Exploring Unmet Needs and Family Planning Among Preeclampsia Survivors: A Qualitative Study

doi:10.21203/rs.3.rs-8022149/v1

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Research Article

Exploring Unmet Needs and Family Planning Among Preeclampsia Survivors: A Qualitative Study

https://doi.org/10.21203/rs.3.rs-8022149/v1

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Background

Preeclampsia (PE) is a hypertensive disorder of pregnancy associated with significant morbidity and mortality in both the mother and baby. Moreover, PE survivors are at markedly increased risk of recurrence. Thus, PE survivors and their families face difficult family planning decisions, often with few resources to aid them in making their decision.

Purpose

We aimed to identify the unmet needs of women with a history of PE, with a focus on decision-making surrounding family planning.

Methods

We conducted four virtual focus groups with 25 women between February 21, 2024 and March 20, 2024. We recruited potential participants from the “End Preeclampsia” website and newsletter in January 2024. To be eligible, potential participants need to be at least 18 years old at the time of participation, have a history of PE, and report ever considering another pregnancy. Using rapid qualitative analysis methods, we analyzed the contexts and perspectives that contributed to women’s lived experiences, particularly surrounding their family planning decision-making.

Results

Four key themes emerged among women we interviewed. Participants reported 1) A lack of knowledge and awareness of PE prior to their diagnosis in past pregnancies; 2). Limited access to quality healthcare, consequently causing a delay in diagnosis and treatment; 3) A lack of emotional, informational, and provider support through their PE journey; and 4) having anxiety about future pregnancies due to the risk of PE recurrence. Altogether these themes heavily impacted participants' decisions on future family planning, resulting in delayed subsequent pregnancy or foregoing pregnancy altogether.

Conclusions

Survivors of PE have substantial unmet needs, including a need for more prenatal education from clinicians, increased emotional support from family, friends and support groups, and a lack of available PE information and counseling to assist them in future family planning decisions.

Worldwide, approximately 10% of pregnant people are diagnosed with a hypertensive disorder during their pregnancy and 3–5% will develop preeclampsia (PE)(Fox et al., 2019). PE is associated with high morbidity and mortality in the mother and neonate and can result in long-term maternal and fetal complications, including an increased risk of cardiovascular disease,(Wang et al., 2023; Wu et al., 2017) metabolic disorders,(Jenabi et al., 2021; Pinheiro et al., 2016) and neurological conditions(Friis et al., 2025; Zhen Lim et al., 2023) in both the mother and offspring.

PE is defined according to clinical systems and is diagnosed after 20 weeks gestation with the onset of new or exacerbated hypertension (≥ 140 systolic or ≥ 90 diastolic mmHg) accompanied by evidence of multi-system organ dysfunction (“Gestational Hypertension and Preeclampsia: ACOG Practice Bulletin, Number 222.,” 2020). Pregnant people who experience PE are at increased risk in a subsequent pregnancy (Nie et al., 2024). Thus, PE survivors are less likely to pursue a subsequent pregnancy compared to those with a non-preeclamptic pregnancy (Seeho et al., 2016). Furthermore, 7% of PE survivors described pregnancy as traumatic compared to 1% of pregnant people with normotensive pregnancies (Roberts et al., 2022).

Though research is limited, preeclampsia survivors report that provider counseling and collaborative decision-making are critical for patient recovery and future pregnancy planning (Shree et al., 2021). Further, survivors report that postpartum education on the consequences of preeclampsia is needed (Hansson et al., 2022). While PE can be severe and consequential, many who develop PE report not having been told of their condition intrapartum. Among women diagnosed with PE, only 32% could correctly identify their diagnosis whereas no women with eclampsia could do so (Joshi et al., 2020).

Purpose

In this study, we aim to explore the ongoing needs of preeclampsia (PE) survivors postpartum. Specifically, we aimed to explore (1) awareness of PE prior to diagnosis, (2) quality of medical care received, (3) perceptions of their experience with PE, (4) availability of a strong support network, (5) fear and stress surrounding pregnancy, (6) desire and plans for more children, and (7) impact of PE on current physical and mental health. We hope to inform providers on how best to manage PE survivors postpartum.

