Abstract
Background:
Hypertensive disorders of pregnancy (HDPs) are common pregnancy complications. The only curative treatment for HDPs is delivery. However, studies have shown that low-dose aspirin reduces the risks of HDPs.
Objectives:
The aims of this study were to elucidate barriers and facilitators to implementing evidence-based treatment to prevent HDPs from the patient perspective; and to characterize patient clinical experiences of the management of HDPs.
Design:
A cross-sectional qualitative study.
Methods:
Six focus groups were conducted with 26 birthing people who were pregnant between 2017 and 2024 with a history of HDPs. Thematic analysis was conducted by three independent coders using an ethnographic approach.
Results:
Patient experiences of optimal versus suboptimal care were characterized by three main areas: counseling and communication practices; decision-making practices; and intentionality of care. Intentionality as a guiding principle resulted in detailed counseling and communication of symptoms, severity, evidence-based management options, and implications. Additionally, intentional communication practices supported patient–provider relationship building and increased shared decision-making.
Conclusions:
Patient experiences emphasize the need for healthcare providers to adopt more intentional, personalized approaches to care. It is crucial to acknowledge existing power dynamics and take deliberate steps to ensure that care remains patient centered. An intentional approach enhances patient confidence in the care team, promotes greater patient activation, and supports uptake of preventive measures such as low-dose aspirin.
Plain language summary
Birthing people have experiences during pregnancy and childbirth that can be difficult, or even traumatic. However, we noticed that not everyone who has a complicated pregnancy or birth feels this way. Some people still felt positive about the care they received, even when things didn’t go as planned.
We conducted this study to understand why some people feel positive about their care, even when they have complications. We found that the key factor was intentional care. Intentional care was provided when healthcare providers took the time to explain things fully and clearly, listened carefully to the patient’s concerns, and involved the patient in making decisions about their care.
Birthing people who received intentional care had better relationships with their providers, felt more informed and more confident in their care team, and were more likely to follow medical advice. As a result of intentional care, birthing people felt more positively about their pregnancy and childbirth experience, even with complications.
Keywords
Introduction
In the United States, the pregnancy and birthing process can be traumatic, and in some cases, deadly for birthing people and families. Between 2017 and 2021, the United States maternal mortality rate was 22.4 deaths per 100,000 live births. When disaggregated by race, American Indian/Alaska Native and non-Hispanic Black populations suffered the highest maternal mortality rates of 60.6 and 51.3 deaths per 100,000 live births, respectively. 1 During the same time-period, the Kansas maternal mortality rate was 20.9 deaths per 100,000 live births. 2 When disaggregated by race, the Kansas non-Hispanic Black maternal mortality rate was 100.3 deaths per 100,000 live births between 2018 and 2022. 2
However, maternal mortality does not exist in a vacuum. Rather, mortality is a stop on the continuum of health. This continuum begins with wellness, progresses to morbidity, then severe morbidity, and finally mortality.3,4 In addition, far more birthing people experience maternal morbidity and severe maternal morbidity than mortality. 5 As such, it is useful to interrogate experiences of morbidity and severe morbidity to elucidate approaches that may prevent mortality.
Hypertensive disorders of pregnancy (HDPs) are common pregnancy complications that contribute to maternal morbidity and mortality. They encompass a range of pregnancy disorders, including chronic pre-pregnancy hypertension, hypertension developed within the first 20 weeks of gestation, and hypertension developed after 20 weeks of gestation. 6
Between 2017 and 2019, HDPs were the leading underlying cause of death in 7% of all pregnancy-related deaths. 7 Approximately one in seven delivery hospitalizations across the United States were affected by HDPs. 8 Among non-Hispanic Black people, cardiac and coronary conditions such as hypertension were the leading underlying cause of pregnancy-related deaths. 7 Prevalence of HDPs was found to be highest among delivery hospitalizations of non-Hispanic Black women delivering in hospitals in the South or Midwest census regions. 8
International studies have demonstrated that low-dose aspirin (50–150 mg/day) reduces the risk of HDPs.6,9 As a result, many of the nation’s health and gynecological organizations such as the United States Preventive Services Task Force (USPSTF) and American College of Obstetricians & Gynecologists (ACOG) recommend low-dose aspirin for birthing people at high risk of preeclampsia.
