International Journal of

Environmental Research
and Public Health

Article
Impact of Perinatal Death on the Social and Family
Context of the Parents

Dampak Kematian Perinatal terhadap Sosial dan Keluarga

Konteks Orang Tua

Cayetano Fernández-Sola 1,2, * , Marcos Camacho-Ávila 3,4 ,

José Manuel Hernández-Padilla 1,5, * , Isabel María Fernández-Medina 1 ,
Francisca Rosa Jiménez-López 1, Encarnación Hernández-Sánchez 4,6 ,
María Belén Conesa-Ferrer 7 and José Granero-Molina 1,2
1 Department of Nursing, Physiotherapy and Medicine, University of Almeria, 04120 La
Cañada de San Urbano, Spain; isabel_medina@ual.es (I.M.F.-M.); rjimenez@ual.es (F.R.J.-L.);
jgranero@ual.es (J.G.-M.)
2 Faculty of Health Sciences, Universidad Autónoma de Chile, Temuco 01090, Chile
3 Hospital La Inmaculada, 04600 Huércal-Overa, Spain; marcos_caav@hotmail.com
4 Hospital de Torrevieja, 03186 Torrevieja, Spain; ehsanchez@ucam.edu
5 School of Health and Education, Middlesex University, London NW4 4BH, UK
6 Faculty of Health Sciences, Universidad Católica de San Antonio de
Murcia, 30107 Guadalupe de Maciascoque, Spain
7 Faculty of Health Sciences, Universidad de Murcia, 30003 Murcia, Spain; mb.conesaferrer@um.es
* Correspondence: cfernan@ual.es or cayetano.fernandez@uautonoma.cl (C.F.-S.); j.hernandez-padilla@ual.es or
j.hernandez-padilla@mdx.ac.uk (J.M.H.-P.); Tel.: +34-950214570 (C.F.-S.); +34-950214588 (J.M.H.-P.)
CHECK EOJ

Received: 30 March 2020; Accepted: 12 May 2020; Published: 14 May 2020 update
Diterima: 30 Maret 2020; Diterima: 12 Mei 2020; Ditayangkan: 14 Mei 2020 s

Abstract: Background: Perinatal death (PD) is a painful experience, with physical,

psychological and social consequences in families. Each year, there are 2.7 million perinatal
deaths in the world and about 2000 in Spain. The aim of this study was to explore, describe
and understand the impact of perinatal death on parents’ social and family life. Methods: A
qualitative study based on Gadamer’s hermeneutic phenomenology was used. In-depth
interviews were conducted with 13 mothers and eight fathers who had suffered a perinatal
death. Inductive analysis was used to find themes based on the data. Results: Seven sub-
themes emerged, and they were grouped into two main themes:
1) perinatal death affects family dynamics, and 2) the social environment of the parents is
severely affected after perinatal death. Conclusions: PD impacts the family dynamics of the
parents and their family, social and work environments. Parents perceive that society
trivializes their loss and disallows or delegitimizes their grief. Implications: Social care, health
and education providers should pay attention to all family members who have suffered a PD.
The recognition of the loss within the social and family environment would help the families
to cope with their grief.

Abstrak:
Latar Belakang: Kematian perinatal (PD) adalah pengalaman yang menyakitkan, dengan
konsekuensi fisik, psikologis dan sosial dalam keluarga. Setiap tahun, ada 2,7 juta kematian
perinatal di dunia dan sekitar 2000 di Spanyol. Tujuan dari penelitian ini adalah untuk
mengeksplorasi, mendeskripsikan dan memahami dampak kematian perinatal terhadap
kehidupan sosial dan keluarga orang tua. Metode: Studi kualitatif berdasarkan fenomenologi
hermeneutik Gadamer digunakan. Wawancara mendalam dilakukan dengan 13 ibu dan
 delapan ayah yang menderita kematian perinatal. Analisis induktif digunakan untuk mencari
tema berdasarkan data. Hasil: Tujuh sub-tema muncul, dan mereka dikelompokkan menjadi
dua tema utama:
1) kematian perinatal mempengaruhi dinamika keluarga, dan 2) lingkungan sosial orang tua
sangat terpengaruh setelah kematian perinatal. Kesimpulan: PD berdampak pada dinamika
keluarga orang tua dan keluarga, lingkungan sosial dan kerja. Orang tua menganggap bahwa
masyarakat meremehkan kehilangan mereka dan tidak mengizinkan atau mendelegitimasi
kesedihan mereka. Implikasi: Pemberi pelayanan sosial, kesehatan dan pendidikan harus
memperhatikan semua anggota keluarga yang pernah menderita PD. Pengakuan atas
kehilangan dalam lingkungan sosial dan keluarga akan membantu keluarga untuk mengatasi
kesedihan mereka.

Keywords: perinatal death; perinatal grief; disenfranchised grief; qualitative research; parents
care
Kata kunci: kematian perinatal; kesedihan perinatal; kesedihan yang kehilangan haknya;
penelitian kualitatif; perawatan orang tua

1. Introduction
Perinatal death (PD) occurs between the 22nd full week of gestation (or when the baby
weighs 500 g) and 7 days after birth [1], and although it has decreased globally [2], about 2%
of pregnancies end in stillbirth [3]. The worldwide PD rate is estimated at around 2.7 million
deaths per year [4]. In Europe, the average PD rate is 5.5 deaths for every 1000 births [5] and
is lower in Spain with 4.43 deaths for every 1000 births, representing some 2000 affected
families each year [6].

1. Perkenalan
Kematian perinatal (PD) terjadi antara minggu ke-22 kehamilan penuh (atau ketika berat
bayi 500 g) dan 7 hari setelah lahir [1], dan meskipun telah menurun secara global [2], sekitar
2% kehamilan berakhir dengan lahir mati [ 3]. Tingkat PD di seluruh dunia diperkirakan
sekitar 2,7 juta kematian per tahun [4]. Di Eropa, angka rata-rata PD adalah 5,5 kematian
untuk setiap 1000 kelahiran [5] dan lebih rendah di Spanyol dengan 4,43 kematian untuk
setiap 1000 kelahiran, mewakili sekitar 2000 keluarga yang terkena dampak setiap tahun [6].

PD is one of the most painful experiences for parents [7,8], who have to undergo grieving
and coping processes that include biological, psychological, social and spiritual aspects [9,10].
Grief after a PD is a normal and individual process with multiple biopsychosocial
repercussions [11]. The physical
 Int. J. Environ. Res. Public Health 2020, 17, 3421 2 of 18

symptoms include decreased appetite, weight loss [12], insomnia [13], increased chronic
diseases, and decreased quality of life [14]. On a psychological level, parents who suffer a PD
have a greater predisposition to suffer anxiety, depression [15], post-traumatic stress
syndrome [16], and even an increased risk of suicide [17]. In the family environment, the
death of a baby modifies family relationships [18] and changes the behavior and type of care
for older children [19], varying from overprotection [20] to the distancing of other children
and neglect of parental obligations [21]. PD also affects older siblings who experience feelings
of guilt, fear, anxiety and misunderstanding [22]. The couple’s life is also affected as they may
become distant from each other, and there is an increase in the frequency of conflicts [23,24].

PD adalah salah satu pengalaman paling menyakitkan bagi orang tua [7,8], yang harus
menjalani proses berduka dan koping yang mencakup aspek biologis, psikologis, sosial dan
spiritual [9,10]. Kesedihan setelah PD adalah proses normal dan individual dengan berbagai
dampak biopsikososial [11]. Gejala fisik termasuk penurunan nafsu makan, penurunan berat
badan [12], insomnia [13], peningkatan penyakit kronis, dan penurunan kualitas hidup [14].
Pada tingkat psikologis, orang tua yang menderita PD memiliki kecenderungan lebih besar
untuk menderita kecemasan, depresi [15], sindrom stres pasca-trauma [16], dan bahkan
peningkatan risiko bunuh diri [17]. Dalam lingkungan keluarga, kematian bayi mengubah
hubungan keluarga [18] dan mengubah perilaku dan jenis pengasuhan untuk anak yang lebih
besar [19], bervariasi dari perlindungan berlebihan [20] hingga menjauhkan anak-anak lain
dan mengabaikan kewajiban orang tua [21 ]. PD juga mempengaruhi kakak yang mengalami
perasaan bersalah, takut, cemas dan kesalahpahaman [22]. Kehidupan pasangan juga
terpengaruh karena mereka mungkin menjadi jauh satu sama lain, dan ada peningkatan
frekuensi konflik [23,24].

In Western countries, PD grieving is not fully recognized or socially legitimated [25]; it is

not granted the importance it deserves, and its consequences are underestimated [26]. Parents
do not receive sufficient support on a psychological or spiritual level, and even if death occurs
before childbirth [25,27], its invisibility increases the negative repercussions [28]. Within this
social context, a father’s grief is even less recognized [29]. On the one hand, the father is
imbued with a social role of providing physical and emotional support for mothers, rendering
his feelings, experiences and needs invisible [30]; on the other hand, the attachment and bond
of a father is considered to be more rational and less passionate [31] since a mother creates her
bond with the fetus from the first weeks of pregnancy and this is reaffirmed with fetal
movements [32]. However, the risk of dysfunctional grief and the symptoms of psychological
trauma is common in both sexes [33,34], although less studied in fathers [29].

Di negara-negara Barat, kesedihan akibat PD tidak sepenuhnya diakui atau dilegitimasi secara
sosial [25]; itu tidak diberikan kepentingan yang layak, dan konsekuensinya diremehkan [26].
Orang tua tidak menerima dukungan yang cukup pada tingkat psikologis atau spiritual, dan
bahkan jika kematian terjadi sebelum melahirkan [25,27], ketidaktampakannya meningkatkan
dampak negatif [28]. Dalam konteks sosial ini, kesedihan seorang ayah bahkan kurang
dikenali [29]. Di satu sisi, ayah dijiwai dengan peran sosial menyediakan dukungan fisik dan
emosional bagi ibu, membuat perasaan, pengalaman, dan kebutuhannya tidak terlihat [30]; di
sisi lain, keterikatan dan ikatan seorang ayah dianggap lebih rasional dan kurang bergairah
[31] karena seorang ibu menciptakan ikatannya dengan janin sejak minggu-minggu pertama
kehamilan dan hal ini diperkuat dengan gerakan janin [32]. Namun, risiko kesedihan
disfungsional dan gejala trauma psikologis umum terjadi pada kedua jenis kelamin [33,34],
meskipun kurang dipelajari pada ayah [29].
 Int. J. Environ. Res. Public Health 2020, 17, 3421 3 of 18
The theoretical framework used in this research is based on the Worden theory of the
tasks of grieving [35]. Worden defines grieving as an adaptation process in which the
person suffering a loss must complete the following “tasks”: accept the reality of the loss,
work through the grieving for the loss, adapt to an environment in which the deceased baby is
not there and find a lasting connection with the deceased baby while continuing a new life.
Worden considers seven determining factors to understand the experience of people suffering
from a PD process. Among these factors, great importance is given to social issues and the
environment in which the adaptation takes place. Worden included such environmental factors
as “mediator 6: social variables” [36]. Although the individual implications of perinatal death
on the parents [11–18] and the social support available to survivors [37] have been extensively
investigated, there is a lack of research involving fathers [38,39]. Moreover, the impact of PD
on the social environment and the extended family has been poorly investigated [40]. The aim
of our study is thus to explore, describe and understand the impact of perinatal death on
parents’ social and family life.

Kerangka teori yang digunakan dalam penelitian ini didasarkan pada teori Worden tentang
tugas-tugas berduka [35]. Worden mendefinisikan berduka sebagai proses adaptasi di mana
orang yang menderita kehilangan harus menyelesaikan "tugas" berikut: menerima kenyataan
kehilangan, mengatasi kesedihan karena kehilangan, beradaptasi dengan lingkungan di mana
bayi yang meninggal tidak ada dan temukan hubungan yang langgeng dengan bayi yang
meninggal sambil melanjutkan hidup baru. Worden mempertimbangkan tujuh faktor penentu
untuk memahami pengalaman orang yang menderita proses PD. Di antara faktor-faktor ini, isu
sosial dan lingkungan tempat adaptasi berlangsung sangat penting. Worden memasukkan
faktor lingkungan seperti "mediator 6: variabel sosial" [36]. Meskipun implikasi individu dari
kematian perinatal pada orang tua [11-18] dan dukungan sosial yang tersedia untuk orang
yang selamat [37] telah diselidiki secara ekstensif, ada kekurangan penelitian yang melibatkan
ayah [38,39]. Selain itu, dampak PD terhadap lingkungan sosial dan keluarga besar telah
diselidiki dengan buruk [40]. Dengan demikian, tujuan penelitian kami adalah untuk
mengeksplorasi, mendeskripsikan, dan memahami dampak kematian perinatal pada kehidupan
sosial dan keluarga orang tua.