Study Design

We conducted a phenomenological study using rapid qualitative analysis (RQA) to identify unmet needs in PE survivors, especially surrounding family planning decisions. Potential participants were recruited from EndPreeclampsia.org, an online patient support and advocacy organization, via website or newsletter in January 2024. To be eligible, potential participants needed to be 18 or older at participation, have a history of PE, and report ever considering another pregnancy. Four virtual semi-structured interviews with 25 women were conducted between February 21, 2024 and March 20, 2024.

We chose to conduct a qualitative study as it permits in-depth engagement with the community of interest, and facilitates the construction of a multi-faceted understanding of PE survivor’s lived experiences. We reviewed Standards for Reporting Qualitative Research, a validated 21-item checklist for reporting qualitative research, to document important aspects of our research team, methods, results, and analysis process (Appendix 1: SRQR checklist).

Our research team consisted of undergraduates (JG, JP, DB, VT), graduate students (LC, JO, AS), medical students (EK, AK), and faculty (RC, MLW) with backgrounds in public health, medicine, reproductive epidemiology, biostatistics, women’s health, qualitative research, and rapid qualitative analysis.

Participant Selection

This study was conducted among women who receive the EndPreeclampsia.org monthly newsletter and who self-reported a history of preeclampsia. We selected this as our source population due to the diversity of its members and the wide reach of the organization. Visitors to this website are 98% female and most are between the ages of 25–44. There are currently 55,500 registered members representing more than 90 countries. Digital posters were created and promoted via the EndPreeclampsia.org newsletter. The posters included information about the study and included a scannable link to the screening form. The first respondents who screened as eligible were contacted by study staff to undergo the informed consent process and schedule for 1 of 4 focus group sessions. Respondents were contacted in chronological order until 25 participants underwent the informed consent process, which was conducted via zoom sessions with study staff (LC).

Data Collection: Semi-structured focus groups

We chose to conduct focus groups instead of one-on-one interviews for this study to document the interaction between participants who shared experiences of PE and family discussions around PE (Finch et al., 2014). Using this method of data collection that has been used in other PE qualitative studies (Crombag et al., 2017), we were able to examine women’s individual and diverse perspectives on barriers and facilitators to PE care as well as how they responded to one another’s lived experiences.

We created a semi-structured focus group guide that drew upon the literature on preeclampsia and family planning (Appendix 2: Focus group guide). The focus group guide was developed using the National Institute of Minority Health and Health Disparities (NIMHD) framework to organize questions by four levels of influence (individual, interpersonal, community, and societal) and domains of influence related to our research question (e.g., individual–access, advocacy; interpersonal–support system, educators; community–provider preferences, PE visibility in the community; societal–social norms, discrimination and stigma around PE)(National Institute on Minority Health and Health Disparities, 2024) .We applied this framework to the current study as a way to structure the focus group guide and understand the multilayered relationships between patient, clinician, family, neighborhood, and health system in managing preeclampsia (Davidson et al., 2018). Once we developed a draft of the focus group guide, we piloted and refined the questions with MW, an expert in PE, and her research team. Institutional approval for this study was granted by the Health Science Campus Institutional Review Board at the University of Southern California (UP-23-00579). All participants underwent the informed consent process via HIPAA-protected Zoom and provided their consent.

We conducted four virtual 60-minute focus groups with 4–6 participants per group between February 21, 2024 to March 20, 2024 via HIPAA-compliant Zoom meetings. Prior to the focus group, participants completed a REDCap survey to obtain demographic data. Upon entry into the meeting room, each participant selected or was assigned a color at the start of the session to preserve confidentiality. Each focus group was conducted by 2 team members, with MLW leading the discussion and LC taking analytical notes to inform the analysis. We followed up on questions with probes–additional open-ended questions about topics introduced by the participants (e.g., “Do you ever feel like some resources aren’t for you? Probe: race/ethnicity, language, socioeconomic status”). This approach sought to address the researchers’ initial concerns for PE awareness and care while further exploring participant perspectives through reciprocal interaction. Discussions centered on influences affecting preeclampsia awareness, access to quality care, support needed and/or received, and concerns regarding future pregnancies.