As guidelines are developed and evidence grows for clinical interventions, patient perspectives on the management of HDPs remain underexplored. Limited exiting research has shown that patients often experience confusion or dissatisfaction with how HDPs are managed.10,11 Miscommunication between patients and providers has also been cited as a contributor to adverse outcomes, particularly during the postpartum period, where inadequate communication can result in delayed recognition of worsening symptoms and hospital readmission. 10 Additionally, some patients report being unaware of the long-term health risks associated with HDPs, partly because some providers preferred to provide counseling at outpatient postpartum visits when many patients are lost to follow-up. 11 Findings from a study in Australia have similarly revealed variation in patient experiences, highlights the importance of clear, accessible information about HDPs, and the need for better provider–patient communication throughout the perinatal period. 12 In addition, innovative strategies, such as blood pressure self-monitoring and the use of community health workers, are being explored as methods to improve HDP management, but research is still emerging. 13
Underlying clinical practices is a theory of power dynamics within the provider–patient relationship. While clinicians and health systems may endeavor to practice shared decision-making, real clinical encounters often retain asymmetries of power. 14 Clinicians hold expert knowledge, institutional legitimacy, and authority. This can limit patient’s ability to fully participate in their care. This is particularly relevant in managing HDPs because patient involvement in decision-making and participation in care may influence patient activation and uptake of evidence-based interventions. This study aims to explore patient perspectives on clinical care practices related to the management of HDPs. Specifically, we examine the characteristics of care that patients perceived as positive, even in the context of pregnancy complications. Additionally, we seek to identify patient-reported clinical care practices that may serve as barriers or facilitators to the implementation of evidence-based interventions, such as low-dose aspirin for the prevention of pregnancy-related hypertension.
Methods
Setting and participants
We conducted a cross-sectional qualitative study to assess patient perception of clinical management of HDPs. Eligible participants were adult (⩾18 years of age) birthing people of child-bearing age (18–44), were pregnant between 2017 and 2024, and had a self-identified history of high blood pressure and/or preeclampsia. We describe participants as birthing people in order to be more inclusive of the full spectrum of pregnancy and birthing experiences. Participants with pregnancies prior to 2017 and/or no self-identified history of high blood pressure and/or preeclampsia were excluded from the study.
Participants were recruited via local clinical healthcare organizations, non-clinical community organizations, and snowball recruitment methods. The research team leveraged relationships with community leaders and community organizations who were members of the Kansas Birth Equity Network to distribute flyers at community events and clinics. Participants were also asked to share the study flyer with their networks who may be eligible to participate. Local participants provided relevance to the Midwest population. Participants received a monetary incentive in the form of a Visa gift card for participation.
Focus groups and data collection
Six focus groups of three to six participants (n = 26) were conducted between August 2022 and November 2024. To determine eligibility, the research team utilized REDCap15,16 to deploy an interest survey to participants. Fifteen individuals indicated interest but did not consent to participate in the study. Participants were not required to provide a reason for non-participation. Eligible participants reviewed and completed an IRB-approved, electronic, written consent form and a demographics survey with the following variables: age range, location, race, ethnicity, language, marital status, level of education, household income, number of children, and pregnancy outcomes (i.e., hypertension, preeclampsia, low birth weight, preterm birth, and aspirin prescription). All participants reviewed and completed the informed written consent form prior to the focus group. Signed electronic consent forms were stored on the secure, institutional REDCap server. In addition, the facilitator verbally reviewed the consent form at the beginning of the focus group and obtained verbal consent from participants.
All focus groups were conducted via Zoom, recorded with participants’ permission, and transcribed verbatim. All sessions were led by the same facilitator. Two study team members served as notetakers and provided virtual meeting support. Each session lasted between 60 and 90 min. Data saturation was reached by the sixth focus group.
Most participants had not previously met the facilitator but were aware that she is a researcher and associate professor. Some participants had previously met the facilitator and recognized her as the founder of a statewide initiative dedicated to community-centered research in maternal and child health. The facilitator followed a focus group guide that included questions on perception of the causes of HDPs, awareness of HDPs prior to and during pregnancy, awareness of the impact of HDPs on the pregnancy and birthing process, awareness of evidence-based treatment options, attitudes toward low-dose aspirin, barriers and facilitators of aspirin uptake, and perception of clinical care. The focus group guide was not pre-tested and is included in the Supplemental Material.
