Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis

Abstract

Aim

The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal education.

Design

A qualitative study.

Methods

We employed the phenomenological approach and the Colaizzi strategy to analyse semi‐structured interviews. Thirteen persons were interviewed. The participants were couples (n = 6) and women (n = 7) who received LLFC and were preparing for birth.

Results

We described three main paths of prenatal education chosen by parents with LLFC: 'Searching for normality' concerned people participating in conventional prenatal classes (AC) who tried to avoid confronting the situation they faced; ‘Searching for communitas’ concerned the participation in special AC selected for the opportunity of sharing experiences; ‘Searching for an individual way’ concerned people who resorted to individual preparation for childbirth, often as a result of delayed planning. Parents should have a choice of various paths of birth preparation, that best meet their preferences.

1. INTRODUCTION

The Polish Gynecological Association defines the task of prenatal classes as facilitating the psychological and physical wellbeing of the pregnant woman, the woman giving birth and the family (Recommendations of the Polish Gynecological Society on Antenatal Care in Normal Pregnancy, 2005). The aim of prenatal education is the practical preparation for childbirth and parenthood, creating a community with other parents, acquiring knowledge necessary to cope during childbirth and in childcare and breastfeeding (Barimani et al., 2018; Chikalipo et al., 2018; Entsieh & Hallström, 2016; Heim et al., 2019; Maimburg et al., 2010). At the same time, the systematic reviews do not provide an unequivocal basis for drawing credible conclusions regarding the positive effect that participation in childbirth preparation classes has on perinatal outcomes (Gagnon & Sandall, 2007; O'Kelly & Moore, 2017).

2. BACKGROUND

Most literature describing prenatal education focuses on healthy, low medical risk women. There is a lack of information on prenatal education for parents presenting a high medical and social risk.

Couples who have received an LLFC (Life Limiting Fetal Conditions—a confirmed state or illness of the fetus or infant that could lead to death prior to or after birth) diagnosis and decided to continue with the pregnancy require special attention, also in the realm of prenatal education and preparation for birth. Studies show that women facing a LLFC diagnosis seek professional guidance and nonjudgmental medical care (Denney‐Koelsch et al., 2016). They want to obtain information about what to expect during childbirth (Denney‐Koelsch et al., 2016; Lalor et al., 2009). Few studies analyse in detail how parents facing a LLFC diagnosis prepare for birth and the likely death of their child (English & Hessler, 2013; Wool, 2013). Studies of the CenteringPregnancy and MamaCare models of group prenatal care contained elements of evaluation of prenatal education and preparation, yet only in the form of a description of the general satisfaction of participants and of maternal outcomes in relation to lactation. These studies did not look at parental experiences with prenatal education and did not measure other indicators of the quality of perinatal palliative care (Froh et al., 2020; Schwarz et al., 2020).

The aim of this study was to describe the unique experiences of parents facing a LLFC diagnosis, who chose to continue with their pregnancy and who participated in individual and group prenatal education.

3. METHODS

3.1. Setting

Until 1993, Poland had a relatively liberal law regarding access to abortion services. After the enactment of the Family Planning Act (1993), abortion was made illegal except in three cases: rape, threat to the woman's life and health, and ‘irreversible abnormality of the fetus’ (Król & Pustułka, 2018). In October 2020, the Constitutional Court ruled that the termination of a pregnancy due to an irreversible foetal abnormality (including cases of lethal foetal diagnosis) unconstitutional, and made it illegal (Ruling of the Constitutional Court of 22 October, 2020, No. K 1/20, 2020). Since 2021, Poland has had one of the most restrictive abortion laws in Europe.

In Poland, the number of parents who take advantage of group antenatal education increases every year (Sikora & Kmieć, 2016). More than 400 antenatal classes are registered in the country (Bagnowska & Klimkiewicz, 2020; Krysa et al., 2016). All women in Poland are eligible for reimbursed antenatal education through individual meetings with a midwife (‘Ordinance of the Minister of Health of 16 August 2018 on the Organizational Standard of Perinatal Care’, 2018).