We recorded video and audio of the focus groups and used the caption feature to conduct a first-pass transcription of the focus group. Once the focus group was completed, we downloaded the Zoom-generated transcription (MLW) and (LC) reviewed the file for accuracy, de-identified names or details that could potentially identify participants, and made edits for clarity, requiring approximately 1 hour to clean each transcription in preparation for analysis. Once the transcription was complete, both video and audio recordings were deleted to further protect participant privacy and confidentiality, leaving only the de-identified data for analysis.

Data Analysis

We used rapid qualitative analysis (RQA), an implementation science-oriented approach, to aggregate findings and inform clinical practice for postpartum care of PE survivors (Hamilton & Finley, 2019). We chose to use RQA to efficiently extract themes and quotes from each focus group into a template using streamlined methods, enabling fast, informed decisions. By using RQA, we could quickly identify patient insights and contextual factors that can guide timely interventions and improve postpartum outcomes for those with PE.

The transcript coding team worked collaboratively to cross-check all transcriptions; each transcript was reviewed by at least two members of the team. Subsequently, we developed a matrix to identify and organize emerging insights that aligned with questions in the guide, as well as reflections on unanticipated responses from participants that went beyond the original scope of the guide (Matrix: Appendix 3). Midpoint data analysis (i.e., theoretical saturation) was used to refine the interview guide for subsequent focus groups. Development of the matrix was also collaborative, with each team member adding to the matrix and cross-checking the contributions of other team members. This technique ensured there was a high level of reliability and accuracy in transcript coding and completion of the matrix.

The study involved 25 participants with a self-reported history of preeclampsia. Participants were 29 (IQR: 25, 42) years of age, on average, and were predominantly African American (68%). Hispanic ethnicity was reported by 33.3% of participants.

Table 1: Characteristics of the Study Population

Variable	N	Median (IQR) or Count (%)
Age (in years)	25	29 (25, 42)
Race White African-American Other	25	7 (28.0) 17 (68.0) 1 (4.0)
Ethnicity Hispanic or Latino/a Not Hispanic or Latino/a	24	8 (33.3) 16 (66.7)

Synthesis and Interpretation

In our focus group discussions with women with a history of PE, we heard repeatedly that the development of their PE was rapid and unexpected. Women in our study, many who referred themselves as “survivors of preeclampsia," described the sudden onset of symptoms in this way:

“I was sitting in my classroom, and I stood up, and all of a sudden I had this headache. I lost my vision. [I didn't receive my] diagnosis until 34 week[s] where [my doctor said] ‘you need to go home and go to the hospital [to deliver the baby].’ “ –Pink

Like Pink, many pregnant women who develop PE are not aware of their condition until symptoms become sufficiently severe as to require immediate medical attention. In our study examining women’s decision-making surrounding family planning, we found that many women knew little about preeclampsia and its symptoms before they were diagnosed, and indicated a desire for more prenatal and postpartum education. They expressed having felt unheard and dismissed during their deliveries and expressed a need for self-advocacy. Nearly all women in our study stressed the importance of needing additional support from their partners, families, and peers in managing the short- and long-term consequences of PE. Additionally, many participants feared or opposed a subsequent pregnancy after their experiences. Participants also reported challenges resulting from their diagnosis, reporting a need for more mental and emotional healthcare and a lack of trust in the healthcare system following their experiences with PE.

Result 1: Lacking information about PE during pregnancy, leading to unnecessary stress.

