Women’s Experiences with Palliative Care during Pregnancy

Abstract

Objective.

To explore the experiences of women who received life-limiting fetal diagnoses during pregnancy and support from a perinatal palliative care program.

Design.

Descriptive qualitative.

Setting.

The perinatal palliative care program is part of a not-for-profit system of 24 hospitals serving the intermountain west.

Participants.

A convenience sample of 12 women who experienced pregnancies with life-limiting fetal diagnoses and received care from a perinatal palliative care program.

Methods.

Women chose to participate from mailed invitations or responded to a post on private social media and then completed semi-structured interviews about their experiences surrounding the fetal diagnoses and support from a perinatal palliative care program. Interviews were approximately 40 minutes in length and were conducted over the phone, recorded, and then transcribed. We performed content analysis by coding, forming categories of similar coded data, and constructing themes by recontextualizing categories through iterative, team-based meetings.

Results.

We identified four themes from the data: Importance of Memorabilia to Cope with the Death and Documentation of Pregnancy, Acceptance of Death as Part of the Pregnancy Experience, Continued Life Without a Child, and Importance of Empathy Throughout the Process.

Conclusion.

The themes support the existing research findings about the needs of pregnant women as they cope with difficult situations. Our findings show the necessity and importance of perinatal palliative care programs.

Precis

Results expand understanding of what women need following life-limiting fetal diagnoses during pregnancy and demonstrate the necessity of perinatal palliative care programs.

With the advent of more advanced prenatal testing options, including maternal blood tests and ultrasound screenings, parents are now more knowledgeable about their growing fetuses than they were just a few decades ago. In approximately 2% of pregnancies, parents receive life-limiting diagnoses for the developing fetus (Coleman, 2015). This information transforms the pregnancy into a difficult emotional experience (Cote-Arsenault & Denney-Koelsch, 2011).

Women whose fetuses are diagnosed with life-limiting conditions must choose to terminate or continue their pregnancies. Regardless of the choice made, these women and their families must cope with losing their pregnancies or their newborns during the perinatal period or shortly after birth. Research about parents’ experiences during this emotionally distressing time is limited. In a literature review of the experiences of parents who underwent fetal screening and subsequently received life-limiting fetal diagnoses, Wool (2013) found only 20 articles published from 1995 to 2012. Of these, only nine were about the psychological perspectives of parents who received these diagnoses. Most of the articles focused on the physical aspects, structure, and processes of care within the clinical setting. Results of this review indicated that news of the fetal anomaly dramatically affected parents in the short term and altered their perceptions of normal pregnancy and anticipated future pregnancies (Wool, 2013).

CALLOUT 1

Parents who receive life-limiting diagnoses for their developing fetuses must cope with feelings that include sorrow for the loss of a healthy baby, a sense that time has stopped because preparation for the birth is no longer relevant, loneliness, and isolation in grief (Wool, 2013). Even when surrounded by caring others, parents reported a lack of understanding from others about what they were going through (Cote-Arsenault & Denney-Koelsch, 2011). Parents found the ability to cope by acknowledging the baby’s personhood and role in the family (Cote-Arsenault & Denney-Koelsch, 2011), treasuring memorabilia (Cote-Arsenault & Denney-Koelsch, 2016), accepting the diagnosis and outcome, and accepting a new reality in which the future they were expecting for the baby is now gone (Lalor et al., 2008, 2009). Furthermore, making the most of their time with their fetuses/newborns took the form of cherishing the pregnancy itself and the ultrasounds that were performed after the diagnoses (Cote-Arsenault & Denney-Koelsch, 2016; Denney-Koelsch et al., 2015).

In a more recent literature review, Blakeley, Smith, Johnstone, and Wittkowski (2019) explored parents’ decision-making following prenatal diagnoses that were life-limiting or had long-term implications for the fetus and family. These authors identified three primary themes focused on parents’ perceptions of their own lives and the life of the unborn fetus. These themes included All Life is Precious, Hope for a Positive Outcome, and A Life Worth Living (Blakeley et al., 2019). The process of making meaning for parents was also clear in the work by Cote-Arsenault and Denney-Koelsch (2016) who found that parents who received diagnoses of life-limiting, congenital fetal anomalies navigated through a series of developmental tasks that were different from other forms of grief.