To our knowledge, there were no organized group prenatal classes for parents facing a LLFC diagnosis in Poland before 2019. Those parents could take advantage of individual sessions as part of the Polish perinatal palliative care scheme. They could receive care and specialized support in hospices within hospitals as well as external hospices (Dangel & Szymkiewicz‐Dangel, 2016; Jalowska et al., 2019; Ordinance of the Minister of Health of 29 October 2013 on Guaranteed Services in the Field of Palliative and Hospice Care Dz.U.2018 Pos.742, 2013). Despite the theoretical availability of different forms of support, in practice access was very patchy.

In 2019, thanks to Prof. J. Szymkiewicz‐Dangel, the Warsaw Hospice for Children Foundation in cooperation with Saint Sophia Specialist Hospital offered the first childbirth preparation classes for parents facing an LLFC diagnosis or other life‐limiting conditions. Approximately 10% of the hospice's expecting parents used this form of childbirth preparation, as estimated by the hospice personnel. These classes were conducted via group meetings with an interdisciplinary team: anesthesiologist, palliative care specialist, neonatologist, midwife, psychologist, physical therapist, and family counsellor.

In 2020, due to the pandemic, the childbirth preparation courses in the hospice were continued twice weekly online on ZOOM. Each cycle comprised five, three‐hour meetings with groups of 10–20 participants. Topics related to pregnancy and childbirth were discussed, including technical information (nutrition during pregnancy, packing the hospital bag for birth, breathing exercises, relaxation, vertical positions for labor, the first contact with the newborn, creating keepsakes and memories of a stillborn child) and recommended exercises after birth. Emotional aspects dealing with the stages of pregnancy and birth, with the main topic being the mourning process, were also discussed during the classes.

3.2. Recruitment and study participants

Participants were recruited through the Reference Center for Fetal Cardiology and the Perinatology Clinic of the Saint Sophia Specialist Hospital in Warsaw. Announcements about the study were placed in both medical centers. Participation criteria included a lethal foetal diagnosis and the decision to give birth. Volunteers (n = 26) contacted the researcher to declare their willingness to participate, give the expected date of birth and express consent for contact in the post‐birth period to conduct an interview. Then, 3 and 12 months after the expected date of birth, the researcher contacted the women or the couple who had initially expressed interest, to conduct the interview. All the men taking part in the study were the biological fathers of the children. Two women were excluded because they did not meet the criteria (the defects were not lethal). During the initial phone conversation with the researcher, one woman asked to be interviewed before the birth, as she was worried that she would be too distressed afterwards (she was attending conventional prenatal classes). Five of the women withdrew from the study. Six couples (men and women) and seven women ultimately agreed to be interviewed after birth. The characteristics of the participants are shown in Table 1.

TABLE 1.

Characteristics of the participants.

Participant‐mother (number of pregnancies/number of births)	Age (years)	Participant‐father at the interview	Preparation for birth: (conventional antenatal classes [CAC], Antenatal classes dedicated to parents after LLF [LLFCAC])	Foetal diagnosis	Pregnancy outcome
P1 (1, 1)	45	P2	CAC	Trisomy 18	Death during labour
P3 (1, 1)	34	P4	CAC	Trisomy 18	Death during labour
P5 (1, 1)	40	P6	CAC	Galen vein malformations	Death during labour
P7 (1, 1)	25	P8	CAC	Deletion of the 2nd arm of chromosome 14	VD 36 weeks; child is alive/home
P9 (1, 1) a	35	Did not participate	LLFCAC	Patau syndrome; Edwards' syndrome	Child was alive 3 months after birth/hospice
P10 (2, 2)	35	Did not participate	LLFCAC	Trisomy 18	Death during labour
P11 (2, 1)	46	Did not participate	LLFCAC	Renal agenesis	Death during labour
P12 (2, 2)	32	Did not participate	LLFCAC	Ebstein syndrome	Death during labour
P13 (1, 1)	28	P14	LLFCAC	Trisomy 18	Death shortly after birth
P15 (3, 3)	38	Did not participate	LLFCAC	Trisomy 18	Death during labour
P16 (1, 1)	35	Did not participate	LLFCAC	Trisomy 18	Death during labour
P17 (3, 3)	39	P18	Individual (with midwife)	Renal agenesis	Death shortly after birth
P19 (5, 1)	45	Did not participate	Individual (with midwife)	Trisomy 18	Death before labour

^a Participant came to antenatal classes without the child's father.