While PE can be severe and consequential, many survivors of PE in our study who developed PE reported not having been told by their providers of their condition intrapartum. PE survivors in our study reported receiving little to no information about PE or PE prevention strategies during pregnancy and some women reported that this lack of information persisted post-diagnosis. They expressed a desire for clinicians to provide more information on the symptoms and signs of preeclampsia, sharing that they felt it would have been helpful in limiting the severity of their condition and provide an opportunity to prevent the worst consequences of preeclampsia. Participants shared that having greater access to information about PE, whether through education materials, prenatal classes, or community resources, would create more awareness and help them better navigate, prepare, and manage their symptoms before receiving a PE diagnosis. For example, Blue felt that having information about PE prior to the start of her pregnancy would have alerted her to the symptoms she was experiencing.

“[If] I would have had the knowledge about the symptoms of Preeclampsia, I would be prepared, I would know the signs and symptoms I am experiencing for this disease, and I would be able to consult the doctor in time.” –Blue

Similarly, Yellow expressed frustration that, had she felt sufficiently educated on risk management prior to pregnancy (e.g., lowering her blood pressure), she could have reduced the risks of complications due to PE.

“If I was aware of such a condition, which happens to women and is attributed to high blood pressure… I could have done something about that. [If] the information [was] available before one gets pregnant.” –Yellow

Some survivors described that, even after they received their PE diagnosis, they continued to lack understanding of the significance of the diagnosis for their and their baby’s health. For example, both Yellow and Turquoise shared that a lack of information and guidance about how to manage their symptoms and when to seek care left them feeling overwhelmed and worried:

“[I was diagnosed with PE] during one of my [routine prenatal] visits to the clinic. That's when I was examined, and the doctor told me that I was experiencing eclampsia. I had signs, but I did not know what it was, since it was my first pregnancy. I had no one around to tell me what it was…” –Yellow

“I would have really benefited from more help and more information [from clinicians]. When I was in the hospital… Nobody knew if the baby was gonna be okay, or how long they would be [in the NICU], or how long I would be [in the hospital]. I'm trying to Google all this Preeclampsia [information] on my phone and I'm just so overwhelmed by everything.” –Turquoise

Survivors expressed wanting PE screenings and formalized educational programs as part of their standard prenatal care. Red-2 for example noted that her local academic institution had been debating the necessity of adopting tests that may be able to predict PE or PE severity, and the importance of integrating these tests as a way to mentally prepare for potential PE during pregnancy:

“Knowing that…[PE] tests exist to see - early on in your pregnancy - what the level of risk you might or might not have might make you feel better…” –Red-2

Orange felt that educational classes addressing PE risk would be helpful to newly pregnant people to create prevention awareness of PE:

“Having foundational classes that could be helpful and thoughtful for just the pregnant women…It should be a foundational program that will help newly pregnant women to prevent them from having preeclampsia.” –Orange

Overall, survivors expressed a need for greater education about PE and its health risks to themselves and to their babies. They felt that having more information would have helped them to avoid the worst outcomes.

Result 2: Experiencing medical dismissal and struggling to be heard by clinicians.

Once participants received a PE diagnosis, many felt they had to advocate for themselves to receive a treatment plan. Several women expressed feeling unheard and dismissed when reporting PE symptoms and health concerns to their clinicians, contributing to some participants’ hesitation to trust their clinicians in future pregnancies.

For example, Red-1 was diagnosed with PE early in pregnancy and felt dismissed by her clinician, who did not provide any treatment or guidance on how best to manage her symptoms:

“...I was told that I didn't need to take any medications because I was newly pregnant, but I still insisted that I needed treatment because I wasn't feeling okay…[this] really affected me psychologically because I wasn't given a treatment, wasn't given a medication….I knew how I was feeling deep inside of me, but no one would pay attention to me,…I wasn't properly treated the way I wanted to [be].” –Red-1

Despite repeatedly telling their clinician that they weren’t “feeling okay,” during their pregnancy, Red-1 felt that she did not receive any guidance (e.g., controlling blood pressure with medication, ensuring fetal well-being, a plan for inducing labor) to manage her diagnosis.