Perinatal hospice and palliative care programs are intended to help parents with difficult pregnancies to navigate pregnancy, birth, and death and provide emotional and individualized support for women and their partners. Perinatal palliative care programs also offer tools for nurses and other clinicians with which to address the complex issues experienced with life-limiting fetal diagnoses. Some of these include coordination of care, advanced care birth planning, comfort-maximizing care for the fetus or newborn, provision of meaningful pregnancy experiences, and bereavement support (Denney-Koelsch, 2011). Parents have unique needs through the diagnostic process, pregnancy trajectory, and bereavement period that are not readily available with usual clinical care, and perinatal palliative care programs address these needs (Wool, 2013). Most importantly, these programs help parents experience meaning and affirmation of parenthood for their unborn infants (Cote-Arsenault & Denney-Koelsch, 2011).

However, the use of perinatal palliative care and its role in helping parents cope with loss has not been explored. Additional research is needed to further understand this difficult experience and how nurses and other providers can best support parents. The purpose of our study was to explore the experiences of women who received support from a perinatal palliative care program after life-limiting fetal diagnoses.

Methods

Design

We chose a qualitative descriptive approach as the best methodology to capture the experiences, thoughts, and emotions of women who received life-limiting fetal diagnoses during pregnancy and received support from a perinatal palliative care program. Paired with qualitative content analysis, qualitative description provides pragmatic yet meaningful answers to research questions by focusing on the facts presented and the participants’ own words without reliance on pre-existing frameworks and theories (McIntosh & Morse, 2015; Sandelowski, 2000). The semi-structured interview provides a structure for qualitative description, elicits participants’ perspectives regarding an experience, and allows flexibility for the participant and researcher. Participants can respond as they wish to questions (or decline to answer altogether, if they chose), and the researcher can sensitively probe using impromptu follow-up questions as needed (McIntosh & Morse, 2015). We obtained human subjects research approval from Intermountain Healthcare and the University of Utah’s institutional review boards.

Setting

We used a perinatal palliative care program to identify potential participants for our study. This program is for families who live in the intermountain western region of the United States and serves women who receive life-limiting diagnoses for their fetuses during pregnancy. The program offers emotional, social, and practical support by helping families create pregnancy and birth plans and providing referrals to community resources (Angel Watch Program, 2021). Other services include the provision of tangible items (such as blankets, clothing, and books through an e-lending library) and support groups for affected individuals. The program, which is staffed by trained professionals including nurses and grief specialists, is offered through one of the local health care providers. However, all provided services are available through self-referral or professional referral regardless of health care provider or insurance status. The program is free of charge, and referrals may be made from the time of diagnosis until 18 months after the birth.

Participants

We recruited participants through mailed letters of invitation or a private online social media webpage. To recruit by mail, a member of the research team who was associated with the perinatal palliative care program sent letters to 316 potential participants from a list of women who previously used the program in the past 10 years. The letter was approved by the institutional review board as a consent cover letter and described the study the women were being invited to join. If interested, women were asked to return an included postage-paid postcard that indicated their interest in participating. To recruit online, the manager of the perinatal palliative care program posted information about the study on a private online social media webpage associated with the program, including contact information for study investigators. Prospective participants could elect to contact the researchers for more information about study participation. Five women responded to the mailed invitation letter and the primary investigator reached out to schedule phone interviews. The private online social media webpage yielded seven more women who contacted the primary investigator to schedule phone interviews.

Women who were 18 years of age or older, had diagnoses of life-limiting fetal anomalies in the previous 10 years (i.e., diagnoses made in 2006–2016), spoke English as a primary language, and participated in the perinatal palliative care program were eligible for inclusion. We allowed for diagnosis within the previous 10 years because of our perceived sense that women would find it difficult to discuss their experiences too close to the loss of the fetus/newborn. We recognized that individuals who experience a significant loss have variable rates of recovery, and we allowed time for participants to emotionally process the experience emotionally so they could take part in an interview (Dempsey et al., 2016). The accuracy and completeness of memories over time are variable. However, factors that facilitate recall of the events surrounding perinatal loss include the rarity of the event; its vividness, importance, and emotional intensity; association with physical sensations; association with accurate recall of events; and influence on personal identity (White, 2002; May, Dein, & Ford, 2019).

Procedures

The first author (AC) initiated a telephone call from a private office to the prospective participant. After important highlights about the study were discussed as outlined in the consent letter, informed consent was obtained verbally. Interviews lasted from 20 to 60 minutes. Each of the 12 participants were interviewed by the first author (AC) who had a background in genetic counseling. The research team adhered to tenets of research reproducibility for qualitative data in sensitive research studies (Clark et al., 2017). Specifically, interview audio recordings were stored on a secure university-owned server. The recordings were uploaded to a secure website of a professional transcription service and transcribed within a week. The recordings were then deleted from the transcription vendor’s server but retained on the university server. After the transcripts were returned to the study team, the first author (AC) checked the transcripts for accuracy by reading the transcripts and listening to the recordings. All original recordings were then deleted within 2 weeks after the accuracy check was complete.