Four couples (women and men) participated in conventional prenatal classes dedicated to families not facing a life‐limiting diagnosis, seven women and one man in prenatal classes dedicated to women facing a LLFC diagnosis, two women and one man had undergone individual childbirth preparation (see Table 1).

3.3. Conducting interviews and data analysis

Semi‐structured interviews were conducted between September 2021 and February 2022 on Zoom at a time most convenient for the participants. Couples were interviewed together. The interviews were conducted by the first (UTP) and the second (BB) authors (both midwives, PhD, with experience in qualitative studies), using a previously tested guidebook. Some women who attended the LLFC prenatal classes knew the researchers before as they were among the instructors conducting the classes. The interviews focused the mothers/father's experiences related to group and individual preparation for birth. When more details were needed, participants were prompted with 'Can you tell me more about that?' or 'How did this look in your case?' Each interview lasted between 45 and 90 min. The interviews were written down.

3.4. Ethics

Permission from the Bioethical Committee REDACTED was obtained. Participants received precise information on the aims and process of the study. Informed consent was sought before the interviews commenced.

3.5. Data analyis

In the analysis we employed the Colaizzi (1978) phenomenological approach. This method allows for the exploration of the subjects' needs and expectations. The written down interviews were anonymized, read many times and subjected using the colour and file indexing method. Two of the authors (UTP, BS) independently coded the data with the MAXQDA software, after all authors had accepted the coding tree for significant statements. Specific themes were identified through the analysis of the different codes and the major categories obtained. In addition, we included relevant quotes to illustrate the results. The various categories were grouped into a final coding tree chart that illustrates the experiences of parents who chose to continue with their pregnancy in the face of a LLFC diagnosis, as they prepare for childbirth (Figure 1). Having analysed and identified the three leading themes, the researcher invited participants to discuss the results in order to make sure they reflected their experiences. The data saturation was established by two independent researchers. For validation purposes, the interviewees evaluated the result of the analysis to see if it concorded with their initial experience.

FIGURE 1.

The final coding tree: categories and themes.

Credibility and rigour were enhanced through a thoughtful and purposeful planning of the study, a conscientious and continuous exchange of ideas between the researchers and through honest communication between the researcher and interviewees regarding the study and its results as mentioned above. This paper was written according to the Standards for Reporting Qualitative Research (O'Brien et al., 2014).

4. RESULTS

Three main themes were singled out during the course of data analysis: the need for and expectation of ‘normality’, the need for and expectation of communitas, and the need for and expectation of an individual path. As the interviewees' needs guiding their choices during preparation for childbirth seemed important to us and differed greatly, in presenting the results of the study we adopted an arrangement following the three different educational paths of prenatal education chosen by the parents: 1. Searching for ‘normality’—with regard to those parents who chose conventional prenatal classes; 2. Searching for communitas—with regard to those who decided to attend the prenatal classes for parents facing an LLFC diagnosis; and 3. Searching for an individual way—with regard to parents who chose the individual sessions (Figure 2).

FIGURE 2.

Three different paths of prenatal education chosen by the parents.

4.1. Path 1: Searching for normality

Four women and their partners in our group participated in conventional prenatal classes dedicated to expecting parents of healthy children. As they explained, they wanted to be perceived as any other parents awaiting childbirth. By joining the regular classes they sought ‘normality’ and wanted to ‘escape’ the reality of being parents facing an LLFC diagnosis. The women reported that during their pregnancy the healthcare provider denied them access to some the medical examinations, regular ultrasound examinations, and this made them feel ‘excluded’ from the group of ‘normal’ pregnant women. For them, participation in conventional prenatal classes was an attribute of inclusion among ‘normal’ pregnant women, and an element of protection against marginalization.