Other participants also reported feeling unheard by their clinician when expressing that they were not “feeling ok” during their pregnancy. Green-1 described going to the emergency room (ER) for symptoms of PE (e.g., excessive swelling, persistent headache) and shared with the medical staff that something did not feel right:

“I was rushed to the ER [for preeclampsia symptoms]. I kept on saying [to the clinician], I wasn't really feeling well. I know myself - it's my body. I know what I'm feeling…I understand [that clinicians have]…been in this specialization for more than 20 or 30 years, but there are special rare cases where symptoms differ in each body…” –Green-1

While acknowledging her clinician’s medical expertise, Green-1 felt that pregnant patients are experts on what is normal for them and are accurate in reporting unusual signs or symptoms that they are feeling during pregnancy. Green-1 emphasized that not all cases of PE present in the same way and thus, felt her concerns should not have been dismissed or met with skepticism by her clincian. Similarly, Pink described needing to “fight for” a PE diagnosis at delivery, despite showing typical symptoms:

“[T]he day that I was taken to labor and delivery was not the day I received my diagnosis. I had to fight for it, to be honest… I eventually left my first group of doctors after [giving] birth…because I feel like they were dismissive of the headaches, the high blood pressure…so really I had to advocate for myself to get the diagnosis…” –Pink

Because of the perceived poor care she received during her first delivery, Pink made the decision to change medical groups after feeling dismissed by her clinician. Red-2 also reported feeling dismissed by medical staff, believing that she was being blamed for her her symptoms, resulting in long-lasting trauma postnatally:

“A different doctor [told] me I was creating my blood pressure problems from being nervous. And then the other doctor [told] me that my baby and I were going to die [because of PE] and that was the last thing in my head that she was trying to tell me [before delivery]. –Red-2

Green-2 emphasized the importance of having empathetic and communicative medical providers during diagnosis and delivery, expressing a feeling of frustration and confusion:

“I wish that [medical staff] could treat it with more empathy...when giving the diagnosis... or even just [sic] explain what's to come. “ –Green-2

Red-2 feared that her concerns would be dismissed by providers, causing distress for herself and her family and potentially leading to a life-threatening situation:

"I'm not necessarily scared of getting it again. I'm afraid of people not listening to me...I got severe postpartum anxiety/depression…there was this immense fear that there was something wrong with my body and I could die at any time… I didn’t trust doctors anymore.” –Red-2

Participants' experiences with PE reveal a pattern of medical dismissal and the need for self advocacy amongst the stories shared. Many expressed their symptoms were minimized and fears were disregarded by clinicians, despite voicing their concerns.

Result 3: Experiencing trauma and mental health concerns perinatally and following a preeclamptic delivery.

Several participants described experiencing psychological trauma as a result of their PE diagnosis. They emphasized the critical role mental health support played in coping with a preeclampsia diagnosis and its aftermath. While some women reported receiving sufficient support from family and friends, others expressed a need for formal therapy and online and in-person support groups.For some, this entailed access to online and, in particular, in-person support groups, where they could discuss their experiences with others who had first-hand knowledge of managing PE and advocating for themselves during pregnancy in the face of limited support from clinicians and family and friends.

For example, Red-2 reported that after being diagnosed with HELLP Syndrome, she did not get the support she needed:

“I think my blood pressure was 200 over 110 at the time. …I had HELLP syndrome… And now I'm pregnant again…I didn't have [support] the first time around I had [PE]. I have it now. So that was a big reason that I opted to try again, because I knew that this time my husband would be listening to me…with my care.” –Red-2

Despite her past HELLP diagnosis, Red-2 felt that having strong emotional support encouraged her to become pregnant again. Pink endorsed that having a support from family and friends was essential to her recovery from PE:

“I felt support[ed] and encouraged [by my family and friends]. They actually offered help in any way they could. And they were actually worried about my situation [with PE] – sometimes asking questions, giving me advice and as well as opinion[s] [be]cause there was actually a time I felt helpless, powerless [because of the PE diagnosis]. I felt so down I actually didn't know what to do, and my friends actually came in for me. and my partner was very supportive throughout this period.” –Pink

Having experienced a sense of powerlessness, Pink realized the critical role that family and community support played in her recovery.