Interview Guide

A series of pre-identified questions guided the semi-structured telephone interviews. The interview guide was created through a review of the literature and input from the study team. To improve clarity before the interviews, the first author (AC) piloted the guide over the telephone with the last author (ER) and a genetic counseling student not otherwise associated with the research project. Interview questions were open-ended and focused on the experiences of those participants who received support from a perinatal palliative care program after receiving news of a fetal life-limiting diagnosis. Each participant was invited to tell her story at the beginning of the interview to promote a conversation rather than a strict question-and-answer interview-style (Rubin & Rubin, 2011). The goal was to make the participant feel as comfortable as possible. Prompts such as “If you are comfortable, would you expand on that?” and “Is there anything else you would like to add?” were included when more detail or direction was needed (see Table 1 for questions in the interview guide).

Table 1.

Semistructured Interview Guide Example Questions

To identify mothers’ experience of palliative care after receiving a prenatal diagnosis for a life-limiting condition or uncertain outcome for the pregnancy: Can you tell me how you were first offered information regarding the program? Was the contact with the program called something else by the provider who referred you? When, or at what point, was the contact with the program offered? (During pregnancy or after birth) How do you feel about the timing of receiving the information about the program? Was there anything in your pregnancy experience that you needed support for that was not offered? If so, what would that be?

To explore the role of the providers involved in the referrals to perinatal palliative care, as perceived by women at the time they are given a positive prenatal diagnosis for a life-limiting condition or uncertain outcome. If you are comfortable, could you tell me more about the decision points within your pregnancy? What choices were you presented with? How do you feel about the providers in terms of encouraging you to make a decision about the pregnancy that were consistent with your values? What else can providers do to help you better during this process? Would you change how the individual offered the support program? Why or why not?

To identify strengths and limitations of the perinatal palliative care program from the viewpoints of mothers. What do you think are the strengths and limitations to this perinatal palliative care program? If you speak a second language, do you feel you were accommodated? More broadly, do you feel you were accommodated culturally? Tell me about how you were feeling during this time in terms of your sense of hope? Do you feel taking part in the program has helped you in this aspect?

Analysis

Before analysis of the interview transcripts, team members received training on qualitative data analysis from two authors (ER, LC), who have extensive knowledge in qualitative research methods. We then conducted a qualitative content analysis on the transcripts. First, we read through the initial two transcripts carefully to identify codes (sections of text expressing a similar concept) that were generated from participant responses and the topics of the interview guide (Rothwell et al., 2012). Next, we applied the coding template to transcripts and added new codes as required. Throughout the data analysis process, we held regular team meetings to review the coding and ensure accuracy of the coding template. An Excel spreadsheet, in which we entered quotes from each participant that best fit the specific code, aided in this process. We grouped the codes into larger, descriptive categories based on similarity of the data. We then returned to the transcripts and recontextualized the data for development of themes (Miles et al., 2014). Reviewing and recontextualizing the data was the most significant aspect of the qualitative descriptive analysis (Morgan, 2010).

Results

Participant demographic information, including years since contact with the perinatal palliative care program and the death of the fetus or newborn, are presented in Table 2. Participants experienced broad range of fetal diagnoses and pregnancy outcomes; two children were still living at the time of the interview. Trisomy 18 was the most common fetal diagnosis (n = 3). Analysis of the 12 interviews resulted in four categories that encapsulate four concepts important in the participants’ overall pregnancy experiences: Importance of Memorabilia to Cope with the Death and Documentation of Pregnancy, Acceptance of Death as Part of the Pregnancy Experience, Continued Life Without a Child and Importance of Empathy Throughout the Process.

Table 2.