2. Methods

2.1 Study Design

A qualitative study was designed based on the hermeneutical phenomenology of
Gadamer, which highlights the dialogic nature of understanding. For Gadamer,
“understanding” is a process in which the researcher’s viewpoint (“horizon of pre-
understanding”) participates in a dialog with the participants’ horizon of pre-understanding
[41,42]. As a result, an understanding of the phenomenon arises, and this implies a “fusion of
horizons” [41] (p. 305).

2. Metode

2.1 Desain Studi

Studi kualitatif dirancang berdasarkan fenomenologi hermeneutis Gadamer, yang

menonjolkan sifat dialogis pemahaman. Bagi Gadamer, "pemahaman" adalah proses di mana
sudut pandang peneliti ("cakrawala pra-pemahaman") berpartisipasi dalam dialog dengan
cakrawala pra-pemahaman peserta [41,42]. Akibatnya, pemahaman tentang fenomena muncul,
dan ini menyiratkan "perpaduan cakrawala" [41] (hlm. 305).
 Int. J. Environ. Res. Public Health 2020, 17, 3421 4 of 18

The Gadamerian-based method developed by Valerie Fleming has been followed in this
study [43]. Firstly, researchers must ensure that the phenomenon they intend to study can be
experienced in the lifeworld. This is the case for perinatal death and its impact on parents’
social and family life. Secondly, the researchers must clarify their pre-understanding of the
phenomenon (“reflexivity”). For Gadamer, it is not possible to exclude the researcher’s
previous ideas (prejudice or pre-understanding) and all understanding emerges from the
researcher’s pre-understanding of a phenomenon. Thus, the researchers’ pre-understanding
of the phenomenon has to be clarified and they must explain how such pre-understanding was
used in the investigation [44]. Three of the
researchers were midwives (M.C.-A., E.H.-S., M.B.C.-F.) who helped us to recruit the sample
and carry out the interviews. Other researchers have experience in qualitative research (C.F.-
S., J.M.H.-P., J.G.-M., I.M.F.-M.) and have previously researched perinatal death and grief
(F.R.J-L., I.M.F.-M.). This helped them to conduct the study and analysis. One researcher is a
native Spaniard who is bilingual in English (J.M.H.-P.) and helped us in the process of the
translation and back-translation of the interviews to avoid losing their expressiveness.

Metode berbasis Gadamerian yang dikembangkan oleh Valerie Fleming telah diikuti dalam
penelitian ini [43]. Pertama, peneliti harus memastikan bahwa fenomena yang ingin dipelajari
dapat dialami di dunia kehidupan. Ini adalah kasus kematian perinatal dan dampaknya
terhadap kehidupan sosial dan keluarga orang tua. Kedua, para peneliti harus mengklarifikasi
pra-pemahaman mereka tentang fenomena tersebut ("refleksivitas"). Bagi Gadamer, tidak
mungkin mengecualikan gagasan peneliti sebelumnya (prasangka atau prasangka) dan semua
pemahaman muncul dari prapemahaman peneliti tentang suatu fenomena. Dengan demikian,
pemahaman awal peneliti tentang fenomena tersebut harus diklarifikasi dan mereka harus
menjelaskan bagaimana pemahaman awal tersebut digunakan dalam penyelidikan [44]. Tiga
orang peneliti adalah bidan (M.C.-A., E.H.-S., M.B.C.-F.) yang membantu kami untuk
merekrut sampel dan melakukan wawancara. Peneliti lain memiliki pengalaman dalam
penelitian kualitatif (C.F.-S., J.M.H.-P., J.G.-M., I.M.F.-M.) dan sebelumnya telah meneliti
kematian dan kesedihan perinatal (F.R.J-L., I.M.F.-M.). Ini membantu mereka melakukan
studi dan analisis. Seorang peneliti adalah orang Spanyol asli yang menguasai dua bahasa
dalam bahasa Inggris (J.M.H.-P.) dan membantu kami dalam proses penerjemahan dan
terjemahan balik dari wawancara untuk menghindari kehilangan ekspresi mereka.

The study was conducted in the hospitals of Torrevieja and Vinalopó, in Alicante,
Spain. Both belong to the Spanish National Health System (public hospitals) and have an
average of 1400 births per year each.

Penelitian dilakukan di rumah sakit Torrevieja dan Vinalopó, di Alicante, Spanyol. Keduanya
termasuk dalam Sistem Kesehatan Nasional Spanyol (rumah sakit umum) dan memiliki rata-
rata Masing-masing 1400 kelahiran per tahun.

2.2 Participants
In order to recruit participants, the data manager at both hospitals provided the
researchers with the contact information of all the parents who had suffered a perinatal death
in the last 5 years (n = 63). Once the researchers checked that the potential participants met the
inclusion criteria, one of the researchers (M.C.-A.) telephoned them to explain the study’s aim
and to invite them to participate. When the potential participants asked for some time to think
about the invitation, they were contacted again two days later. The interviewers made an
appointment with those who accepted participation. The inclusion criteria were as follows:
having suffered a perinatal loss between the 22nd week of gestation and the first week of life
of the baby; the death having occurred between three months and five years before the time of
the interview; and signing the informed consent form. The exclusion criteria were as follows:
not speaking Spanish or English (8 cases) and refusing to participate in the study (18 cases).
Nine people declined participation because they did not want to talk about the topic, and
another nine said they did not have time to participate. In the end, 21 participants were
interviewed (age range 26–43 years old, SD: 4.76 years). The researchers let the participants
decide where they wanted to be interviewed so that they felt most comfortable. All in-depth
interviews were conducted face-to-face with the participants, who did not have to go back to
the hospital where their babies’ death occurred. The participants did not receive any economic
compensation for their participation. All of the participants were part of either a nuclear
family (n = 19) or an extended nuclear family with grandparents (n = 2). The socio-
demographic data of all participants can be seen in Table 1.

2.2 Peserta

Untuk merekrut peserta, manajer data di kedua rumah sakit memberikan informasi kontak
semua orang tua yang menderita kematian perinatal dalam 5 tahun terakhir (n = 63) kepada
para peneliti. Setelah peneliti memeriksa bahwa calon peserta memenuhi kriteria inklusi, salah
satu peneliti (M.C.-A.) menelepon mereka untuk menjelaskan tujuan penelitian dan
mengundang mereka untuk berpartisipasi. Ketika calon peserta meminta waktu untuk
memikirkan undangan tersebut, mereka dihubungi lagi dua hari kemudian. Pewawancara
membuat janji dengan mereka yang menerima partisipasi. Kriteria inklusi adalah sebagai
berikut: mengalami kehilangan perinatal antara minggu ke-22 kehamilan dan minggu pertama
kehidupan bayi; kematian terjadi antara tiga bulan dan lima tahun sebelum waktu wawancara;
dan menandatangani formulir persetujuan. Kriteria eksklusi adalah sebagai berikut: tidak
berbicara bahasa Spanyol atau Inggris (8 kasus) dan menolak untuk berpartisipasi dalam
penelitian (18 kasus). Sembilan orang menolak partisipasi karena mereka tidak ingin
membicarakan topik tersebut, dan sembilan lainnya mengatakan mereka tidak punya waktu
untuk berpartisipasi. Pada akhirnya, 21 peserta diwawancarai (rentang usia 26-43 tahun, SD:
4,76 tahun). Para peneliti membiarkan peserta memutuskan di mana mereka ingin
diwawancarai sehingga mereka merasa paling nyaman. Semua wawancara mendalam
dilakukan secara tatap muka dengan peserta, yang tidak harus kembali ke rumah sakit tempat
kematian bayi mereka terjadi. Para peserta tidak menerima kompensasi ekonomi apapun atas
partisipasi mereka. Semua peserta adalah bagian dari keluarga inti (n = 19) atau keluarga inti
dengan kakek-nenek (n = 2). Data sosio-demografi seluruh partisipan dapat dilihat pada
Tabel1.

Table 1. Socio-demographic data of the participants (N = 21).

Elder Children Previous Moment of Age of

Participant Age Sex Nationality Employment (Age Range) Loss (n) Death Baby
P-1 26 Female Colombian Employed No No Intra-natal 1 40 weeks
Yes
P-2 43 Female Colombian Unemployed No Ante-natal 2 30 weeks
(8)
Yes
P-3 38 Female Spanish Employed Yes (2) Intra-natal 24 weeks
(8)
P-4 38 Male Spanish Employed No Yes (2) Intra-natal 24 weeks
Yes
P-5 37 Female Spanish Employed No Ante-natal 34 weeks
(5)
Yes
P-6 43 Female Spanish Employed No Post-natal 3 6 days
(6–12)
P-7 43 Male Spanish Employed No No Post-natal 6 days
P-8 33 Female Spanish Employed No No Post-natal 3 days
P-9 33 Male Spanish Employed No No Post-natal 3 days
Yes
P-10 31 Female Ecuadorian Unemployed (5) Yes (1) Ante-natal 28 weeks
 Table 1. Cont.

Elder Children Previous Moment of Age of

Participant Age Sex Nationality Employment
(Age Range) Loss (n) Death Baby
P-11 26 Male Spanish Employed No No Ante-natal 40 weeks
Yes
P-12 30 Female Spanish Unemployed No Ante-natal 40 weeks
(3)
P-13 36 Female Spanish Employed No No Intra-natal 24 weeks
P-14 33 Female Spanish Employed No No Ante-natal 36 weeks
P-15 37 Female Spanish Employed No Yes (1) Ante-natal 34 weeks
Yes
P-16 37 Female Spanish Unemployed No Ante-natal 38 weeks
(6–12)
Yes Yes (1) Ante-natal 38 weeks
P-17 38 Male Spanish Employed (6–12)

Yes Yes (1) Ante-natal 37 weeks

38 Male Spanish Employed
(7)
Yes No Ante-natal 37 weeks
35 Female Spanish Employed
(7)
35 Male Spanish Employed No No Ante-natal 38 weeks
P-21 37 Male Spanish Employed No No Ante-natal 25 weeks

1
Intranatal death: fetus death during birth. 2 Antenatal death: fetus death between 22 weeks of gestation and birth.
3
Postnatal death: baby’s death between birth and the first week of life.

1 Intranatal death: fetus death during birth. 2 Antenatal death: fetus death between 22 weeks
of gestation and birth.
3 Postnatal death: baby’s death between birth and the first week of life.

2.3 Data Collection

In-depth interviews were carried out by three researchers working as midwives (M.C.-
A., E.H.-S., M.B.C.-F.) in the hospitals in which the study was conducted. The researchers
received training on how to make the interviews resemble an in-depth conversation and on
how to handle painful situations. They had an interview protocol that contained the aims,
ethical issues, and a list of questions (Table 2). Before commencing with the interviews, the
researchers reminded the participants of the aim of the study and the voluntary nature of their
participation. All participants signed an informed consent. All interviews were recorded for
later transcription. The average duration of the interviews was 45 min. The researchers made
notes on nonverbal elements of the communication. When the researchers considered that
data saturation had been reached, the data collection was finalized. This decision was made
upon the following two criteria: 1) there were no new issues arising from the participants’
interviews, and 2) the remaining eligible participants did not have different
sociodemographic characteristics (for example, single parents). Those who did not
participate despite being eligible and giving consent to participate were sent an email to
thank them for their willingness and to let them know that it was not going to be necessary to
interview them.
2.3 Pengumpulan Data

Wawancara mendalam dilakukan oleh tiga peneliti yang bekerja sebagai bidan (M.C.-A.,
E.H.-S., M.B.C.-F.) di rumah sakit tempat penelitian dilakukan. Para peneliti mendapatkan
pelatihan tentang bagaimana membuat wawancara menyerupai percakapan mendalam dan
bagaimana menangani situasi yang menyakitkan. Mereka memiliki protokol wawancara yang
berisi tujuan, masalah etika, dan daftar pertanyaan (Tabel2). Sebelum memulai wawancara,
para peneliti mengingatkan peserta tentang tujuan studi dan sifat sukarela dari partisipasi
mereka. Semua peserta menandatangani persetujuan. Semua wawancara direkam untuk
transkripsi nanti. Rata-rata durasi wawancara adalah 45 menit. Peneliti membuat catatan
tentang elemen komunikasi nonverbal. Ketika peneliti menganggap bahwa kejenuhan data
telah tercapai, pengumpulan data diselesaikan. Keputusan ini dibuat berdasarkan dua kriteria
berikut: 1) tidak ada masalah baru yang muncul dari wawancara peserta, dan 2) peserta yang
memenuhi syarat yang tersisa tidak memiliki karakteristik sosiodemografi yang berbeda
(misalnya, orang tua tunggal). Mereka yang tidak berpartisipasi meskipun memenuhi syarat
dan memberikan persetujuan untuk berpartisipasi dikirimi email untuk berterima kasih atas
kesediaan mereka dan untuk memberi tahu mereka bahwa tidak perlu mewawancarai mereka.