During this pregnancy, I felt left totally on the sidelines, as if I represented some inferior category, because I was not entitled to many things which women with ‘normal’ pregnancies were entitled to, from maternity clothes to basic medical examinations. I just felt marginalized…. (P3)

In this sense, ‘regular’ prenatal classes offered them a chance to become ‘normal’ parents. For example, one of the fathers described how he and his wife tried to follow the ‘standard’ course of care that he found in the regular pregnancy information leaflet:

In the pregnancy file you see a little square and a timetable, and at some point the phrase ‘Childbirth preparation classes', so we tried to follow the standard course. Going to prenatal classes seemed like an entry to parenthood. (P8)

Moreover, one of the men tried to protect his partner from difficult news related to the LLFC diagnosis, and took upon himself the responsibility to receive all information while trying to make the pregnancy experience as normal as possible for his wife:

My attitude was to build a sort of glass dome over my partner and learn about the condition myself. Through the whole period I created a kind of protective shield for her. From my perspective it seems that we tried to make the time that we were given seem normal. (P2)

One couple joined the conventional prenatal classes because they found the one dedicated to parents facing an LLFC diagnosis put an additional burden on them:

After the diagnosis my wife and I really needed to feel normal, instead of parents of a very sick child. In the hospice center we felt even more abnormal, therefore we started classes in the conventional prenatal classes. (P6)

One couple started conventional prenatal classes, but feeling out of place, they switched to an LLFC prenatal class:

We were attending conventional prenatal classes and had to interrupt them, simply because we didn't see the point and I was psychologically unable to participate. In this normal prenatal class, parents of ill children feel like outcasts. (P13)

Parents in this group mostly stressed practical knowledge such as breathing techniques and labouring positions, as the main gains from regular prenatal classes. Only one couple from this group revealed to instructors and other participants in the classes that they had received an LLFC diagnosis.

After the course, they discussed their individual needs with a midwife and in this way they were able to develop a birth plan tailored to their needs.

They showed us various birth plans and I found out that it doesn't have to be specific and clear‐cut, that I can write it to fit my needs. We have a plan, devised by going through a questionnaire that is available in the prenatal classes with the midwife. This was very valuable for us as, on the one hand, we were able to foresee things that appear during childbirth and prepare for them, but also we were able to think about the advantages and disadvantages [of certain medical procedures] ahead of time, so that at the given moment we would feel more prepared. (P7)

4.2. Path 2: Searching for common experiences

One couple and six women chose dedicated prenatal classes. As they explained it, they were searching for a community of other parents with similar experiences. They felt that due to the LLFC diagnosis they were being marginalized as parents, not only by their family members, but also by healthcare personnel. The standard model of care did not cater to their needs.

Women in particular prioritized the sense of community with other parents in a similar situation. They stressed that it was one of the very few spaces where they did not have to hide their diagnosis and could experience prenatal motherhood. In the prenatal classes dedicated to parents facing an LLFC diagnosis, participants interacted with specialists who shared specific information that catered to their needs. As explained by one of the participants:

A woman expecting the arrival of a healthy child has a completely different experience—rather than searching for a cemetery she is planning the colors for the baby's room… when you are waiting to see if the child survives, how long it will live and breathe, you need real support from skilled people. (P9)

Participants stressed that these classes made them feel less lonely and that they appreciated that their need for a community has been noticed and recognized:

I was happy that this prenatal class had been organized for the parents, [a class] where we all face an abnormal situation. So it was comforting that I am not alone with this after all… In hindsight, it was wonderful to participate in these classes, I needed to feel a sense of community, to not feel alone dealing with all that we had to face. (P10)

In general, I felt very nice there, a bit like with family. This doesn't happen in normal, conventional prenatal classes. What I remember to this day is that someone cooked soup for us. In general, I felt than as if someone had simply hugged me. (P 13)