Participant Information (N = 12)

Participant	Year of contact with perinatal palliative care program	Fetal diagnosis	Pregnancy outcome
1	2010	Trisomy 18	Live birth; still living
2	2014	Trisomy 18	Early induction; child not living
3	Unknown	Multiple anomalies	Termination (D&E)
4	2012	Hypoplastic left heart syndrome	Live birth; Lived 9 days
5	2013	Hydrops fetalis	Stillborn
6	2012	Trisomy 18	Stillborn
7	2015	Renal agenesis	Live birth; Lived 1 hour
8	2012	Turner syndrome	Stillborn
9	Unknown	Body stalk abnormality	Stillborn
10	2014	Skeletal dysplasia and short jaw	Live birth; still living
11	2016	Lobar holoprosencephaly	Live birth; Lived 5 ½ hours
12	2013	Cloacal malformation	Live birth; Lived 20 minutes

Importance of Memorabilia to Cope with Death and Documentation of Pregnancy

The need for memorabilia was a common theme, and most participants discussed the importance of having something tangible to hold on to after their fetus or newborn died. Two participants discussed this in the future tense because it was unknown how long their babies would live. Memorabilia also provided evidence of the pregnancy and validated the physical symptoms of pregnancy:

And even providing material things that you could have after the baby had passed away. That, I think, is an enormous, huge, huge thing because, especially for me, it was my first, and my body had showed all the symptoms of being a mother. I’d been pregnant for nine months, and then I had all the destruction from post-birth. It was very evident on my body, but I had no child in my arms. And to have something, to physically have something, to physically have a stuffed animal or photographs saying that my child lived, my child was here, that was a huge deal for me, and I was really thankful for those things that they provided.

(Participant 4)

Most of the participants spoke about the importance of medical tests that demonstrated physical signs of a progressing pregnancy. When asked to share some of the more prominent points within the pregnancy, most described ultrasound appointments and other medical procedures:

I guess that key points were just ultrasounds, always getting to know that he was alive and had a strong heartbeat. They recorded the ultrasounds for us so I have the video on a DVD of him actually alive. That was a big key point.

(Participant 7)

Participants noted that the perinatal pallative care program helped them gather memorabilia throughout their pregnancies. One participant explained an experience right after birth:

She came and took molds of my baby’s hands and feet and did imprints, and then she took pictures…So I love that. That was very important to me, and she cut off a little piece of her hair, and that was helpful too just to have like an actual piece of her still.

(Participant 11)

Acceptance of Death as Part of the Pregnancy Experience

Another category that emerged touched on the importance of talking about the upcoming death of the baby and how many individuals do not accept or engage in those types of conversations. One participant explained,

And it made me really aware that our culture does not talk about death. Our culture does not like to talk about death, or we don’t know how to handle it. We’ve lost track of— cultures all around the world have really specific rituals and ways in which they mourn, grieve, honor the deceased and departing loved ones. And we just don’t.

(Participant 3)

Another participant discussed this theme in the context of her husband’s career as a therapist working, at times, with couples who have experienced a perinatal loss as well. In comparison to the couples her husband sees professionally, she noted that the perinatal pallative care program’s advantage was its ability to support discussion between parents about the upcoming death of the baby and not waiting to engage in dialogue until after death occurred. One participant explained that her acceptance of death came about as part of getting to know another mother through the perinatal pallative care program. She saw that “[this other mother] had pictures of her baby on her front room walls. It was so awesome because I was getting worried that I was, I don’t know, mourning too much about it, being like I want pictures of her in every room.” By seeing how another mother incorporated her dead child’s photographs into their family photo wall, this mother said she felt permission to do the same. “The fact that I saw her [photos on the wall] was [a message that] she still loved her babies, and she still cared about her babies.” With that example, she decided, “I can do that with mine too. I don’t have to act embarrassed that this thing happened and push it under the rug like it didn’t happen. It happened.” (Participant 11)

On an even more existential scale, participants reflected on death, life, and the possibility of heaven as they attended to their own evolving beliefs. Even in the midst of her pain, one participant said, “My biggest hope was that she would change me, would change our family, and be a beacon of hope instead of something that was so painful.” Over time, this participant expressed a new, intangible desire to maintain hope: “Hope is now hope for something better. Hope for a life after death. Hope that heaven is closer than we think. And I feel that and I know that.” (Participant 6) From talking about their child’s death as parents to reflecting on faith-based beliefs about life and death, participants confronted the necessity of grappling with death in ways that were both intensely personal and absent from the cultural map of pregnancy and parenting.

CALLOUT 2

Continued Life Without a Child

Another category focused on how this unique situation of a fetus with a life-limiting fetal diagnosis changed the participants’ perceptions of pregnancy. Preparing for another life to enter into the family is in itself a substantial change, and to then have to face the death of the child not yet born creates a challenging emotional dichotomy. The participants described an extreme contrast between what they were expecting and looking forward to in the future, to their new reality after the diagnosis. For example:

Because all of sudden it’s like, “Ooh, the perfectness is gone. How do you work through that?” To think [through] your own reality, what you thought it was going to be, to what it is. And so even if you haven’t lost anything yet, you’ve lost that dream.