Table 2. Interview protocol.

Stage Subject Content/Example Questions
Knowing their experiences to be able to help other
Motives, reasons
Introduction parents in their situation.
Inform about volunteering, recording, consent,
Ethical issues
possibility of dropping out.
Beginning Introductory question Tell me your experience. What happened to you?
How has your baby’s death affected your family?
Development Conversation guide How has it affected your circle of friends?
How has it affected your environment?
Closing Final question Is there anything else you’d like to tell me?
Thank them for taking part. Remind them of how
Appreciation their testimony will be used and tell them we are at
their disposition.

2.4 Data Analysis

The following steps described by Valerie Fleming [43] were followed in order to
understand the phenomena from the data. Firstly, the researchers (M.C.-A., E.H.-S.,
M.B.C.-F.) reached a spontaneous understanding through the dialog with the participants
(interviews). In order to do so, the researchers made notes that were useful in the
subsequent transcription and coding process. These notes also helped to modify some
questions or request more details which were not initially included in the interview
protocol. Secondly, the researchers gained an understanding of the studied phenomenon
through the
transcription analysis. All interviews were transcribed (M.C.-A., E.H.-S., M.B.C.-F.) and
incorporated into a Project in ATLAS.ti 8 Software for analysis (C.F.-S., J.M.H.-P., F.R.J.-L.,
M.B.C.-F.). The transcripts were read to get a general idea of what the participants said.
Then, the transcriptions were re-read line by line for detailed analysis. Significant fragments
were selected as citations. The citations were coded using the ATLAS.ti coding procedures
(open coding, coding from a code list, autocoding). The initial codes were grouped into units
of meaning, sub-themes and themes using ATLAS.ti functions such as grouping codes or
creating networks. An example of the coding work that led us from the data (quotation) to
the subject can be seen in Table 3. Thirdly, to increase the rigor of the study (credibility,
reliability), some participants checked the units of meaning, themes, and sub-themes.

2.4 Analisis Data

Langkah-langkah berikut yang dijelaskan oleh Valerie Fleming [43] diikuti untuk memahami
fenomena dari data. Pertama, peneliti (M.C.-A., E.H.-S., M.B.C.-F.) mencapai pemahaman
spontan melalui dialog dengan peserta (wawancara). Untuk melakukannya, para peneliti
membuat catatan yang berguna dalam proses transkripsi dan pengkodean selanjutnya. Catatan
ini juga membantu memodifikasi beberapa pertanyaan atau meminta lebih banyak rincian
yang pada awalnya tidak disertakan dalam protokol wawancara. Kedua, peneliti memperoleh
pemahaman tentang fenomena yang diteliti melalui analisis transkripsi. Semua wawancara
ditranskripsikan (MC-A., EH-S., MBC-F.) Dan dimasukkan ke dalam Proyek di ATLAS.ti 8
Software untuk analisis (CF-S., JMH-P., FRJ-L., MBC -F.). Transkrip dibacakan untuk
mendapatkan gambaran umum tentang apa yang dikatakan peserta. Kemudian, transkripsi
dibaca kembali baris demi baris untuk analisis rinci. Fragmen yang signifikan dipilih sebagai
kutipan. Kutipan diberi kode menggunakan prosedur pengkodean ATLAS.ti (pengkodean
terbuka, pengkodean dari daftar kode, pengkodean otomatis). Kode awal dikelompokkan
menjadi unit makna, sub tema dan tema menggunakan fungsi ATLAS.ti seperti kode
pengelompokan atau pembuatan jaringan. Contoh pekerjaan coding yang mengarahkan kita
dari data (kutipan) ke subjek dapat dilihat pada Tabel3. Ketiga, untuk meningkatkan ketelitian
studi (kredibilitas, reliabilitas), beberapa peserta memeriksa unit makna, tema, dan sub tema.
 Table 3. Example of the codification process.
Quote Initial Codes Unit of Meaning Subtheme Theme
At the beginning he said, ‘No mommy,
nothing’s going to happen, everything is The father: struggle between
going to work out well, we’re going to Father: encourage, Father: protect, Father: Role of conserving the stereotypical
get over it, but... there came a time when Father: fall apart protector protective role and succumbing
he fell apart (P-2) to the pain
I already know what it is to lose a child,
I have to take care of them more. My Perinatal death
Other children: take greater care shakes up the
daughter tells me: ‘Why do you take of them. Other children: fear of
care of me so much now?’ I tell her that Siblings: Elder siblings: between family dynamics
something happening to them.
I’m scared something will happen to her over-protection over-protection and abandonment
Other children: notice
or someone will do something to her. It over-protection
scares me a lot (P-10)

2.5 Ethical Considerations

The study was approved by the Joint Investigation Commission of the Hospitals of
Torrevieja and Vinalopó (CIVHTV-16-28-12). Participation was voluntary. Following the
interview protocol (see Table 2), information on ethical aspects (i.e., confidentiality, the
need to record interviews, the possibility of not responding or abandoning the interview,
anonymity) was provided at the beginning of the interview. The participants received
emotional support during and after the interviews.

2.5 Pertimbangan Etis

Studi ini disetujui oleh Joint Investigation Commission of the Hospitals of Torrevieja and
Vinalopó (CIVHTV-16-28-12). Partisipasi bersifat sukarela. Mengikuti protokol wawancara
(lihat Tabel 2), informasi tentang aspek etika (yaitu, kerahasiaan, kebutuhan untuk merekam
wawancara, kemungkinan untuk tidak menanggapi atau meninggalkan wawancara,
anonimitas) diberikan pada awal wawancara. Para peserta menerima dukungan emosional
selama dan setelah wawancara.

3. Results

The data analysis led to 36 units of meaning that were grouped into seven sub-
themes. These sub-themes were grouped into two main themes that helped us to understand
how parents who have suffered a PD perceive the impact it has on their social and family
environment (Table 4).

3. Hasil

Analisis data menghasilkan 36 unit makna yang dikelompokkan menjadi tujuh sub tema. Sub-
tema ini dikelompokkan menjadi dua tema utama yang membantu kami untuk memahami
bagaimana orang tua yang pernah menderita PD memandang dampaknya terhadap lingkungan
sosial dan keluarga mereka (Tabel 4).
Table 4. Themes, subthemes and units of meaning.
Main Theme
Perinatal death affects
family dynamics
The social environment of the
parents is severely affected
after
perinatal death
Subtheme
The father: struggle between conserving the
stereotypical protective role and
succumbing to pain.
Elder siblings: feeling over-protected
or abandoned
New pregnancies dominated by fear:
medicalization and avoidance
Between strengthening and weakening of the link
between the couple.
Impact of perinatal death on the extended family.
Work impact: lose a child, lose a job.
Social impact: between disallowing grief
and remembering pain.
Units of Meaning
Masculine figure. Feelings. Father: lack of
support. Father: traditional role. Father:
protective role. Support. Father: forgetting.
Siblings: overprotection. Abandonment of
children. Affecting siblings. Siblings:
concealment. Brothers: self-protection.
Siblings: memories. Siblings: making
a drawing.
Fear of new pregnancy. Avoiding new
pregnancy. Medicalization. New
pregnancy.
Fear. Panic. Repressing desires.
Marriage. Increase in quarrels. Alteration of
sexual relations. Strengthening of bond.
Affecting family. Grief of grandparents.
Weeping. Solidarity. Seeing their own
children suffering.
Loss of job. Reduction of remuneration.
Unrecognized grief. Inappropriate social
messages. Social isolation. Avoiding the
presence of children.
3.1 Perinatal Death Affects Family Dynamics

In the context of the nuclear family, parents and siblings who live in the same house suffer
the consequences of perinatal death individually. All suffer a grieving process after the loss of
the baby. However, there is also an impact of perinatal death on family dynamics as it is
impossible to separate them from the emotional, physical and psychological state of each of its
members. This theme represents the participants’ perceptions of how family dynamics have
been affected. It includes the role of the father, the siblings and the way the couple’s ties have
altered.

3.1 Kematian Perinatal Mempengaruhi Dinamika Keluarga

Dalam konteks keluarga inti, orang tua dan saudara kandung yang tinggal serumah menderita
akibat kematian perinatal secara individu. Semua mengalami proses berduka setelah
kehilangan bayi. Namun demikian, kematian perinatal juga berdampak pada dinamika
keluarga karena tidak mungkin dipisahkan dari keadaan emosi, fisik dan psikologis masing-
masing anggotanya. Tema ini merepresentasikan persepsi peserta tentang bagaimana dinamika
keluarga terpengaruh. Ini mencakup peran ayah, saudara kandung, dan cara ikatan pasangan
berubah.

“( . . . ) Late at night our looks crossed, and he said: ‘Darling I’ve also been remembering’.
And I: ‘Yes, I know you’ve been remembering’. But he doesn’t want to show that something is
hurting”.

(P-10)

“(..) Larut malam pandangan kami berubah, dan dia berkata: 'Sayang, aku juga telah
mengingatnya'. Dan saya: 'Ya, saya tahu Anda telah mengingatnya'. Tapi dia tidak ingin
menunjukkan bahwa ada sesuatu yang menyakitkan ”.
(P-10)

The Father: The Struggle between Conserving the Stereotypical Protective Role and
Succumbing to Pain

Sang Ayah: Perjuangan antara Melestarikan Peran Pelindung Stereotipikal dan Mengalah pada
Rasa Sakit
Participants perceive the influence of social stereotypes in Spain on the distribution of roles
traditionally given to fathers and mothers within a family. According to these
stereotypes, the responsibility for the protection of the family rests on the father, and in the
case of a painful situation such as PD, they are responsible for caring for the mother.
Traditionally characterized as strong, tough and less sensitive, many fathers do not publicly
show their feelings. Furthermore, some women think that men go through a different grieving
process as they have not gestated the baby and believe that the bond is less strong than that of
women.

Peserta merasakan pengaruh stereotip sosial di Spanyol pada distribusi peran yang secara
tradisional diberikan kepada ayah dan ibu dalam sebuah keluarga. Menurut stereotip ini,
tanggung jawab untuk melindungi keluarga ada pada ayah, dan dalam kasus situasi yang
menyakitkan seperti PD, mereka bertanggung jawab untuk merawat ibu. Secara tradisional
dicirikan sebagai kuat, tangguh dan kurang sensitif, banyak ayah tidak menunjukkan perasaan
mereka di depan umum. Selain itu, beberapa wanita berpikir bahwa pria mengalami proses
berduka yang berbeda karena mereka belum mengandung bayi dan percaya bahwa ikatan
tersebut kurang kuat dibandingkan dengan wanita.

“I think that, even if it affects them . . . the feeling is different. You [the woman] have
experienced it for a long time, that bond that you have created. As it wasn’t born, they have
not felt it and it is different, you have felt it and the man only puts his hand there”.

(P-14, Female)

“Saya pikir, bahkan jika itu mempengaruhi mereka. . . perasaannya berbeda. Anda [wanita]
sudah mengalaminya sejak lama, ikatan yang telah Anda ciptakan. Karena tidak lahir, mereka
tidak merasakannya dan itu berbeda, Anda telah merasakannya dan pria itu hanya meletakkan
tangannya di sana ”.
(P-14, Wanita)

“At least try to be the stronger, because I thought that, ‘Poof! How can I feel as down as she
does . . . ’ Maybe because I am the man (we have) to swallow it and stand on our feet or be a
little stronger or ( . . . ) try to cry apart”.

