbirth in 2013, living in the city of Maringá, Brazil, and eight women who attended the Centre d'Études et de Rechercheen Intervention Familiale at the University of Quebec en Outaouais, in Canada. The instrument was administered as an interview to a small number of mothers of infants up to three months (n=50), who did not participate in the validation study. RESULTS By applying the short version of the Perinatal Grief Scale, the prevalence of complicated grief in Brazilian women was found to be higher (35%) in relation to Canadian women (12%).Characteristics of the Brazilian women associated with the grief period included the presence of previous pregnancy with live birth, absence of previous perinatal loss, postpartum depression, and lack of marital satisfaction. For the Canadians it was observed that 80% of the women presenting no grief made use of the professional support group. In both populations the occurrence of complicated grief presented a higher prevalence in women with duration of pregnancy higher than 28 weeks. CONCLUSION The women that must be further investigated during the grief period are those living in Brazil, making no use of a professional support group, presenting little to no marital satisfaction, having no religion, and of a low educational level.
Article
Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional surveillance during subsequent pregnancies. Indirect and intangible costs of stillbirth are extensive and are usually met by families alone. This issue is particularly onerous for those with few resources. Negative effects, particularly on parental mental health, might be moderated by empathic attitudes of care providers and tailored interventions. The value of the baby, as well as the associated costs for parents, families, care providers, communities, and society, should be considered to prevent stillbirths and reduce associated morbidity.
Article
An estimated 2·6 million third trimester stillbirths occurred in 2015 (uncertainty range 2·4–3·0 million). The number of stillbirths has reduced more slowly than has maternal mortality or mortality in children younger than 5 years, which were explicitly targeted in the Millennium Development Goals. The Every Newborn Action Plan has the target of 12 or fewer stillbirths per 1000 births in every country by 2030. 94 mainly high-income countries and upper middle-income countries have already met this target, although with noticeable disparities. At least 56 countries, particularly in Africa and in areas affected by conflict, will have to more than double present progress to reach this target. Most (98%) stillbirths are in low-income and middle-income countries. Improved care at birth is essential to prevent 1·3 million (uncertainty range 1·2–1·6 million) intrapartum stillbirths, end preventable maternal and neonatal deaths, and improve child development. Estimates for stillbirth causation are impeded by various classification systems, but for 18 countries with reliable data, congenital abnormalities account for a median of only 7·4% of stillbirths. Many disorders associated with stillbirths are potentially modifiable and often coexist, such as maternal infections (population attributable fraction: malaria 8·0% and syphilis 7·7%), non-communicable diseases, nutrition and lifestyle factors (each about 10%), and maternal age older than 35 years (6·7%). Prolonged pregnancies contribute to 14·0% of stillbirths. Causal pathways for stillbirth frequently involve impaired placental function, either with fetal growth restriction or preterm labour, or both. Two-thirds of newborns have their births registered. However, less than 5% of neonatal deaths and even fewer stillbirths have death registration. Records and registrations of all births, stillbirths, neonatal, and maternal deaths in a health facility would substantially increase data availability. Improved data alone will not save lives but provide a way to target interventions to reach more than 7000 women every day worldwide who experience the reality of stillbirth.
Article
Loving and grieving are two sides of the same coin: we cannot have one without risking the other. Only by understanding the nature and pattern of loving can we begin to understand the problems of grieving. Conversely, the loss of a loved person can teach us much about the nature of love.
Article
In 2009 there were an estimated 2.6 million stillbirths worldwide. In the United States, a 2007 systematic review found little consensus about professional behaviors perceived by parents to be most helpful or most distressing. In the United Kingdom, a bereaved parents' organization has highlighted discordance between parental views and clinical guidelines that recommend clinicians do not encourage parents to see and hold their baby. The objective of this review was to identify and synthesize available research reporting parental outcomes relating to seeing and holding. We undertook a systematic review. We included studies of any design, reporting parental experiences and outcomes. Electronic searches (PubMed and PsychINFO) were conducted in January 2014. Three authors independently screened and assessed the quality of the studies before abstracting data and undertaking thematic analysis. We reviewed 741 records and included 23 studies (10 quantitative, 12 qualitative, and 1 mixed-method). Twenty-one studies suggested positive outcomes for parents who saw or held their baby. Increased psychological morbidity was associated with current pregnancy, choice not to see their baby, lack of time with their baby and/or insufficient mementos. Three themes were formulated "positive effects of contact within a traumatic life event," "importance of role of health professionals," and "impact on mothers and fathers: similarities and differences." Stillbirth is a risk factor for increased psychological morbidity. Parents seeing and holding their stillborn baby can be beneficial to their future well-being. Since 2007, there has been a proliferation of studies that challenge clinical guidelines recommending that clinicians do not encourage parental contact. © 2015 Wiley Periodicals, Inc.
Objective To examine the effects of a secondary bereavement intervention on grieving in women who experienced a miscarriage (pregnancy loss) at 12–20 weeks gestation.DesignExperimental, posttest only, control group design.SettingObstetric emergency center of a county hospital in a large city.ParticipantsForty women who experienced complete spontaneous miscarriages in the first or second trimester (8–20 weeks gestation).Methods Participants were randomly assigned to the grief intervention treatment group or usual standard care control group. The Medical Professional Guidelines for Health Care Professionals were used to construct the perinatal grief intervention. The Perinatal Grief Scale (PGS) was completed during a routine follow-up visit 2 weeks postloss.ResultsA one-way multiple ANOVA (MANOVA) was used to examine the difference in grieving between the control and experimental groups. Three dependent variables were used: despair, difficulty coping, and active grieving. Analysis revealed a significant difference on the combined dependent variables, F(3, 36) = 22.40, p < .000. When considering the three dependent variables separately, the treatment group displayed significantly lower levels of despair, F(1, 38) = 42.27, p < .001. Active grieving was high in both groups with the treatment group mean higher than the control group. Group means were similar for coping difficulty.ConclusionA bereavement intervention administered immediately after the miscarriage promotes women's ability to cope with early pregnancy loss.