Moreover, some participants stressed that the group nature of the classes allowed for better learning outcomes, as people shared experiences and asked questions:

Because our group was unique, everyone was suffering since they knew it wouldn't be the way it should. Others asked questions that allowed a paradigm to form. We were careful when asking questions, knowing each parent is going through specific challenges. With classes run by various specialists, this exposed us to different points of view. Many of them were practitioners who worked in the hospital and were up to date on the latest research; they touched upon the psychological aspects as well. (P11)

While most of the participants were very satisfied with the dedicated classes, one couple revealed they had trouble connecting with other parents. While their diagnostic process had been complex and as, at the time of the classes they were still not sure of the prognosis, they described feeling alienated from the rest of the group:

It was challenging that the group was divided. There were parents of children with heart defects that were potentially treatable, then those who had untreatable, mostly genetic defects which, honestly, carried a death sentence. And we didn't know to which group we belonged, we were torn. Even among such suffering people, we were ‘without’ and ‘in between’—this was not easy, as we thus felt even more different than upon entering the prenatal classes, which was very alienating. (P13)

For all the participants who chose this path, knowledge and practical advice on their specific information was most valuable.

I found the technical questions most valuable, to imagine what the birth might look like, what I might experience, how the baby will lign up the birth canal. This was important, since my emotions were so changeable, I couldn't really make sense of them. (P16)

All the participants searching for a community of experience prepared a birth plan that took into account the needs and expectations connected with their first contact with the child—like welcoming and saying goodbye. Writing down needs and expectations in letter form was extremely important for them. This started in the classes, after which parents discussed specific elements of birth care.

The most valuable outcome of the prenatal classes was the example letter that we received and discussed at home. We wrote a letter to the hospital, and it was reviewed by the midwives and neonatologists. This was to ensure that there would be no surprises on the day of birth, thus a sort of sacred document’ (P14). ‘We devised a birth plan—this showed my husband my expectations, what I needed in this unique situation, and he could take care of it…, with previous births when I arrived in the maternity ward I barely remembered my name, so he was in charge of all the rest. The plan was invaluable in this case. (P12)

4.3. Path 3: Searching of an individual way

Three of the participants (one couple and one woman) did not attend any group prenatal classes and decided on individual preparation with a midwife. All of them did so late in the pregnancy as, for various reasons they had been postponing the preparations for labour and birth. At this stage, they had very little chance of joining any prenatal education group. One of the women explained that she had been busy with looking for specialists for her terminally ill child and ‘forgot’ about the impending childbirth (P17). Another woman kept postponing the delivery preparations, thus avoiding a painful situation:

I did not seek information earlier on the birth—as a form of protection; it didn't seem applicable to me. I realized that I'd have to give birth, but that it wasn't anything I could get excited about since it was all for nothing. It was my defense mechanism to keep myself from suffering even more. (P19)

For both women, searching for information and practical knowledge about the labour and birth process were the main reasons why they decided to join prenatal classes. As one of the participants stated, by preparing for birth she was trying to ensure she had done everything she could for herself and her baby:

It is better to prepare, to know one has done everything, because you want the best for your child as a mother, yet can do so little. This way you can avoid blaming yourself for anything that might happen medically to yourself or the child, to avoid guilt and months of rehashing all the possible scenarios, and to acknowledge, as painful as this may be, that you know did the best for your child. (P19)

Both respondents appreciated the opportunity for one‐on‐one prenatal education sessions with a midwife. Individual meetings with the midwife gave them a sense of security about discussing painful issues related to the birth of a lethally ill baby.

These face‐to‐face meetings with the midwife were bery helpful, because I could ask about problems and matters which concerned me directly. I had the opportunity to speak freely, without having to fear the reactions of other parents. In individual meetings one can explore one's problems more in depth. It is easier to open up in a face‐to‐face situation and say things that can't be said in a larger group. (P17)

I regret that I decided to prepare myself for the birth so late, but I was fortunate in that I met with a midwife alone, face‐to‐face. She was there only for me and I could ask her any questions and dispel any doubts. I can't imagine myself speaking about our difficult situation in front of other people. (P19)

5. DISCUSSION

We have described experiences of parents facing an LLFC diagnosis who participated in three different forms of prenatal education and demonstrated how those different forms catered to parents' different needs and expectations.