(P-4, Male)
“Setidaknya cobalah menjadi yang lebih kuat, karena saya pikir, 'Poof! Bagaimana saya bisa
merasa sedih seperti dia. . . 'Mungkin karena saya adalah orangnya (kita harus) menelannya
dan berdiri di atas kaki kita atau menjadi sedikit lebih kuat atau (...) mencoba menangis
terpisah ”.
(P-4, Pria)

However, the implicit demand for fathers to be strong raises tensions because men also go
through a grieving process with very deep emotions, thoughts and feelings. Despite trying to
hide or disguise these feelings, everyday life makes it impossible to disguise reality—a reality
that reflects a suffering similar to that of mothers, and a pain that is difficult to alleviate, to
which the fathers have to add the burden of having to carry both their “weight” and that of
their partner. Participants describe the process by which the father ends up succumbing to pain
as “falling apart”:

Namun, tuntutan tersirat agar ayah menjadi kuat menimbulkan ketegangan karena laki-laki
juga melalui proses berduka dengan emosi, pikiran, dan perasaan yang sangat dalam.
Meskipun berusaha menyembunyikan atau menyamarkan perasaan ini, kehidupan sehari-hari
tidak memungkinkan untuk menyamarkan kenyataan — kenyataan yang mencerminkan
penderitaan yang mirip dengan yang dialami ibu, dan rasa sakit yang sulit untuk diredakan,
yang harus ditambahi beban oleh ayah. untuk membawa "berat" mereka dan pasangan mereka.
Para peserta menggambarkan proses di mana ayah akhirnya menyerah pada rasa sakit sebagai
"hancur berantakan":

“He tried to make himself strong, although occasionally I found him crying in the corner,
where he thought I would not see him ( . . . )”

(P-16)

“Dia mencoba untuk membuat dirinya kuat, meskipun kadang-kadang saya menemukannya
menangis di sudut, di mana dia pikir saya tidak akan melihatnya (..)”
(P-16)
“In the ten years that I’ve been with him I’ve never seen him cry... he tried to become strong
and brave, but he couldn’t, and he fell apart”.

(P-14)

“Selama sepuluh tahun saya bersamanya, saya tidak pernah melihatnya menangis ... dia
mencoba menjadi kuat dan berani, tetapi dia tidak bisa, dan dia hancur berantakan”.
(P-14)

The father participants also perceived the pressure of having to be stronger and ended up
rebelling against this stereotypical requirement. Some no longer showed a frustrated attempt
to be stronger or an inability to maintain appearances. They simply rebel against the stereotype
of a strong and insensitive father:

Para peserta ayah juga merasakan tekanan karena harus menjadi lebih kuat dan akhirnya
memberontak terhadap persyaratan stereotip ini. Beberapa tidak lagi menunjukkan upaya
frustrasi untuk menjadi lebih kuat atau ketidakmampuan untuk mempertahankan penampilan.
Mereka hanya memberontak terhadap stereotip ayah yang kuat dan tidak sensitif:
“But supposedly fathers have to be stronger than them. Stronger than them? Shit! That’s not
true. We fathers have our feelings too, you know?”

(P-7)

Tapi seharusnya ayah harus lebih kuat dari mereka. Lebih kuat dari mereka? Kotoran! Itu
tidak benar. Kami para ayah juga memiliki perasaan kami, Anda tahu? "
(P-7)

The father participants noted that there is a lack of support and a certain abandonment of the
task of looking after them. During hospitalization and immediately after PD, both physical and
psychological care was directed towards the mothers. Although one father reported that he felt
he was very well treated, normally they faced an absence or lack of care. This neglect
hindered the grieving process and made the father’s needs invisible while engulfed in the
strong emotional pain caused by the experience of losing and “burying” a baby. The
invisibility of the fathers’ grief makes it more difficult for them to work on the pain they feel
after the loss.

Ayah peserta mencatat bahwa ada kurangnya dukungan dan pengabaian tugas merawat
mereka. Selama rawat inap dan segera setelah PD, perawatan fisik dan psikologis ditujukan
kepada ibu. Meskipun seorang ayah melaporkan bahwa dia merasa diperlakukan dengan
sangat baik, biasanya mereka menghadapi ketidakhadiran atau kurangnya perhatian.
Pengabaian ini menghambat proses berduka dan membuat kebutuhan ayah tidak terlihat saat
diliputi oleh rasa sakit emosional yang kuat yang disebabkan oleh pengalaman kehilangan dan
"mengubur" bayi. Tidak terlihatnya kesedihan para ayah membuat mereka lebih sulit untuk
mengatasi rasa sakit yang mereka rasakan setelah kehilangan.

“Nobody cared about my husband. Because I was bad and he was more worried about me. So
my husband couldn’t lean on anyone.”
(P-19)

“Tidak ada yang peduli dengan suamiku. Karena aku jahat dan dia lebih mengkhawatirkanku.
Jadi suamiku tidak bisa bersandar pada siapa pun. "
(P-19)
“She was given more attention, when it came to explaining things, when it came to telling
things. Most of the time it was more towards her, ( . . . ) I was invisible to many people.
However, I was also having a hard time.”
(P-20)

“Dia diberi lebih banyak perhatian, ketika harus menjelaskan sesuatu, ketika harus
menceritakan sesuatu. Sebagian besar waktu itu lebih ke arahnya, (...) Saya tidak terlihat oleh
banyak orang. Namun, saya juga mengalami kesulitan. ”
(P-20)

The Elder Siblings: Feeling Overprotected or Abandoned

Together with the parents, the elder children in the family are also generally forgotten by the
care system. In general, they do not receive any kind of support and suffer the consequences
of the grief that their parents are going through; nobody pays attention to them, and nobody
notices whether they need support in order to understand that they have lost a brother or sister.
Some parents’ stories show excessive protection towards their other children for fear of
something happening to them.

The Elder Siblings: Merasa Terlindungi atau Ditinggalkan

Bersama orang tua, anak tertua dalam keluarga juga umumnya dilupakan oleh sistem
pengasuhan. Secara umum, mereka tidak menerima dukungan apa pun dan menderita akibat
kesedihan yang dialami orang tua mereka; tidak ada yang memperhatikan mereka, dan tidak
ada yang memperhatikan apakah mereka membutuhkan dukungan untuk memahami bahwa
mereka telah kehilangan saudara laki-laki atau perempuan. Beberapa cerita orang tua
menunjukkan perlindungan yang berlebihan terhadap anak-anak mereka yang lain karena
takut terjadi sesuatu pada mereka.

“We are more protective and spoil him a little more. For example, before he had to do a job
to get something. But not now. Now he can always easily get something out of me . . . ”

(P-18)
“Kami lebih protektif dan lebih memanjakannya. Misalnya, sebelumnya dia harus melakukan
suatu pekerjaan untuk mendapatkan sesuatu. Tapi tidak sekarang. Sekarang dia selalu bisa
dengan mudah mendapatkan sesuatu dariku. . . ”
(P-18)

“I already know what it is to lose a child, I have to take more care of them. My daughter tells
me: ‘Why do you take so much care of me now?’, and I tell her I’m afraid that something
could happen to her or someone could do something to her; it makes me very scared.”

(P-10)

“Saya sudah tahu apa artinya kehilangan anak, saya harus lebih merawat mereka. Putri saya
memberi tahu saya: 'Mengapa kamu begitu memperhatikan saya sekarang?', Dan saya
mengatakan kepadanya bahwa saya takut sesuatu dapat terjadi padanya atau seseorang dapat
melakukan sesuatu padanya; itu membuatku sangat takut. "
(P-10)

However, other testimonies are in stark contrast to the idea of overprotection: these statements
show parents who have partly neglected their older children because they were so immersed in
their own grief that they gave up their duties and responsibilities as parents of other children.
The pain, suffering and depression which a mother and a father who lose a baby experience
can afflict them not only physically and psychologically but also behaviorally, leading to the
neglect of other children.

Namun, kesaksian lain sangat kontras dengan gagasan overprotection: pernyataan ini
menunjukkan orang tua yang sebagian telah mengabaikan anak-anak mereka yang lebih tua
karena mereka begitu tenggelam dalam kesedihan mereka sendiri sehingga mereka
melepaskan tugas dan tanggung jawab mereka sebagai orang tua dari anak-anak lain. Rasa
sakit, penderitaan, dan depresi yang dialami seorang ibu dan ayah yang kehilangan bayinya
dapat menimpa mereka tidak hanya secara fisik dan psikologis tetapi juga secara perilaku,
yang menyebabkan penelantaran anak-anak lain.

“My children told me, ‘Mommy, you’ve changed a lot, you’ve become indifferent to us, (...) I
understand your pain and everything, but you’ve put us aside, you only cared about the little
girl, and we need you’. And all that was true.”
(P-2)

“Anak-anak saya mengatakan kepada saya, 'Bu, Anda telah banyak berubah, Anda menjadi
acuh tak acuh terhadap kami, (...) Saya memahami rasa sakit Anda dan segalanya, tetapi Anda
telah mengesampingkan kami, Anda hanya peduli tentang hal kecil. gadis, dan kami
membutuhkanmu '. Dan semua itu benar. ”
(P-2)

“ . . . [My children] sometimes dared not talk to me because I didn’t feel like doing anything.
I apologized to them because I turned away from them and became distant from them. I gave
in so much to my pain, and this was the way of living my grief.”

(P-12)

“. . . [Anak-anak saya] terkadang tidak berani berbicara dengan saya karena saya sedang tidak
ingin melakukan apa pun. Saya meminta maaf kepada mereka karena saya berpaling dari
mereka dan menjadi jauh dari mereka. Saya menyerah begitu banyak pada rasa sakit saya, dan
inilah cara menjalani kesedihan saya. "
(P-12)
In most cases, parents failed to inform their children of what had happened. They omitted
information and avoided facing the difficult moment of telling their children what had really
happened. They told them nothing in order to protect themselves, to avoid reviving or
rekindling the suffering, and to protect their children from this suffering and prevent them
from feeling pain; on the other hand, some parents did not explain the situation because they
thought the children were not ready to understand what had happened, postponing the
explanations to when their children were older.

Dalam kebanyakan kasus, orang tua tidak memberi tahu anak-anak mereka tentang apa yang
telah terjadi. Mereka menghilangkan informasi dan menghindari menghadapi saat-saat sulit
untuk memberi tahu anak-anak mereka apa yang sebenarnya terjadi. Mereka tidak mengatakan
apa-apa kepada mereka untuk melindungi diri mereka sendiri, untuk menghindari
menghidupkan kembali atau menyalakan kembali penderitaan, dan untuk melindungi anak-
anak mereka dari penderitaan ini dan mencegah mereka dari rasa sakit; Di sisi lain, sebagian
orang tua tidak menjelaskan keadaannya karena menganggap anak belum siap memahami apa
yang terjadi, sehingga menunda penjelasan ketika anak sudah besar.

“He had a hard time telling our daughter. I remember being there, he told me that ‘Now how
do I explain it to you, how can I tell you?’ But do you know what’s happened? that she hasn’t
seen the baby (...) I haven’t shown her a photo. We chose not to say anything, why make her
suffer?”
(P-19)

“Dia kesulitan memberi tahu putri kami. Saya ingat berada di sana, dia mengatakan kepada
saya bahwa 'Sekarang bagaimana saya menjelaskannya kepada Anda, bagaimana saya bisa
memberi tahu Anda?' Tapi tahukah Anda apa yang terjadi? bahwa dia belum melihat bayinya
(...) Saya belum menunjukkan foto padanya. Kami memilih untuk tidak mengatakan apa-apa,
mengapa membuatnya menderita? ”
(P-19)

“I didn’t say anything, because I thought she was strong, it was hard for me to tell my
daughter things I’m not sure she’ll be able to understand. She asked me what was wrong with
me and I told her that when I was older I would tell them.”

(P-10)
“Saya tidak mengatakan apa-apa, karena saya pikir dia kuat, sulit bagi saya untuk memberi
tahu putri saya hal-hal yang saya tidak yakin dia akan bisa mengerti. Dia bertanya padaku apa
yang salah denganku dan aku memberitahunya bahwa ketika aku lebih besar, aku akan
memberi tahu mereka. ”
(P-10)

In the cases in which the children understood what had happened and had been told about it,
they went through a grieving process, which, according to the parents, was very hard for them
as parents as they could see their children were suffering. Tears, anxiety, and fear were the
common reactions of most of the children, who had been looking forward to having a baby
brother or sister. One father also said that the brother was trying to keep the dead baby in
mind, by remembering, talking about him, representing him as an angel, or drawing him.

Dalam kasus di mana anak-anak memahami apa yang telah terjadi dan telah diberitahu tentang
hal itu, mereka melalui proses berduka, yang menurut orang tua, sangat berat bagi mereka
sebagai orang tua karena mereka dapat melihat anak-anak mereka menderita. Air mata,
kecemasan, dan ketakutan adalah reaksi umum dari sebagian besar anak-anak, yang sangat
menantikan kelahiran adik laki-laki atau perempuan. Seorang ayah juga mengatakan bahwa
saudara laki-lakinya berusaha untuk mengingat bayi yang meninggal itu, dengan mengingat,
membicarakannya, menggambarkannya sebagai malaikat, atau menggambarnya.