Yellow also experienced emotional trauma as a result of her PE diagnosis, highlighting that the support she received from her family as well as the professional therapy she sought postpartum allowed her to navigate her emotions more effectively:

“After [the birth] I went for therapy sessions. For some sessions, I was with my husband, and we talked through the experience [of giving birth with PE] because it was traumatic on my end…there was a lot of support….even the body needs recovery. I really need[ed] the support.” –Yellow

Pink noted the importance of online PE support groups, which she found helpful in processing her experiences:

“The best resource that I had found on my first diagnosis was…through a preeclampsia help center Facebook group. Actually, it's like an evidence-based group. And they were my lifeline…I was traumatized after my first birth….I did end up going to therapy in person. But you know I was matched with a therapist who had no knowledge of [PE]. So it didn't do much…if I had gotten to know women who have gone through the same experience as me.... I feel like it will have relieved me a bit" –Pink

Pink described needing to find her own resources and support for PE beyond her clinical team and health system, in this case, an online Facebook support group specifically for women with PE. While Pink sought out medical attention to address the trauma from her first birth with PE with a therapist, she felt better supported by the Facebook group because of their shared PE and mental health experiences. She felt that the support she received outside of her clinical team and family network had a positive impact on her mental health and led her to having greater understanding of her PE diagnosis.

Orange shared that the support group she joined offered a safe space and a sense of community for women like her who had survived PE:

“I got support from a local support group… these groups help provide a space for women that have been struggling with preeclampsia and also survivors of preeclampsia. They also help these women meet [others] to share in their experience… that really helped me… I know more about others’ experience.” –Orange

Participants often indicated that they were traumatized by their experience with PE and were concerned about subsequent health complications. Green-2 stated that her experience with PE profoundly impacted her mental health even after pregnancy:

“I was diagnosed with PTSD from this entire ordeal...It doesn't go away.” –Green-2

Red-2 echoed these concerns and described persistent changes in her emotional health following her PE diagnosis:

“But the biggest thing was like, I just wasn't functioning like I used to. It kind of turned into a different person….I know that we are more at risk for heart disease and other things like that, and that's still kind of lesser than my mental health" –Red-2

She further noted that, while she is aware of and concerned about long-term physical risks, her postpartum mental health needs were more immediate.

The majority of participants voiced a desire for increased postpartum support to assist them in processing their PE diagnosis and managing their health beyond birth and postpartum. Women reported that they received support from family and friends, as well as therapists and online or in-person support groups. Survivors noted that, while online support groups were helpful, there was also a need for safe spaces for women to meet other women who had PE in the form of in-person support groups.

Result 4: Surviving preeclampsia evokes fear and impacts family planning.

Participants expressed fear and anxiety about future pregnancies and voiced concerns that their experience with PE could negatively affect their health or that of their child’s health. Green-2 explained that her experience with PE led her to not want to have additional children, fearing the impact on her partner and existing children:

"Preeclampsia weighs, and [like] my family planning of just [like] I can't go through it again. I can't put my children through it again: like the fear in your partner's face looking at you..." –Green-2

Some survivors noted that their experience with PE led them to delay their next pregnancy or limit the size of their family. Blue’s fear of continued adverse health outcomes from PE in postpartum prompted her to reevaluate her timing for a future pregnancy and her planned family size:

“I wanted the [age] difference with the second born to be at least 2 years…But now I think I’m going to extend it to around 5 years… I need to consider my health before anything else, and I also have decided to change my plans about family size.” –Blue

Blue expressed that her experience with PE and fear of a subsequent pregnancy led her and her partner to have many discussions about family planning goals. For Blue, this resulted in settling for having fewer pregnancies than intended due to concerns about her and her baby’s survival.