Data analysis
Quantitative data were summarized using descriptive statistics. All focus groups were transcribed by a university-approved private contractor, and transcripts were de-identified. Thematic analysis was conducted using an ethnographic approach. Three coders independently reviewed the first transcript and used inductive analysis to identify themes. The reviewers met and compared their codebooks to obtain inter-coder reliability. The following focus group transcripts were reviewed, and deductive reasoning was used to classify statements into the themes and subthemes in the codebook. If any additional themes were identified, they were reviewed, agreed upon, and added to the codebook.
Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were utilized in preparing this manuscript. The COREQ checklist is available in the Supplemental Material. 17
Results
Six virtual focus groups were conducted, with 26 participants engaged in discussion surrounding clinical management of HDPs. Approximately 50% (n = 13) of participants reported their race as Black or African American and 19.2% reported being of Hispanic/Latina origin. Participants were able to select multiple race categories. 46.2% (n = 12) of participants were between the ages of 25 and 34; 53.8% (n = 14) were between the ages of 35 and 44. More than half of participants (n = 14, 53.8%) reported having completed a bachelor’s degree or higher, and 17 (65.4%) reported an annual household income less than $65,000. Less than half of participants (n = 11, 42.3%) reported receiving a low-dose aspirin prescription during pregnancy (see Table 1).
Participant characteristics.
Participant characterization of their experiences with clinical management of HDPs was determined by (1) counseling and communication practices, (2) decision-making practices, and (3) intentionality of care. The main themes that characterized experiences of sub-optimal care were (1) insufficient counseling and communication, (2) lack of shared decision-making, and (3) unintentional care. Conversely, experiences of optimal care were characterized by (1) intentional counseling and effective communication, (2) shared decision-making, and (3) intentional care. Participants also highlighted barriers and facilitators of aspirin uptake related to the level of patient activation.
Counseling and communication
Participants described optimal and suboptimal experiences with counseling and communication received during pregnancy.
Experiences of insufficient counseling and communication included the lack of discussion on the long-term impacts of HDPs on health and impact on future pregnancies; insufficient communication on signs and symptoms; undisclosed diagnoses of HDP, lack of clarity on the purpose of aspirin, and aspirin conversations that were initiated and prioritized by the patient. One participant stated, “They didn’t prescribe it to me. I was reading about it & I asked at one of my appointments ‘should I be taking baby aspirin?’, and they were like, ‘Oh, yeah, if you’re not taking it already you should be.’ If I hadn’t brought it up, I don’t know if it would have been raised for me” (see Table 2).
Excerpts.
Intentional counseling and effective communication were characterized by detailed conversations on the signs and symptoms of HDPs, the long-term impacts of HDP, and the impact on future pregnancies. Participants also highlighted provider-initiated conversation on low-dose aspirin, as well as an explanation of the benefits of aspirin. Generally, participants with experiences of optimal care reported receiving care that felt personalized and providers who were specifically invested in their well-being. One participant stated, “She was very clear, she wanted to make sure that I was monitored well. . .she was just very on top of it. She made sure that I knew what to expect, what to look for and that I was checking on myself and taking care of myself” (see Table 2).
Decision-making
Patient inclusion in decision-making was another marker of optimal versus suboptimal care. Participants who reported suboptimal care highlighted a lack of shared decision-making and inclusion in their clinical care. Participants were discouraged from future pregnancies, with contraception and sterilization procedures recommended without prior discussions regarding their reproductive goals. Without conversations about the patient’s reproductive intentions, discouragement of future pregnancies and contraception recommendations were perceived as ultimatums. These were seen as decisions imposed on the patient, rather than collaborative decisions based on the patient’s medical history and made with support and information provided by the healthcare provider. Some participants also perceived these recommendations as an assessment of their parental fitness. One participant highlighted this, stating, “They definitely tried to get me to tie my tubes after two premature babies. They were really big on getting my tubes tied but I did not.”
Conversely, participants with experiences of shared decision-making reported intentional and personalized conversations about their reproductive goals, long-term impacts of HDPs, and their personal risk of hypertension in future pregnancies. These discussions with their care team allowed them to make decisions collaboratively with their healthcare provider, subverting traditional provider–patient power dynamics and fostering a patient-centered approach. One participant highlighted this experience, saying, “My doctor and I had in-depth conversations about the increased risk of preeclampsia the more pregnancies you have. . .we came to terms together that for my health, future pregnancies were not a good idea for me” (see Table 2).