“He always remembered and said: “Mom, and my little brother who is now in heaven?
(crying) (...) and then he reminded me of him, and I tried not to cry, but I saw him so small
that we both ended up crying.”

(P-6)

“Dia selalu ingat dan berkata:“ Ibu, dan adik laki-laki saya yang sekarang di surga?
(menangis) (...) dan kemudian dia mengingatkan saya padanya, dan saya mencoba untuk tidak
menangis, tetapi saya melihatnya begitu kecil sehingga kami berdua akhirnya menangis. "
(P-6)

“My son had a hard time. He got rather depressed. He still says his name today and makes
drawings of his brother with ( . . . ), with his wings and such things.”

(P-3)
“Anak saya mengalami masa-masa sulit. Dia agak tertekan. Dia masih menyebut namanya
hari ini dan membuat gambar saudaranya dengan (...), dengan sayapnya dan hal-hal semacam
itu. "
(P-3)

In one case, a participant reported self-protective reactions by the siblings, such as thinking
about avoiding a bond with other living siblings in order to prevent suffering in case of a new
loss.

Dalam satu kasus, seorang peserta melaporkan reaksi perlindungan diri dari saudara kandung,
seperti berpikir untuk menghindari ikatan dengan saudara kandung yang masih hidup untuk
mencegah penderitaan jika terjadi kehilangan baru.

“It affected him a lot, and he told his little brother, who was in my belly, that he was not
going to love him like he had the other one. I think he didn’t want to become fond of him in
case it happened again.”

(P-5)

“Itu sangat memengaruhinya, dan dia memberi tahu adik laki-lakinya, yang ada di dalam
perutku, bahwa dia tidak akan mencintainya seperti dia memiliki yang lain. Saya pikir dia
tidak ingin menyukainya jika itu terjadi lagi. "
(P-5)

New Pregnancies Dominated by Fear: Medicalization and Avoidance

Families who tried to have another baby again after losing a child faced a serious challenge.
The new pregnancy brought on feelings of fear, stress and anxiety regarding the possibility of
losing another baby. The thoughts and feelings of the previous experience emerged and
rekindled fears, and instead of being something happy and wonderful for the family, the new
pregnancy became something that overwhelmed them. Behaviors such as the medicalization
of the pregnancy appeared, with continuous pregnancy controls and excessive abuse of
emergency services out of fear of another loss.
Kehamilan Baru Didominasi oleh Ketakutan: Pengobatan dan Penghindaran

Keluarga yang mencoba memiliki bayi lagi setelah kehilangan anak menghadapi tantangan
yang serius. Kehamilan baru menimbulkan perasaan takut, stres, dan cemas terkait
kemungkinan kehilangan bayi lagi. Pikiran dan perasaan dari pengalaman sebelumnya muncul
dan menghidupkan kembali ketakutan, dan alih-alih menjadi sesuatu yang membahagiakan
dan indah bagi keluarga, kehamilan baru justru menjadi sesuatu yang membuat mereka
kewalahan. Perilaku seperti medikalisasi kehamilan muncul, dengan kontrol kehamilan terus
menerus dan penyalahgunaan layanan darurat yang berlebihan karena takut kehilangan lagi.

“ . . . Even if they told you that everything is going well, every month each time I went to the
ultrasound, well, imagine. I was outside [in the waiting room] and my legs were shaking.”

(P-15)

“. . . Bahkan jika mereka memberi tahu Anda bahwa semuanya baik-baik saja, setiap bulan
setiap kali saya pergi ke ultrasound, bayangkan. Saya berada di luar [di ruang tunggu] dan
kaki saya gemetar. ”
(P-15)
“I went through the next three pregnancies in fear. A pain, [and I went] to the emergency
room; a spot, to the emergency room (...). I went very often, I was very afraid. I was in panic
in case I went through the same thing again.”
(P-16)

“Saya menjalani tiga kehamilan berikutnya dengan ketakutan. Sakit, [dan saya pergi] ke ruang
gawat darurat; tempat, ke ruang gawat darurat (...). Saya sangat sering pergi, saya sangat takut.
Saya panik seandainya saya mengalami hal yang sama lagi. "
(P-16)

Other participants reported that the fear of a repeated painful experience led them to avoid
another pregnancy. Although they recognized that they would like to have another baby or that
it could be positive to experience another pregnancy, the fear of going through the same PD
situation was strong, and they even avoided thinking about it.

Peserta lain melaporkan bahwa ketakutan akan pengalaman menyakitkan yang berulang
membuat mereka menghindari kehamilan lagi. Meskipun mereka menyadari bahwa mereka
ingin memiliki bayi lagi atau mungkin positif mengalami kehamilan lagi, ketakutan akan
mengalami situasi PD yang sama sangat kuat, dan mereka bahkan menghindari
memikirkannya.

“I would like to have a baby sometime, but I don’t want to go through the same thing again. I
especially don’t want my wife to go through it again. I don’t know whether she could take it.
So I avoid these thoughts.”
(P-18)

“Saya ingin punya bayi kapan-kapan, tapi saya tidak ingin mengalami hal yang sama lagi.
Saya khususnya tidak ingin istri saya mengalaminya lagi. Saya tidak tahu apakah dia bisa
menerimanya. Jadi saya menghindari pikiran ini. "
(P-18)

“It may be positive for me to get pregnant again, but on the other hand I am very scared of
going through that situation again. I don’t want to go through that situation again, it
distresses me to think about it.”
(P-19)

“Mungkin positif bagi saya untuk hamil lagi, tetapi di sisi lain saya sangat takut mengalami
situasi itu lagi. Saya tidak ingin melalui situasi itu lagi, itu membuat saya tertekan untuk
memikirkannya. "
(P-19)

The Strengthening and Weakening of the Couple’s Bond

This difficult experience was able to strengthen the bonds of the majority of the
participants. Some reported what happened as something that they had to live through
together. Others, perceiving the risk to the couple, consciously decided to strengthen their
bond; i.e., to stick together. Thus, athepainful experience ended up strengthening the bond of
the couples who decided to face it together. This was recounted by two participants:

Penguatan dan Lemahnya Ikatan Pasangan

Pengalaman sulit ini mampu memperkuat ikatan mayoritas peserta. Beberapa melaporkan apa
yang terjadi sebagai sesuatu yang harus mereka jalani bersama. Yang lainnya, melihat risiko
bagi pasangan itu, secara sadar memutuskan untuk memperkuat ikatan mereka; yaitu, untuk
tetap bersatu. Dengan demikian, pengalaman menyakitkan tersebut akhirnya mempererat
ikatan pasangan yang memutuskan untuk menghadapinya bersama. Ini diceritakan oleh dua
peserta:

“We’ve talked a lot, and I’ve told him: ‘What has happened to us is something that we’ve
been through together’. I have the feeling that it has brought us much closer.”
(P-20, Male)

“Kami telah banyak berbicara, dan saya telah mengatakan kepadanya: 'Apa yang terjadi pada
kami adalah sesuatu yang telah kami lalui bersama'. Saya merasa itu telah membawa kami
lebih dekat. "
(P-20, Pria)

“We clung more to each other and became stronger. (...) We stuck together, [we think:] ‘do
they want to hurt us? Well, nobody will be able to.’ Because I know this can break a marriage
or a family.”
(P-16, Female)

“Kami lebih bergantung satu sama lain dan menjadi lebih kuat. (...) Kami tetap bersama,
[kami pikir:] ‘apakah mereka ingin menyakiti kami? Yah, tidak ada yang bisa. 'Karena aku
tahu ini bisa merusak pernikahan atau keluarga. "
(P-16, Wanita)

However, in the first months after the PD, arguments and disagreements became more
frequent. This seems to be because, according to the participants, each member of the couple
faces the pain and stress of the PD in their own way. Pain, together with almost continuous
emotional stress and tension, triggers quarrels and disagreements.

Namun, pada bulan-bulan pertama setelah PD, pertengkaran dan ketidaksepakatan semakin
sering terjadi. Ini sepertinya karena, menurut para peserta, setiap anggota pasangan
menghadapi rasa sakit dan stres PD dengan caranya sendiri. Rasa sakit, bersama dengan stres
dan ketegangan emosional yang hampir terus-menerus, memicu pertengkaran dan
perselisihan.

“We have more arguments than before, many more. Every time when I lose my temper
because I am a little low or depressed or down, we argue.”
(P-4, Male)

“Kami memiliki lebih banyak argumen dari sebelumnya, lebih banyak lagi. Setiap kali ketika
saya marah karena saya sedikit sedih atau depresi atau sedih, kami berdebat. "
(P-4, Pria)

“... I have my own character, and we didn’t see it in the same way. And he shouted and said
to me: Stop, don’t carry on! And interrupted me. (...) And I was enraged because I get angry
when people shout at me.”
(P-19, Female)

“... Saya memiliki karakter saya sendiri, dan kami tidak melihatnya dengan cara yang sama.
Dan dia berteriak dan berkata kepada saya: Berhenti, jangan lanjutkan! Dan menyela saya. (...)
Dan saya sangat marah karena saya marah ketika orang-orang meneriaki saya. "
(P-19, Wanita)

The couple’s sexual relations also changed. During the grieving process, a lack of sexual
desire was a common point in almost all of those interviewed. This, coupled with the fear of a
new pregnancy and fear of going through the same thing again, made sexual intercourse null
or minimal, although over time this improved.

Hubungan seksual pasangan itu juga berubah. Selama proses berduka, kurangnya hasrat
seksual merupakan hal yang umum di hampir semua orang yang diwawancarai. Hal ini,
ditambah dengan ketakutan akan kehamilan baru dan ketakutan akan mengalami hal yang
sama lagi, membuat hubungan seksual batal atau minimal, meskipun seiring waktu hal ini
membaik.
“Well... we were doing nothing for a while because I didn’t feel like it, how can you feel like
it? You have your head somewhere else... when you’re sad, who is going to feel like it?”

(P-1)

“Yah ... kami tidak melakukan apa-apa untuk sementara waktu karena saya tidak
menyukainya, bagaimana Anda bisa merasakannya? Anda memiliki kepala di tempat lain ...
ketika Anda sedih, siapa yang akan merasakannya? ”
(P-1)

“At first I didn’t want to have sex, I didn’t feel like it, and I thought, what if I got pregnant? I
didn’t feel like anything, I was afraid to go through it again, so I avoided sleeping with him.”

(P-6)

“Awalnya saya tidak ingin berhubungan seks, saya tidak menyukainya, dan saya berpikir,
bagaimana jika saya hamil? Aku tidak merasa seperti apa pun, aku takut untuk mengalaminya
lagi, jadi aku menghindari tidur dengannya. "
(P-6)

The Social Environment of the Parents is Severely Affected After Perinatal Death

Lingkungan Sosial Orang Tua Sangat Terpengaruh Setelah Kematian Perinatal

This section covers three sub-themes that reflect how PD affects the parents’ social sphere.
The impact of the loss reaches the members of the extended family as well as work and social
environments. Both seeing other children and the use of stereotyped messages of comfort
intensify the pain. In addition, stereotyped messages are not effective because they denote an
intrinsic banalization of the loss or the disallowance of grief. All this leads to parents avoiding
social contact.

Bagian ini mencakup tiga sub-tema yang mencerminkan bagaimana PD mempengaruhi

lingkungan sosial orang tua. Dampak kerugian mencapai anggota keluarga besar serta
lingkungan kerja dan sosial. Baik melihat anak-anak lain maupun penggunaan pesan stereotip
tentang kenyamanan meningkatkan rasa sakit. Selain itu, pesan stereotip tidak efektif karena
menunjukkan dangkal intrinsik atas kehilangan atau tidak adanya kesedihan. Semua ini
membuat orang tua menghindari kontak sosial.

“We can’t do anything because there are babies everywhere, pregnant women everywhere . . .
And we get depressed. So you don’t know where to go, and you lock yourself in the house.”
(P-17)

“Kami tidak bisa berbuat apa-apa karena bayi di mana-mana, ibu hamil di mana-mana. . . Dan
kita mengalami depresi. Jadi, Anda tidak tahu harus pergi ke mana, dan Anda mengunci diri di
dalam rumah. "
(P-17)

Impact of the Perinatal Death on the Extended Family

The extended family, understood as the network of relatives—especially blood relatives—

which extends beyond the domestic group, suffers the impact of the pain of their relatives and
the death of a baby they did not get to know. Participants report receiving condolence and
support from their relatives and that they perceived double pain for the mother/father and for
the deceased baby:

Dampak Kematian Perinatal pada Keluarga Besar

Keluarga besar, yang dipahami sebagai jaringan kerabat — terutama kerabat sedarah — yang
melampaui kelompok domestik, mengalami dampak rasa sakit kerabat mereka dan kematian
bayi yang tidak mereka kenal. Peserta melaporkan menerima belasungkawa dan dukungan
dari kerabat mereka dan bahwa mereka merasakan sakit ganda untuk ibu / ayah dan untuk
almarhum bayi:

“The family called us, and they worried about us, my sister, my aunt (pause) saw that she had
hit rock bottom, and that’s why they called (...). I also imagine that they would be feeling bad.
It was their nephew, and suddenly they don’t have him. They would call me and them (...) I
know they had a bad time.”