“First, I wanted 3 kids. But now, after talking to my partner, who came to the conclusion that because of the health condition…it can cause more harm than good to me. So we settled for 2.” –Blue

Red-2 shared that her experience with PE not only left her feeling stressed, confused, and traumatized but also led to hesitance to have another child. Because of her perceived need to advocate for herself to obtain a diagnosis as well as to receive adequate care postpartum, she felt discouraged from having another pregnancy, leading to a long delay having more children:

I was diagnosing myself [with PE] [during the delivery]…The postpartum care that I had was really traumatizing, and that was the main reason I waited so long to have another baby…It took me 16 years to want another pregnancy because of how mismanaged my care was” –Red-2

For some survivors, their experience of PE led them to abandon their plans for future children entirely. For example, Orange explained why her experience of PE impacted her desire for a larger family:

“I don’t think of having another child because of the challenge I went through. I was devastated, and that affected me. It affected my work, my social life, and I was just down at that period… I don’t have thoughts or [have] the mindset of having a second child… I don’t really think I wanna get pregnant anymore because that really affected me." –Orange

Likewise, Green indicated that her experience with PE led her to reevaluate family planning with her partner due to fear of further health complications.

“I talked to my fiancé… Because [of] my pregnancy I was in a coma for 6 weeks... Who knows whether next time I might not survive it? It would be something devastating for him and the children… I don’t want to have kids anymore.” –Green-1

Participants’ experiences in surviving PE influenced their decision-making in future family planning. For some participants, this was driven by the fear of another pregnancy and subsequent maternal or infant health complications. In other cases, experiencing PE led certain participants to delay planned pregnancies or decide not to pursue another pregnancy.

Survivors of PE expressed numerous unmet needs during and after their affected delivery. One such need is the desire for more prenatal and postpartum information on PE and its impact on physical and emotional health. Such primary levels of prevention, including education and testing, can empower patients to participate in their own care. Additionally, patient education can also help with health management after diagnosis, aiming to improve maternal and infant outcomes (Frawley et al., 2020). Furthermore, many participants in our study felt a lack of validation of their experiences with PE led them to mistrust their clinicians, causing lasting psychological trauma impacting their future family planning decision making. These stories emphasize the urgent need for clinicians to listen more carefully to patients, recognize the individuality of PE experiences, and provide empathy and timely care.

Need for PE prevention awareness and education. One study in Utah examined women’s knowledge of PE and noted that only 57% indicated that they had been informed of PE signs and symptoms by their clinician during prenatal care (Wilkinson & Cole, 2018). These findings are supported by studies in Ghana (Fondjo et al., 2019; Joshi et al., 2020), where only 32% of participants with PE could correctly identify their diagnosis and none of the women who developed eclampsia could do so. Further, 31% of this population reported receiving no prenatal education regarding PE. Similarly, a study conducted in Syria found that only 52.1% of pregnant women had ever heard of PE (Bohsas et al., 2024). Taken together, these findings point to an alarming lack of prenatal education about PE among pregnant women. In our study, we found that many women reported a lack of information about PE during pregnancy. Moreover, several participants indicated that they were not informed of their diagnosis until after delivery.

Need for clinicians to believe women’s concerns and potential PE symptoms and use this opportunity to provide PE prevention awareness and education. Participants also emphasized the importance of feeling heard by their healthcare providers. Many participants reported feeling that their concerns were dismissed and that they had to “fight” to obtain their diagnosis and associated treatments (e.g., antihypertensives), leading to mistrust of their provider. Suboptimal prenatal care (PNC) has been shown to be related to adverse pregnancy outcomes. Krueger et al. evaluated adequacy of prenatal care (PNC) among pregnant women via two different indices. Depending upon which index is used, between 17.8% and 29.4% of pregnant women received inadequate PNC, resulting in a two-fold increase in risk of preterm birth (Krueger & Scholl, 2000). Inadequate PNC has also been shown to be associated with low birth weight among infants (Vale et al., 2021). Appropriate intrapartum care has also been shown to be associated with decreased adverse birth outcomes. Of note, use of the WHO checklist raised the care level for women with PE 8-fold (Yasin et al., 2025). Physician bias has been shown to impact health care in multiple settings, especially among racial minorities (Duberstein et al., 2025; Salahshurian & Moore, 2023). Salahshurian et al. identified the need for mutual respect, effective communication, shared decision making around pregnancy and childbirth among black women (Yasin et al., 2025) though these findings are relevant for all pregnant people.