For parents who chose regular prenatal classes, the search for ‘normality’ came to the fore. They conducted prenatal education with a group of peers expecting healthy children in order to experience full‐fledged, ‘normal’ parenthood. Most of them did not reveal the lethal diagnosis, as this could have led to insufficient support from group members and teachers. Nonetheless, the need for ‘normality’ and belonging to the community of ‘normal’ parents led them to remain in the group. Our earlier studies confirm this: women facing an LLFC diagnosis sought ‘normality’ in their pregnancy and their bodily experience and wanted to be recognized as any other ‘normal’ pregnant woman (Tataj‐Puzyna et al., 2022).

Most women participating in our study felt marginalized and excluded from other pregnant women. Thus, the need for community correlated with this sense of exclusion. It also explains the difficulties in setting up motherhood rituals typical for normal pregnancies (baby shower, purchase of a carriage, arranging the nursery) and identifying with being a mother. Earlier studies have shown that women facing an LLFC diagnosis need and benefit from pregnancy‐related rites of passage (Côté‐Arsenault & Denney‐Koelsch, 2011). Those participants who decided to attend prenatal classes dedicated for parents facing an LLFC diagnosis also expressed the need for a community and for ‘belonging’. Unlike parents in the first group, however, they sought a community of parents in a similar situation. Participation in a special prenatal class allowed them to experience prenatal parenthood in a community of people in a similar situation. Yet even some parents attending LLFC classes had trouble fitting in with the group, because of the differences their respective diagnoses and the prognoses entailed.

For the participants of these first two paths, identification with a group of parents awaiting childbirth made them feel visible to society as parents. This validated their parenthood and provided a rite of passage from ‘not being a parent’ to ‘being a parent’. Earlier works on the liminal status of pregnant women echo this conclusion (Côté‐Arsenault, 2020; Côté‐Arsenault et al., 2009).

As suggested by other studies, relations of similarity (modality of relation) develop best in spontaneously liminal situations, particularly between people of equal status (Côté‐Arsenault et al., 2009; Turner & Abrahams, 1969). Almost all participants following the second path integrated well with their group. The sense of community among pregnant women with similar prenatal diagnoses provided a shared experience, comfort, and increased awareness of needs. These results confirm earlier reports that emphasize the supportive effect of group care, where parents build a community and normalize their experiences (Froh et al., 2020). There are indications that developing ‘social capital’, that is, the benefit derived from belonging to a social group, has a marked impact on health and wellbeing (Gagnon & Sandall, 2007).

Participants who chose the individual preparation path with a midwife, showed less need for a parental community. Instead, they focused on practical knowledge and used prenatal classes as part of a strategy to ensure the best care and outcome for themselves and their babies.

Devising a birth plan was a crucial element of prenatal education. Earlier studies have shown that writing such a document constitutes an important therapeutic tool, giving parents a sense of control, the ability to enjoy the pregnancy, celebrate birth and experience the mourning process (Cortezzo et al., 2019, 2020; Horning & Braun, 2006). Birth planning can help meet parents' needs and avoid regrets (Côté‐Arsenault, 2020; Côté‐Arsenault & Denney‐Koelsch, 2016). Studies have also shown that such planning also provides the space to articulate previously hidden needs (Côté‐Arsenault & Denney‐Koelsch, 2011).

During the writing of the birth plan, the medical personnel can share their knowledge and help parents make difficult decisions on pregnancy, birth and early newborn care (Denney‐Koelsch et al., 2016; Sandelowski & Barroso, 2005). However, existing studies show that most doctors do not have enough time to properly devise such a plan with parents facing an LLFC diagnosis (Cortezzo et al., 2019).