(P-7)
“Keluarga menelepon kami, dan mereka khawatir tentang kami, saudara perempuan saya, bibi
saya (jeda) melihat bahwa dia telah mencapai titik terendah, dan itulah mengapa mereka
menelepon (...). Saya juga membayangkan bahwa mereka akan merasa tidak enak. Itu adalah
keponakan mereka, dan tiba-tiba mereka tidak memilikinya. Mereka akan menelepon saya dan
mereka (...) Saya tahu mereka mengalami waktu yang buruk. "
(P-7)

“I had never seen my mother (paternal grandmother) so bad, so bad ( . . . ).”

(P-9)

"Saya belum pernah melihat ibu saya (nenek dari pihak ayah) begitu buruk, begitu buruk (...)."
(P-9)

One participant recounted how her mother (the grandmother of the deceased fetus) developed
her own grief for a similar loss decades before when she had no opportunity to experience
grief. Losing her grandchild enabled her to remember her loss and resolve a pending grief.

Seorang peserta menceritakan bagaimana ibunya (nenek dari janin yang meninggal)
mengembangkan kesedihannya sendiri untuk kehilangan yang sama beberapa dekade
sebelumnya ketika dia tidak memiliki kesempatan untuk mengalami kesedihan. Kehilangan
cucunya memungkinkan dia untuk mengingat kehilangannya dan menyelesaikan kesedihan
yang tertunda.

“My mother lost a daughter and had no chance to grieve. She has grieved for her own
daughter with her granddaughter. She had lost a daughter who had been stillborn thirty-five
years before, and they didn’t want to teach her to grieve. They buried the baby immediately.
So it’s been good for her, to mourn now.”

(P-13)

“Ibu saya kehilangan seorang putri dan tidak punya kesempatan untuk berduka. Dia telah
berduka untuk putrinya sendiri dengan cucunya. Dia telah kehilangan seorang putri yang telah
meninggal tiga puluh lima tahun sebelumnya, dan mereka tidak ingin mengajarinya untuk
berduka. Mereka segera menguburkan bayi itu. Jadi itu baik untuknya, berduka sekarang. "
(P-13)

Impact on Work: Lose a Child, Lose a Job

Undoubtedly, the work environment of people suffering from PD is damaged. People in their
grieving process reported a decrease in their performance at work, causing, in two cases, the
loss of employment. In addition to losing a child, they had to face job loss and its
consequences, increasing their pain, anguish, stress and suffering. The pain experienced by the
people who lost a baby lowered their ability to concentrate, and this, together with the
deprivation of the quantity and quality of sleep, explained how their performance worsened.

Dampak pada Pekerjaan: Kehilangan Anak, Kehilangan Pekerjaan

Tak pelak, lingkungan kerja warga yang menderita PD rusak. Orang-orang yang sedang
berduka melaporkan penurunan kinerja mereka di tempat kerja, yang menyebabkan, dalam
dua kasus, hilangnya pekerjaan. Selain kehilangan anak, mereka harus menghadapi kehilangan
pekerjaan dan konsekuensinya, meningkatkan rasa sakit, kesedihan, stres dan penderitaan
mereka. Rasa sakit yang dialami oleh orang yang kehilangan bayi menurunkan kemampuan
mereka untuk berkonsentrasi, dan ini, bersama dengan kurangnya kuantitas dan kualitas tidur,
menjelaskan bagaimana kinerja mereka memburuk.
“It gave me bad depression, and I lost my job. I lost my job because they had to give me more
days off, and they told me that they couldn’t wait any longer, and so I lost my job (...)
everything combined, my baby died, and they fired me... It was one problem after another.”

(P-2)

“Itu membuat saya depresi parah, dan saya kehilangan pekerjaan. Saya kehilangan pekerjaan
karena mereka harus memberi saya lebih banyak hari libur, dan mereka mengatakan kepada
saya bahwa mereka tidak bisa menunggu lebih lama lagi, jadi saya kehilangan pekerjaan saya
(...) semuanya digabungkan, bayi saya meninggal, dan mereka memecat saya. .. Itu adalah
masalah satu demi satu. ”
(P-2)

For one father, leaving work was the result of a choice between staying with his partner or
going to work in an unsuitable physical condition, suffering from insomnia or a lack of
concentration.

Bagi seorang ayah, berhenti bekerja adalah hasil dari pilihan antara tinggal dengan
pasangannya atau pergi bekerja dalam kondisi fisik yang tidak sesuai, menderita insomnia,
atau kurang konsentrasi.

“I lost the habit of sleeping, I had to choose, let’s say I had to quit my job to be with my wife.
(...) my wife wanted me to start... that I went to work, right? (...) I was going to work without
sleep day after day and working, so think of it, working without sleep and with my head in
another place.”

(P-11)

“Saya kehilangan kebiasaan tidur, saya harus memilih, katakanlah saya harus berhenti dari
pekerjaan saya untuk bersama istri saya. (...) istri saya ingin saya memulai ... bahwa saya pergi
bekerja, bukan? (...) Saya akan bekerja tanpa tidur hari demi hari dan bekerja, jadi pikirkanlah,
bekerja tanpa tidur dan dengan kepala saya di tempat lain. "
(P-11)
Other participants presented their work as a means of escape or isolation from other
environments such as parks or family gatherings, where the elements that recall the lost child
are present.

Peserta lain mempresentasikan karya mereka sebagai sarana pelarian atau isolasi dari
lingkungan lain seperti taman atau tempat berkumpul keluarga, di mana unsur-unsur yang
mengingatkan anak hilang hadir.

“You are looking for your escape routes, either working ( . . . ) You isolate yourself a little
from all of that because what you want is to avoid environments that remind you of your
child.”

(P-5)

"Anda mencari jalan keluar Anda, entah bekerja (..) Anda mengisolasi diri Anda sedikit dari
semua itu karena yang Anda inginkan adalah menghindari lingkungan yang mengingatkan
Anda pada anak Anda."
(P-5)

Social Impact: Between Disenfranchised Grief and the Remembered Pain

Dampak Sosial: Antara Duka yang Dicabut Haknya dan Rasa Sakit yang Diingat

Parents who have suffered the death of their babies return to their social environment, beyond
the family and work environment, where they must complete the tasks of working through
their grief and adapting to life without the lost baby. In this environment, they may find that
the attitudes and responses of their acquaintances to their pain do not recognize or banalize
PD. Thus, the pain of the parents becomes invisible and is minimized with comments
including that they had not got to know their dead baby or that he or she was very small.
Orang tua yang mengalami kematian bayinya kembali ke lingkungan sosialnya, di luar
keluarga dan lingkungan kerja, dimana mereka harus menyelesaikan tugas mengatasi
kesedihannya dan beradaptasi dengan kehidupan tanpa kehilangan bayi. Dalam lingkungan
ini, mereka mungkin menemukan bahwa sikap dan tanggapan kenalan mereka terhadap rasa
sakit mereka tidak mengenali atau merendahkan PD. Dengan demikian, rasa sakit orang tua
menjadi tidak terlihat dan diminimalkan dengan komentar-komentar antara lain bahwa mereka
tidak pernah mengenal bayi mereka yang telah meninggal atau bahwa dia masih sangat kecil.

“Then people tell you: ‘it’s better that it happened when the baby was three days old and not
three months’, can you believe it? As if it hurt more before or after, you know? People are
incredible.”

(P-7)

“Lalu orang-orang memberi tahu Anda: 'Lebih baik itu terjadi ketika bayi berusia tiga hari dan
bukan tiga bulan', bisakah Anda mempercayainya? Seolah-olah lebih sakit sebelum atau
sesudah, Anda tahu? Orang-orang luar biasa. "
(P-7)

Participants perceive that it is not socially recognized that the bond with babies begins from
the beginning of pregnancy, rather that this relationship is related to the birth and presence of
the newborn baby in the family. Parents experience grief with suffering and are also
disenfranchised by the social environment to which they belong, which makes it difficult for
them to express their grief naturally. Underestimating grief could hamper fathers’ and
mothers’ ability to take actions toward a healthy grief (for example, accepting reality).

Partisipan memandang bahwa tidak disadari secara sosial bahwa ikatan dengan bayi dimulai
dari awal kehamilan, melainkan hubungan ini terkait dengan kelahiran dan kehadiran bayi
baru lahir dalam keluarga. Orang tua mengalami kesedihan dengan penderitaan dan juga
kehilangan haknya oleh lingkungan sosial tempat mereka berada, yang membuat mereka sulit
untuk mengungkapkan kesedihan mereka secara alami. Meremehkan kesedihan dapat
menghambat kemampuan ayah dan ibu untuk mengambil tindakan menuju kesedihan yang
sehat (misalnya, menerima kenyataan).
“When I talk with friends, family, I try to make the effort, ( . . . ), to talk about my son and
that I have been a father. Although nobody recognizes this, I am sure, I have felt responsible
as a father, I have had the feeling of being a father.”

(P-20)

“Ketika saya berbicara dengan teman, keluarga, saya mencoba melakukan upaya, (...), untuk
berbicara tentang putra saya dan bahwa saya telah menjadi seorang ayah. Meskipun tidak ada
yang mengenali ini, saya yakin, saya merasa bertanggung jawab sebagai seorang ayah, saya
memiliki perasaan sebagai seorang ayah. "
(P-20)

It can be painful and strange for mothers and fathers that their acquaintances may behave as if
nothing had happened; this is not due to a need for the validation of pain but rather because
they interpret the absence of mention of the loss as not recognizing it. A mother recounted the
following:

Mungkin menyakitkan dan aneh bagi ibu dan ayah bahwa kenalan mereka mungkin
berperilaku seolah-olah tidak terjadi apa-apa; hal ini bukan karena kebutuhan untuk validasi
rasa sakit tetapi karena mereka menafsirkan tidak adanya penyebutan kerugian sebagai tidak
mengakuinya. Seorang ibu menceritakan hal berikut:

“I don’t need anyone to validate my grief. But people frequently behave as if nothing had
happened to you. People say that ‘as it was a baby you didn’t know... you know? You didn’t
want it’ (pause) and I said: ‘Let’s see, didn’t you see my belly? ( . . . ) You can’t behave as if,
as if nothing had happened.”

(P-13)

“Saya tidak membutuhkan siapa pun untuk membuktikan kesedihan saya. Tetapi orang sering
bersikap seolah-olah tidak terjadi apa-apa pada Anda. Orang-orang mengatakan bahwa 'karena
itu adalah bayi yang tidak Anda kenal ... Anda tahu? Anda tidak menginginkannya '(jeda) dan
saya berkata:' Coba lihat, apa kamu tidak melihat perut saya? .
(P-13)
This non-recognition by the community increases with phrases, comments and actions that, far
from helping parents, cause them increased pain and suffering. They hear hurtful phrases that
downplay the death of their baby, increasing or blocking the pain they suffer, and unpleasant
comments that undermine the loss by downplaying it or considering that their painful
experience is not unique, or suggesting that another baby will dissipate the pain for the lost
baby.

Ketidaksadaran oleh komunitas ini meningkat dengan frase, komentar dan tindakan yang, jauh
dari membantu orang tua, menyebabkan mereka semakin menderita dan menderita. Mereka
mendengar ungkapan menyakitkan yang meremehkan kematian bayi mereka, meningkatkan
atau memblokir rasa sakit yang mereka derita, dan komentar tidak menyenangkan yang
merongrong kehilangan dengan meremehkannya atau menganggap bahwa pengalaman
menyakitkan mereka tidak unik, atau menyarankan bahwa bayi lain akan menghilangkan rasa
sakitnya. bayi yang hilang.

“I was told: ‘Ah, don’t worry, in a year or two you will have another one’. ‘The same thing
happened to my cousin, to my neighbor . . . ’ I don’t care what happened to your cousin or
your neighbor! I care about myself, and what has happened to me hurts.”