(Participant 10)

And I felt like I was in this huge mess, and I had no idea— I mean, you’re pregnant and planning for a delivery that’s out of sync. But then you’re planning for a funeral … It’s all of these questions of things that you never thought that you’d have to deal with.

(Participant 2)

Another participant described the developmentally jarring experience of anticipating parenthood, only to be confronted with death as a young woman, “I mean, I was 24 years old. I had no idea what a funeral was supposed to be or where to find burial plots. Those aren’t things that you think about when you’re having a baby.” (Participant 6)

Some of the participants stated they were able to come to terms with the diagnosis and situation early on, framing the rest of their pregnancy experience in a different light.

And I just felt like that was my answer that I had been searching for, that my son was not meant to live. And actually, instead of bringing a sense of hopelessness to me, it brought a sense of, “Okay. This is what’s supposed to happen, and now I can line up my behaviors accordingly,” because that’s what I wanted.

(Participant 4)

Importance of Empathy Throughout the Process

Participants were asked to talk about what was important during the pregnancy. Out of the 12 participants, 7 discussed the comfort and empathy they received from the counselors with the perinatal palliative care program and from the associated peer support group throughout their pregnancies. Representative quotes included these two reflections:

When she [counselor] came, I felt like when she was there, I was safe. I felt so alone, except for when she was there. I feel like she knew what to do and what was happening and what was going on.

(Participant 2)

But they [counselors] were there when he was born, which meant that we did have somebody else who understood. One of my big worries was I really did not want a cute, little, happy student nurse popping in and congratulating me. Just go away and leave me alone because you just don’t get it.

(Participant 1)

Another participant discussed the importance of talking to someone who had gone through a similar experience: “She had personal experience losing her child. And so that makes me trust and relate to her automatically more.” (Participant 9) These quotes not only emphasize the idea that support is an important need for these participants, including individual support from peers, but they also reveal that nurses across the perinatal care spectrum and allied professionals can fill this niche and offer an important perspective for this unique situation in pregnancy and birth.

Discussion

The four themes we identified highlight women’s experiences with receiving life-limiting fetal diagnoses at a time in their own developmental trajectory when death is unexpected and antithetical to their expectations for birth. With the life of their expected child truncated, participants in our study appreciated opportunities to talk with their partners. They learned from empathetic women, both peers and health care professionals, who understood and modeled how to incorporate the loss experience into daily life. By collecting memorabilia, participants resisted the erasure of their child, and cherished reminders and milestones reminiscent of their child’s brief life. Our findings suggest that a perinatal palliative care program can help address these important needs during a profoundly difficult time.

Our findings are consistent with those of other studies exploring parental experiences with perinatal loss. Cote-Arsenault and Denney-Koelsch (2016) indicated the importance of memorabilia and openness about the child that has died for a parent who is processing this kind of loss, both of which were similar categories in our study. Additionally, the systematic review on the decision-making process completed by Blakely et al. (2019) revealed that the major influences on a parent’s decision after a terminal fetal diagnosis and these themes are reflected in our findings, in particular the need for memorabilia, the importance of medical tests to affirm pregnancy and connection to the growing fetus, and the need to accept a new reality.

The affirmation of pregnancy and memorabilia of the child for our participants were important for hope and coping strategies that promoted not only healing but reframing of their experiences as mothers. Interestingly, other researchers identified similar emotional responses. For example, women expressed that hope was still possible after the diagnosis and that the time during pregnancy allowed for bonding with their babies (Lathrop & Vandevusse, 2011). This perception of themselves as a mother and the bond with their baby remained. Memorabilia and clinical milestones in their pregnancies validated these maternal identities.

Our findings also revealed some previously unexplored themes. In particular, it was clear that being open about the death of a baby was challenging for the participants, due to a prevailing cultural view in the United States that death should not be discussed openly. There is a gap in the literature when it comes to cultural aspects of care for women and their partners experiencing perinatal loss due to fetal diagnoses incompatible with life (Wool, 2013). Perhaps a greater understanding of how societal views on death affect women and their partners dealing with these diagnoses and losses could result in improved clinical care. For instance, another unique finding of our study was the participants’ discussion of the effects of empathy provided by perinatal palliative care program volunteers and associated clinicians. Our participants found the connection to the perinatal palliative care program to be one of the most important aspects of this trying time in their lives. Visitors from the program provided an empathetic response, as well as a different cultural approach to dealing with the death of a child. Perinatal palliative care programs fill a unique niche for women and their partners by providing support for the family and a sense of direction during a time when they most need it.