Need for mental health resources and support tailored for women experiencing PE in and beyond postpartum. Study participants endorsed a need for mental health resources following their preeclamptic pregnancy. Yet, current guidance for clinicians who are following PE survivors does not recognize the need for mental health screening and referrals, focusing instead entirely on physical health (Patient Safety and Quality Committee et al., 2020). However, traumatic birth experiences, including preeclampsia, have been shown to be associated with PTSD (Horsch et al., 2024; Porcel et al., 2013; Suarez & Yakupova, 2024). Further, postpartum PTSD has a lasting impact on maternal mental health as well as child development (Suarez & Yakupova, 2024) indicating the importance of identification and treatment of women at risk. Maternal stress during a PE pregnancy can be further passed on to the infant, with studies suggesting male offspring have an increased risk of developing anxiety and depression whereas female offspring are at increased risk of developing memory impairment (Vélez-Godínez et al., 2024).

Need for clinicians to discuss family planning options for women who had experienced PE. After their affected pregnancy, women described a decreased interest in having additional children. Schaaf et al. evaluated a cohort of women with early onset PE at 6–12 months after delivery and noted that most survivors had achieved or indicated a desire to achieve a subsequent pregnancy (Schaaf et al., 2011). In this population, 19.1% of survivors indicated actively wanting to get pregnant while 15.1% reported that they do not want to become pregnant. These findings are only partially supported by our results. While some women indicated a strong desire for another child, many reported that they would delay pregnancy or forgo it entirely due to fears surrounding their or their infant’s health and the impact another affected pregnancy might have on the family. Given that longer interpregnancy intervals have been suggested as a risk factor for recurrence (Gebremedhin et al., 2021; Howe et al., 2018), decisions to delay a subsequent pregnancy may have implications for preeclampsia risk.

This research has limitations. First, qualitative research methods do not establish cause and effect, but were selected to identify contextual factors that contribute to how women with PE make family planning decisions. Second, our study sample was not randomly selected and therefore may not be representative of all women experiencing PE and thus may not generalize to other women with similar experiences. Third, our qualitative data is limited to self-reported experiences with PE and related family planning by participants after their pregnancy and may be subject to recall bias. Despite these limitations, our methodology was well suited to offer valuable insights into the complex relationship between PE experiences and future pregnancy decisions. The qualitative data provided rich descriptions of women's experiences and perspectives, offering a deeper understanding of the factors influencing their choices regarding future pregnancies.

Take-Home Message

Our findings support several recommendations. First, the need for ongoing training and education for clinicians and medical students on addressing women’s reports of PE symptoms that is reaffirming instead of dismissive. Second, the need for clinicians and health systems to create or direct women experiencing PE during the prenatal, birth, and in the postpartum period for PE-specific therapy, support groups, and therapy that are person-centered and informed by trauma- and evidence-based care and practices. Third, the need to develop family planning clinician protocols informed by women’s lived experiences with PE and the need to minimize risk of PE with future pregnancies.

Conflicts of Interest

No conflicts of interest are reported for any of the authors.

Funding

There are no sources of funding to report.

Ethnical Approval

This study was approved by the University of Southern California Institutional Review Board ( UP-23-00579). All participants underwent the informed consent process via HIPAA-certified Zoom meetings.

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Exploring Unmet Needs and Family Planning Among Preeclampsia Survivors: A Qualitative Study

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Abstract

Background

Purpose

Methods

Results

Conclusions

Introduction

Methods

Data Collection: Semi-structured focus groups

Results

Synthesis and Interpretation

Discussion

Limitations

Declarations

References

Additional Declarations

Supplementary Files

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Version 1