(P-8)

“Saya diberitahu: 'Ah, jangan khawatir, dalam satu atau dua tahun Anda akan memiliki satu
sama lain'. "Hal yang sama terjadi pada sepupu saya, tetangga saya. . . 'Saya tidak peduli apa
yang terjadi dengan sepupu atau tetangga Anda! Saya peduli pada diri saya sendiri, dan apa
yang terjadi pada saya menyakitkan.
(P-8)

Perhaps because of this, the majority of the families in the process of grieving preferred to live
alone, isolated from a community which sometimes failed to understand their pain. Some
participants reported that they isolated themselves for a while, avoiding going out and stayed
at home or with their closest relatives more—they tried to work through the experience alone.
Mungkin karena itu, sebagian besar keluarga yang sedang berduka lebih memilih hidup
sendiri, terisolasi dari komunitas yang terkadang gagal memahami penderitaan mereka.
Beberapa peserta melaporkan bahwa mereka mengisolasi diri untuk sementara waktu,
menghindari keluar dan lebih sering tinggal di rumah atau dengan kerabat terdekat mereka —
mereka mencoba untuk bekerja melalui pengalaman itu sendiri.

“It makes you shut yourself up a little, that is, go out less, feel like being alone, withdraw a
little (...). It has also isolated us from friends (...). My partner and I shut ourselves up at home
more, inside ourselves.”

(P-4)

“Itu membuat Anda sedikit mengurung diri, yaitu, lebih sedikit keluar, merasa seperti
sendirian, mundur sedikit (...). Itu juga telah mengisolasi kita dari teman (...). Saya dan mitra
saya lebih banyak mengurung diri di rumah, di dalam diri sendiri. "
(P-4)

Other participants reported that they suffered stress by exposing themselves to social
situations that reminded them of their deceased babies. Birthdays, baptisms, walks in the park
or meeting pregnant mothers were situations in which it was common to see children of all
ages including babies. These situations reminded them of their dead baby and were a source of
stress for parents. They were difficult situations that they tried to avoid in an attempt not to
increase their suffering.

Peserta lain melaporkan bahwa mereka mengalami stres dengan mengekspos diri mereka pada
situasi sosial yang mengingatkan mereka pada almarhum bayi mereka. Ulang tahun,
pembaptisan, jalan-jalan di taman, atau bertemu ibu hamil adalah situasi di mana umum untuk
melihat anak-anak dari segala usia termasuk bayi. Situasi ini mengingatkan mereka pada
kematian bayi mereka dan menjadi sumber stres bagi orang tua. Mereka adalah situasi sulit
yang mereka coba hindari dalam upaya untuk tidak meningkatkan penderitaan mereka.

“The horrible birthdays, (sob) but the worst thing is Christmas, when we get together with my
nephews and nieces. (...). Because you see the children and say: ‘Oh no! Our baby could have
been here’”

(P-12)
“Ulang tahun yang mengerikan, (terisak) tapi yang terburuk adalah Natal, saat kami
berkumpul dengan keponakan-keponakan saya. (...). Karena Anda melihat anak-anak dan
berkata: 'Oh tidak! Bayi kita bisa saja ada di sini '"
(P-12)

“Wherever you go... you are reminded, and the child is not there, not there [silence]. It’s not
there, and it’s frustrating (...). So we avoided being in places where there were children. It
brought us the anxiety of remembering again... We had lost ours two months before”

(P-5)

“Ke mana pun Anda pergi ... Anda diingatkan, dan anak itu tidak ada di sana, tidak di sana
[diam]. Itu tidak ada, dan itu membuat frustrasi (...). Jadi kami menghindari berada di tempat
di mana ada anak-anak. Itu membuat kami cemas mengingat lagi ... Kami telah kehilangan
milik kami dua bulan sebelumnya "
(P-5)

4. Discussion

The aim of this study was to describe and understand the impact of perinatal death on parents’
social and family life. Using Worden’s theoretical framework [35] has allowed us to approach
environmental factors (i.e., social and familiar) that play an important role in the process of
adaptation of those who have suffered a loss due to PD. However, our study suggests that the
environment is not only the physical space to which people adapt; the parents’ environment
also suffers the impact of the PD and contains elements that can facilitate or obstruct the
adaptation process. The results of this study suggest the need to reinterpret the role of the
father, which is traditionally relegated by society and professionals to a secondary role in
relation to the children [28]. In line with other studies [45,46], we can see that fathers perceive
that their pain is undervalued. However, in this study, mothers also openly acknowledge that
fathers fall apart and give up their protective role in order to work through their grief. In
addition, men—culturally recognized as the pillar of support for mothers and the family [47]
—reported that they needed someone who they could ask about their condition or get
emotional support from because, as shown in other studies, they noticed that attention was
centered
on the mother [47,48]. This may make some fathers feel marginalized from the grieving
process [11] and hinder their socialization, which is needed for a successful grief process [35].
This invisibility of the father’s grief may be due to the fact that, when pregnant, the woman
has a physical connection to the baby while the father’s link is only mental [49,50]. Health
professionals and the community ignore and disallow the father´s grieving for PD although it
has been shown that PD does have repercussions for fathers [46]. It is necessary to determine
the needs of fathers [51,52] and clearly recognize their grief [38,39,47,53]. Although the
sample of fathers in this study as more limited than that of mothers, our study investigates the
experiences and perceptions of both sexes.

4. Diskusi
Tujuan dari penelitian ini adalah untuk mendeskripsikan dan memahami dampak kematian
perinatal terhadap kehidupan sosial dan keluarga orang tua. Menggunakan kerangka teoritis
Worden [35] telah memungkinkan kami untuk mendekati faktor lingkungan (yaitu, sosial dan
familiar) yang memainkan peran penting dalam proses adaptasi dari mereka yang menderita
kerugian karena PD. Namun, penelitian kami menunjukkan bahwa lingkungan bukan hanya
ruang fisik tempat orang beradaptasi; Lingkungan orang tua juga terkena dampak PD dan
mengandung unsur-unsur yang dapat memfasilitasi atau menghambat proses adaptasi. Hasil
penelitian ini menunjukkan perlunya menafsirkan kembali peran ayah, yang secara tradisional
diturunkan oleh masyarakat dan profesional ke peran sekunder dalam hubungannya dengan
anak-anak [28]. Sejalan dengan penelitian lain [45,46], kita dapat melihat bahwa para ayah
merasa bahwa rasa sakit mereka tidak dihargai. Namun, dalam penelitian ini, para ibu juga
secara terbuka mengakui bahwa ayah berantakan dan melepaskan peran pelindung mereka
untuk mengatasi kesedihan mereka. Selain itu, pria — secara budaya diakui sebagai pilar
dukungan bagi ibu dan keluarga [47] —melaporkan bahwa mereka membutuhkan seseorang
yang dapat mereka tanyakan tentang kondisinya atau mendapatkan dukungan emosional
karena, seperti yang ditunjukkan dalam penelitian lain, mereka memperhatikan perhatian itu
berpusat pada ibu [47,48]. Hal ini mungkin membuat beberapa ayah merasa terpinggirkan dari
proses berduka [11] dan menghalangi sosialisasi mereka, yang diperlukan untuk proses
berduka yang sukses [35]. Kesedihan ayah yang tidak terlihat ini mungkin disebabkan oleh
fakta bahwa, ketika hamil, wanita tersebut memiliki hubungan fisik dengan bayinya
sedangkan hubungan ayah hanya mental [49,50]. Para profesional kesehatan dan masyarakat
mengabaikan dan melarang kesedihan ayah karena PD meskipun telah terbukti bahwa PD
memang berdampak pada ayah [46]. Penting untuk menentukan kebutuhan ayah [51,52] dan
secara jelas mengenali kesedihan mereka [38,39,47,53]. Meskipun sampel ayah dalam
penelitian ini lebih terbatas daripada ibu, penelitian kami menyelidiki pengalaman dan
persepsi kedua jenis kelamin.

PD also impacts siblings, who are sometimes omitted or given incorrect information about
what has happened [54]. In this study, the parents reported that they chose to omit
information out of a sense of protection, although in other cases they decided to wait for the
children to mature so that they could understand what had happened. However, it is necessary
that minors can also grieve for the death of their siblings [55], and this starts from recognizing
the loss instead of denying it [35]. Healthcare providers must take into account the siblings’
needs and feelings [56]. When perinatal death occurs, parents change their way of caring, and
this affects their children [57]. Some parents in this study reported that they were absent and
neglected their older children and felt guilty about it. As has been previously reported, other
parents reported that they overprotected their children out of fear of something happening to
them [20,21,58,59].

PD juga berdampak pada saudara kandung, yang terkadang dihilangkan atau diberi informasi
yang salah tentang apa yang telah terjadi [54]. Dalam studi ini, orang tua melaporkan bahwa
mereka memilih untuk menghilangkan informasi demi perlindungan, meskipun dalam kasus
lain mereka memutuskan untuk menunggu anak-anak menjadi dewasa agar mereka dapat
memahami apa yang telah terjadi. Namun, penting bahwa anak di bawah umur juga bisa
berduka atas kematian saudara mereka [55], dan ini dimulai dari mengakui kehilangan alih-
alih menyangkalnya [35]. Penyedia layanan kesehatan harus mempertimbangkan kebutuhan
dan perasaan saudara kandung [56]. Ketika kematian perinatal terjadi, orang tua mengubah
cara merawat mereka, dan ini mempengaruhi anak-anak mereka [57]. Beberapa orang tua
dalam penelitian ini melaporkan bahwa mereka tidak hadir dan mengabaikan anak-anak
mereka yang lebih tua dan merasa bersalah karenanya. Seperti yang telah dilaporkan
sebelumnya, orang tua lain melaporkan bahwa mereka terlalu melindungi anak-anak mereka
karena takut sesuatu terjadi pada mereka [20,21,58,59].

PD has repercussions in subsequent pregnancies [60], which is a complex situation that

requires health professionals’ support [61]. In some studies, mothers and fathers expressed
that a new pregnancy would decrease their pain and emotional emptiness [19,62]. However,
our study participants fear that a new pregnancy would have a similar outcome and this causes
some parents to dismiss that possibility. In this regard, a new pregnancy without the mother
being ready can cause attachment problems with the next child [25,63]. Participants who did
become pregnant after the PD reported that they went to emergency services more often in the
following pregnancies, out of fear and concern that the PD would recur. Other studies suggest
that fear and anguish of a new PD increases visits to healthcare services [15,64,65].

PD memiliki dampak pada kehamilan berikutnya [60], yang merupakan situasi kompleks yang
membutuhkan dukungan profesional kesehatan [61]. Dalam beberapa penelitian, ibu dan ayah
menyatakan bahwa kehamilan baru akan mengurangi rasa sakit dan kekosongan emosional
mereka [19,62]. Namun, peserta penelitian kami khawatir bahwa kehamilan baru akan
memiliki hasil yang serupa dan ini menyebabkan beberapa orang tua mengabaikan
kemungkinan itu. Dalam hal ini, kehamilan baru tanpa ibu yang siap dapat menyebabkan
masalah keterikatan pada anak berikutnya [25,63]. Peserta yang hamil setelah PD melaporkan
bahwa mereka lebih sering pergi ke layanan darurat pada kehamilan berikutnya, karena takut
dan khawatir PD akan kambuh. Studi lain menunjukkan bahwa ketakutan dan kesedihan dari
PD baru meningkatkan kunjungan ke layanan kesehatan [15,64,65].

PD has an important impact on the dynamics of the couple’s relationship [39,66]. Previous
studies show that abortion or PD situations increase disputes between couples [67] and
increases the probability of a divorce [68], especially when one of the couple does not feel the
necessary support from their partner [23]. However, this study suggests that the PD served as
a stimulus to strengthen the bond of the couple (face adversity together) but that it also
increased the number of arguments between the couple. In accordance with other studies in
which the sexual life of couples was shown to change after PD or abortion [69], sexual desire
and sexual intercourse decreased according to the participants of this study.

PD memiliki dampak penting pada dinamika hubungan pasangan [39,66]. Studi sebelumnya
menunjukkan bahwa aborsi atau situasi PD meningkatkan perselisihan antara pasangan [67]
dan meningkatkan kemungkinan perceraian [68], terutama ketika salah satu pasangan tidak
merasakan dukungan yang diperlukan dari pasangan mereka [23]. Namun, studi ini
menunjukkan bahwa PD berfungsi sebagai stimulus untuk memperkuat ikatan pasangan
(menghadapi kesulitan bersama) tetapi juga meningkatkan jumlah pertengkaran di antara
pasangan. Sesuai dengan penelitian lain di mana kehidupan seksual pasangan terbukti berubah
setelah PD atau aborsi [69], hasrat seksual dan hubungan seksual menurun menurut para
peserta penelitian ini.