Implications

Additional research about women’s and men’s experiences of life-limiting fetal diagnoses can improve the responsiveness and sensitivity of health care providers and the development of perinatal palliative care programs. Authors of a Cochrane review of intervention effectiveness in supporting mothers, fathers, and families after perinatal death concluded that well-designed descriptive studies of sensitive, compassionate interventions offered by experienced staff may yield positive outcomes (Koopmans, Wilson, Cacciatore, Flendady, 2013). No known methodologically rigorous studies comparing different approaches have been conducted. Nurses and midwives are well-suited to study this phenomenon with sensitivity and methodological creativity. Parental preferences about the timing and content of perinatal palliative care programs, the needs of both men and women in separate and couples-based grief programs, and culturally tailored support programs merit exploration. Outcome measures of such programs and interventions could include social adjustment, physical symptoms, care satisfaction, effects on subsequent pregnancy, and emotional symptoms of bereavement (Callister, 2006). The experience of nurses who care for women during a perinatal loss also warrants further consideration in research and clinical settings. The physical, psychological, and spiritual needs of parents throughout the perinatal loss experience directly affect nurses. Creative interventions to prepare nurses to offer highly skilled, sensitive care may include new approaches to simulation in education and debriefing in clinical settings to preserve nurses’ resilience over time (Willis, 2019).

To help nurses support families, advanced care plans that emphasize and validate the pregnancy, motherhood, and the child should be addressed (English & Hessler, 2013). Nurses and midwives support women in the moment, at crucial times in the experience of pregnancy and perinatal loss, and across clinical care settings. Nurses listen, provide mementos, acknowledge women’s emotions, validate the loss, and support women in creating meaning through sharing their story of loss. These interventions, described by women in this study and refined over three decades of nursing research, support parental empowerment, comfort, and connectedness (Callister, 2006 Jonas-Simpson, McMahon, Watson, & Andrews, 2010; Williams, Munson, Zupancic, & Kirpalani 2008).

CALLOUT 3

Limitations

Our study had notable limitations. First, we only interviewed women and not their partners or other family members, and we had a small sample size with no demographic data, such as race/ethnicity, age, marital status, religious preferences, gravidity, etc. This was a major omission in our data collection. Furthermore, our participants were all in a specific database and a private social media group supported by the local perinatal palliative care program. The response rate to these mailed invitations was very low. However, most of the recruitment was based on responses from a private social media site for this program, and it is unknown if the mailed invitations were returned or not received. As such, the participants who responded may have used this program more than other women, and participation in this study may not represent those who did not use these programs, may have used other support programs, used no formal perinatal palliative care program at all, were not satisfied with the support received, or were not yet prepared to discuss their experiences. How the local perinatal palliative care program is run and what it offers may be different from other perinatal palliative care programs, and this may influence the women’s experience with perinatal loss. Standardized perinatal palliative care practices based on evidence is needed because many program components and outcomes are variable (“Perinatal Hospice and Palliative Care Programs and Support,” 2018). Additionally, the elapsed time since contact with the perinatal palliative care program and their child’s death was not taken into account during data analysis. Lastly, it should be acknowledged that there is participant bias due to recruitment methods, requiring participants to actively respond to a mailer or reach out to the research team based on information seen in an online post.

Conclusion

We used semi-structured telephone interviews to gain understanding of the experiences women had during pregnancy with a fetal diagnosis of a life-limiting condition and their experiences with a perinatal palliative care program. Descriptive themes support the existing research findings on women’s experiences with perinatal loss and expand our understanding of what women need during this difficult time. Affirming women’s identity as mothers, offering genuine empathy, and helping them find hope for the future seemed to be central to adjusting and coping with the loss of a child. Furthermore, our findings demonstrate the necessity and importance of perinatal palliative care programs, filling a unique niche for these women and providing validation and affirmation for the family when they most need it.

Callouts.

1. There is limited research about the role of perinatal palliative care programs among women who receive life-limiting fetal diagnoses.

2. Participants valued the memorabilia, support, and empathy provided by the perinatal palliative care program, which helped them cope with death as part of the pregnancy experience.

3. Nurses can assist women to find perinatal palliative care programs to help them cope with diagnoses of life-limiting fetal anomalies.