Our study also demonstrated that the birth plan can be an important part of building community with other parents who share the same prenatal diagnosis and connecting with specialists. Participants in the second path had the opportunity to observe their needs and expectations in this community which, along with the expertise of specialists, helped them come up with a personalized birth plan. This group of parents was therefore able to develop trust‐based relationships with other parents and specialists, articulating goals and the steps to their realization. Studies confirm this: the birth preparation is limited to filling out a document, but is a process unfolding in time (Lamberg Jones & Leuthner, 2020).

According to our study, most of the women and their partners who postponed birth preparation or did not reveal their diagnosis and joined the majority of parents awaiting healthy children, failed to devise a birth plan. By hiding the lethal diagnosis from the teachers and other parents, they forfeited their chance for a safe space to confront the difficult reality. Other studies have also shown that the planning process can be very stressful, as it forces parents to face the situation. Planning birth can help parents process their pain, allowing the experience of anticipatory mourning (Cortezzo et al., 2020; Pinkeney, 2020).

Six men who took part in our study were actively involved in matters of their pregnant partners. They sought to protect them from factors that could disturb their peace during the difficult prenatal maternity, during the wait for the birth of the lethally‐ill child. They initiated participation in prenatal educational classes in order to provide emotional comfort and a sense of security for their partners. Our results corroborate those of the Cole et al. (2019) study, in which partners assumed the role of primary caregiver for their partner during the anticipated loss of their child after the LLFC diagnosis. In our study, men integrated themselves with their partners during pregnancy. They wanted to provide both themselves and their partner with a sense of ‘normality’, despite the devastating emotions associated with the anticipated death of their child. The integrated experience of grief by those expecting the birth of a lethally ill child can bring partners closer together. This is borne out by studies in which the concept of grieving together can increase relationship cohesion in a union. (Koopmans et al., 2013).

Studies have shown that in cases of intense stress people adopt various coping strategies: avoidance, confrontation or a cognitive approach (Ryś & Trzęsowska‐Greszta, 2018). All the participants in our study sought ‘comfort’ for themselves, yet they each had different priorities. Some sought information to better cope with the pregnancy; others postponed or avoided factual knowledge, thus creating a protective bubble. This corroborates the results of earlier studies, where women carrying babies diagnosed with fetal abnormalities displayed different coping mechanisms, by seeking or avoiding information (Lalor et al., 2009).

6. CONCLUSIONS

There is no single best method of prenatal education for LLFC families. Providing group classes meets the need for community, yet this has to be done carefully: finding people in a similar situation can be challenging given the small number of families facing an LLFC diagnosis and the variety of ways in which LLFC is experienced. There are also parents who, in their quest for ‘normality’, seek the community of expecting parents that show no medical complications.

The birth plan allows participants to articulate expectations and needs and the parents to prepare for labor. Women facing an LLFC diagnosis should have a choice of different birth preparation paths adjusted to their preferences and needs, with flexibility to change at every stage. Understanding the factors involved in a parent's experience of LLFC can help maternity and palliative care providers to better support couples as they prepare for childbirth.

6.1. Limitations

The method by which the study group was selected represents a certain limitation. Only parents eager to share their experiences took part in the study, therefore we cannot speculate on the prenatal education of those who did not consent to be interviewed. Moreover, the availability of conventional prenatal classes varied depending on the provider, with only members of the LLFC prenatal classes having access to the same programme and teachers.

FUNDING INFORMATION

The study is supported by the Department of Midwifery at Centre of Postgraduate Medical Education Research Program for year 2022.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest.

ETHICS STATEMENT

Permission from the Bioethical Committee of the Centre of Postgraduate Medical Education Nr 75/2021 was obtained.

Tataj‐Puzyna, U. , Baranowska, B. , Szlendak, B. , Szabat, M. , & Węgrzynowska, M. (2023). Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis. Nursing Open, 10, 6817–6826. 10.1002/nop2.1928

DATA AVAILABILITY STATEMENT

Data available on request from the authors.