Perinatal death and grief not only affect the nuclear family but also the extended family and
the parents’ social environment [70]. Grandparents’ expectations and hopes for the
arrival of a new grandchild are jeopardized, which could have consequences that need to be
addressed and understood [71,72]. Grandparents and close family members play a crucial role
in social support and communication with parents [73]. Perinatal grief in grandparents and
close relatives is a field to be investigated since this could help mitigate the consequences of
PD. Therefore, the design of strategies to support family members is crucial [74].

Kematian dan kesedihan perinatal tidak hanya mempengaruhi keluarga inti tetapi juga
keluarga besar dan
lingkungan sosial orang tua [70]. Harapan dan harapan kakek-nenek untuk kedatangan cucu
baru terancam, yang dapat memiliki konsekuensi yang perlu ditangani dan dipahami [71,72].
Kakek-nenek dan anggota keluarga dekat memainkan peran penting dalam dukungan sosial
dan komunikasi dengan orang tua [73]. Duka cita perinatal pada kakek nenek dan kerabat
dekat adalah bidang yang harus diselidiki karena hal ini dapat membantu mengurangi
konsekuensi PD. Oleh karena itu, desain strategi untuk mendukung anggota keluarga sangat
penting [74].

The impact of PD extends to the workplace; a study [75] conducted in the UK calculated the
losses linked to absenteeism and the decrease in productivity. In contrast, in this study,
participants reported their own decisions to leave their job as well as cases of being dismissed
due to increased absenteeism. However, an increase in dedication when using work as a
refuge was also shown. The community (social context) of the parents perceives the PD in a
totally different way from the parents themselves [76]. The recognition of grief is often
avoided and the pain of the parents is silenced, resulting in a sense of unauthorized grieving
[62,77]. This taboo and undervaluation of grief was perceived by the mothers and fathers in
the study when they received comments that trivialized their
pain. This made this type of grief invisible, increasing the sensation of stigma [78,79]. Some
families reported that there were people who shunned them and avoided talking about the
subject, since this grief is different from other types of loss: no flowers are given, no cards are
offered, there are no visits and there are no religious rituals to validate the grief [25].
However, making this problem visible and raising awareness in society may be important for
parents [80,81].

Dampak PD meluas ke tempat kerja; sebuah studi [75] yang dilakukan di Inggris menghitung
kerugian yang terkait dengan ketidakhadiran dan penurunan produktivitas. Sebaliknya, dalam
penelitian ini, partisipan melaporkan keputusan mereka sendiri untuk keluar dari pekerjaannya
serta kasus-kasus pemecatan karena meningkatnya ketidakhadiran. Akan tetapi, peningkatan
dedikasi saat menggunakan pekerjaan sebagai perlindungan juga terlihat. Komunitas (konteks
sosial) orang tua memandang PD dengan cara yang sama sekali berbeda dari orang tua itu
sendiri [76]. Pengakuan kesedihan sering dihindari dan rasa sakit orang tua dibungkam,
mengakibatkan rasa berduka yang tidak sah [62,77]. Tabu dan meremehkan kesedihan ini
dirasakan oleh para ibu dan ayah dalam penelitian tersebut ketika mereka menerima komentar
yang meremehkan rasa sakit mereka. Hal ini membuat jenis kesedihan ini tidak terlihat,
meningkatkan sensasi stigma [78,79]. Beberapa keluarga melaporkan bahwa ada orang yang
menjauhi mereka dan menghindari pembicaraan tentang hal tersebut, karena kesedihan ini
berbeda dengan jenis kehilangan lainnya: tidak ada bunga yang diberikan, tidak ada kartu
yang ditawarkan, tidak ada kunjungan dan tidak ada ritual keagamaan untuk disahkan.
kesedihan [25]. Namun, membuat masalah ini terlihat dan meningkatkan kesadaran di
masyarakat mungkin penting bagi orang tua [80,81].

The main limitation of this study is that parents were interviewed while they were grieving
for PD, which includes fetal and postnatal death—two different situations that are likely to
trigger different responses. However, it was preferred that the inclusion criteria were broad
(i.e., PD in general); furthermore, as few parents suffer postnatal death, creating a study solely
including such parents and comparing discourses would be difficult. An additional limitation
was that the sample in this study was mostly made up of parents of Spanish nationality;
including other cultural backgrounds would have extended the generalizability of the data.
Although both fathers and mothers were interviewed, as suggested by other studies [51,52],
the sample of fathers was smaller than that of mothers as some refused to discuss the issue or
could not because of work issues. Parents who declined participation could have provided
valuable information that in some cases could have been associated with a pathological
grieving process. The study reflects the parents’ perceptions of the impact of their child’s PD
on their social environment. This impact could have included other social actors such as
siblings, grandparents, etc. However, ethical issues (interviewing children) and accessibility
(grandparents, obtaining parental permits) forced us to contemplate these perspectives through
the parents’ perceptions. All participants were part of either a nuclear or an extended nuclear
family (with grandparents)—none of the participants were single parents or couples in non-
heterosexual relationships. Interviewing participants from single-parent families (or any other
type of non-normative families) could have provided complementary results.

Batasan utama penelitian ini adalah bahwa orang tua diwawancarai saat mereka berduka
karena PD, yang mencakup kematian janin dan pascakelahiran — dua situasi berbeda yang
cenderung memicu respons berbeda. Namun, lebih disukai kriteria inklusi yang luas (yaitu,
PD secara umum); Selain itu, karena hanya sedikit orang tua yang menderita kematian
pascakelahiran, membuat penelitian yang hanya melibatkan orang tua tersebut dan
membandingkan wacana akan sulit. Batasan tambahan adalah bahwa sampel dalam penelitian
ini sebagian besar terdiri dari orang tua berkebangsaan Spanyol; termasuk latar belakang
budaya lain akan memperluas generalisasi data. Meskipun ayah dan ibu diwawancarai, seperti
yang disarankan oleh penelitian lain [51,52], sampel ayah lebih kecil daripada ibu karena
beberapa menolak untuk membahas masalah atau tidak bisa karena masalah pekerjaan. Orang
tua yang menolak partisipasi dapat memberikan informasi berharga yang dalam beberapa
kasus dapat dikaitkan dengan proses berduka patologis. Studi tersebut mencerminkan persepsi
orang tua tentang dampak PD anak mereka terhadap lingkungan sosial mereka. Dampak ini
dapat mencakup aktor sosial lain seperti saudara kandung, kakek nenek, dll. Namun, masalah
etika (mewawancarai anak) dan aksesibilitas (kakek nenek, mendapatkan izin orang tua)
memaksa kita untuk merenungkan perspektif ini melalui persepsi orang tua. Semua peserta
adalah bagian dari keluarga inti atau keluarga inti (dengan kakek-nenek) —tidak ada peserta
yang merupakan orang tua tunggal atau pasangan dalam hubungan non-heteroseksual.
Mewawancarai peserta dari keluarga orang tua tunggal (atau jenis keluarga non-normatif
lainnya) dapat memberikan hasil yang saling melengkapi.

5. Conclusions

PD affects family dynamics, including a couple’s relationship, which can be strengthened by

coping with adversity together or weakened by increased arguments or decreased sexual
activity. Siblings and grandparents also suffer the consequences of PD in the family. Feelings
of abandonment or overprotection may arise in older siblings and expressions of grief or even
an opportunity to resolve past grief in grandparents.
5. Kesimpulan

PD memengaruhi dinamika keluarga, termasuk hubungan pasangan, yang dapat diperkuat

dengan mengatasi kesulitan bersama atau dilemahkan dengan meningkatnya pertengkaran atau
penurunan aktivitas seksual. Kakak dan kakek juga menderita akibat PD dalam keluarga.
Perasaan diabaikan atau terlalu dilindungi dapat timbul pada kakak-kakak dan ekspresi
kesedihan atau bahkan kesempatan untuk menyelesaikan kesedihan masa lalu pada kakek-
nenek.

Regarding their social environment, parents who suffer a loss due to PD experience work
problems, a lack of recognition of their grief, the absence of rituals, the trivialization of their
loss and the disavowal or delegitimization of their mourning.

Mengenai lingkungan sosialnya, orang tua yang menderita kerugian karena PD mengalami
masalah pekerjaan, kurangnya pengakuan atas kesedihan mereka, tidak adanya ritual,
meremehkan kehilangan mereka dan pengingkaran atau pelimpahan duka mereka.

In terms of the practical implications of this study, a family that suffers a PD may need
comprehensive care that goes beyond physical or psychological care. Knowing the impact of
PD on family dynamics, as well as the social, family and work environment can be useful for
social care providers, health care professionals (as nursing, midwifery or medicine) and
educators. Attention must be paid not only to mothers but also to fathers, older siblings and
the extended family. Policies that give the deceased fetus or baby the right to be registered and
to have an identity or name should be developed. Religious rites should be offered in
hospitals and communities for those parents who wish to celebrate them. At a community-care
level, nurses, social workers, occupational therapists or psychologists should offer targeted
interventions to foster a healthy grief process amongst families who have suffered a perinatal
loss. The recognition of the loss by the community would help the families to work through
their grief.

Dalam hal implikasi praktis dari penelitian ini, keluarga yang menderita PD mungkin
membutuhkan perawatan komprehensif yang melampaui perawatan fisik atau psikologis.
Mengetahui dampak PD pada dinamika keluarga, serta lingkungan sosial, keluarga dan kerja
dapat bermanfaat bagi penyedia layanan sosial, profesional perawatan kesehatan (sebagai
perawat, kebidanan atau kedokteran) dan pendidik. Perhatian harus diberikan tidak hanya
untuk ibu tetapi juga untuk ayah, kakak dan keluarga besar. Kebijakan yang memberikan hak
pada janin atau bayi yang meninggal untuk didaftarkan dan memiliki identitas atau nama
harus dikembangkan. Ritual keagamaan harus ditawarkan di rumah sakit dan komunitas bagi
orang tua yang ingin merayakannya. Di tingkat perawatan komunitas, perawat, pekerja sosial,
terapis okupasi atau psikolog harus menawarkan intervensi yang ditargetkan untuk mendorong
proses kesedihan yang sehat di antara keluarga yang menderita kehilangan perinatal.
Pengakuan atas kehilangan oleh masyarakat akan membantu keluarga mengatasi kesedihan
mereka.

Author Contributions: Conceptualization, M.C.-A., C.F.-S., and F.R.J.-L.; Data curation,

M.C.-A., Formal analysis, C.F.-S., J.M.H.-P., F.R.J.-L., E.H.-S., and M.B.C.-F.;
Methodology, C.F.-S., J.M.H.-P., I.M.F.-M., and
J.G.-M.; Supervision, C.F.-S., F.R.J.-L., and J.G.-M.; writing—original draft preparation,
M.C.-Á., J.G.-M., and
C.F.-S.; writing—review and editing, M.C.-A., J.M.H.-P., I.M.F.-M., F.R.J.-L., E.H.-S., and
M.B.C.-F. All authors have read and agreed to the published version of the manuscript.

Kontribusi Penulis: Konseptualisasi, M.C.-A., C.F.-S., dan F.R.J.-L .; Kurasi data, M.C.-A.,
Analisis formal, C.F.-S., J.M.H.-P., F.R.J.-L., E.H.-S., dan M.B.C.-F .; Metodologi, C.F.-S.,
J.M.H.-P., I.M.F.-M., dan
J.G.-M .; Supervisi, C.F.-S., F.R.J.-L., dan J.G.-M .; menulis — persiapan draf asli, M.C.-Á.,
J.G.-M., dan
C.F.-S .; menulis — meninjau dan mengedit, M.C.-A., J.M.H.-P., I.M.F.-M., F.R.J.-L., E.H.-
S., dan M.B.C.-F. Semua penulis telah membaca dan menyetujui versi naskah yang
diterbitkan.

Funding: This research received no external funding. The APC was funded by Grupo de
Investigación Ciencias de la Salud CTS-451, University of Almería (Spain).

Pendanaan: Penelitian ini tidak menerima dana eksternal. APC didanai oleh Grupo de
Investigación Ciencias de la Salud CTS-451, Universitas Almería (Spanyol).

Acknowledgments: The research team appreciate the participants for their contributions.
Ucapan Terima Kasih: Tim peneliti menghargai para peserta atas kontribusinya.

Conflicts of Interest: The authors declare no conflict of interest.

Konflik Kepentingan: Penulis menyatakan tidak ada konflik kepentingan.

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