Due to the power dynamics, patients often perceive clinician recommendations and treatment plans as mandatory instructions, even when unintentional. Consequently, interactions that do not prioritize shared decision-making can intensify feelings of disempowerment and a diminished sense of control over healthcare decisions. These patient experiences underscore the power differential between patients and healthcare providers, emphasizing the importance of intentionally disrupting the current power dynamic and supporting patients in making their own healthcare decisions.
Intentionality of care
A key factor of participants’ perceptions of the quality of care received was the intentionality of care. Participants who described experiences of unintentional care cited dismissed symptoms, a lack of cultural competency, an unwillingness to acknowledge the impact of the maternal mortality crisis on the birthing experience, and poor transition of care.
Participants reported feeling dismissed by their healthcare providers, leading to traumatic birth experiences that may have been preventable with earlier intervention. One participant stated, “My blood pressure was high, and not enough was done. He was just like, ‘it went down just a little bit but it’s enough for me to send you home.’ I was in the ER a day later. If he would have tried to figure out what was going on, it wouldn’t have got to this point” (see Table 2).
The participants described a pervasive sense of unintentional care, noting that their providers seemed apathetic toward their personal well-being, which contributed to a perception of lower-quality care. Additionally, participants shared that a lack of cultural competence among providers resulted in the dismissal of how the maternal mortality crisis uniquely impacted the pregnancy and birthing experiences of Black birthing people and birthing people of color. One participant stated, “I do feel very cheated about my experience because I was not taken care of. I don’t think they really cared” (see Table 2).
Furthermore, the lack of intentional care also resulted in poor transition of care from obstetrics and gynecology to family medicine during the postpartum period. Many participants described not having an established family medicine provider, and therefore not being seen in the postpartum period by a healthcare provider. This highlights an opportunity for personalized and intentional care by ensuring a postpartum visit is scheduled prior to discharge.
Conversely, participants who experienced optimal care emphasized the intentional approach taken by their healthcare providers. These participants noted that discussions about low-dose aspirin were initiated early, with providers engaging in thorough conversations about its benefits and potential side effects. This approach fostered a clear understanding of the importance of low-dose aspirin and facilitated its uptake. Additionally, participants with positive clinical experiences felt that their providers prioritized an optimal birth outcome, their overall well-being, and genuinely addressed their concerns. A participant stated, “I felt like my provider was really trying to be very thorough. She took those extra steps to ensure that it wasn’t turning into preeclampsia. . .she did mention preeclampsia from the get-go, she did tell me that it was very dangerous,. . .and so I felt like she really educated me well and spent the time to actually inform me about it” (see Table 2).
Barriers and facilitators of aspirin uptake
Self-reported barriers to aspirin uptake were primarily associated with low patient activation. Participants indicated a lack of sufficient information regarding the benefits and potential side effects of aspirin, leading them to forgo its use. Some participants expressed safety concerns due to pregnancy-related warnings on aspirin labels, while others felt indifferent due to either being unaware of its benefits or not receiving adequate information from their providers to support the recommendation. Additionally, some participants reported not taking low-dose aspirin because it was never prescribed, and they were unaware of its role in preventing HDPs.
As expected, facilitators of aspirin uptake were primarily associated with higher levels of patient activation. These participants indicated an awareness of low-dose aspirin as a preventive measure. For some, awareness of low-dose aspirin was due to thorough conversations with clinicians. For others, awareness of low-dose aspirin was due to a family member or friend with prior knowledge of low-dose aspirin. Low-dose aspirin uptake was also supported when clinicians addressed safety concerns and when aspirin was formally prescribed rather than suggested for over-the-counter purchase.
Discussion
This study explored patient perspectives on the clinical management of HDPs. We also assessed patient-reported barriers and facilitators to the uptake of low-dose aspirin, an evidence-based intervention for HDP. Our findings revealed that experiences of clinical management of HDPs were shaped by three primary factors: (1) counseling and communication practices; (2) decision-making practices; and (3) intentionality of care.
Participants who experienced optimal care reported intentionality as a guiding principle of clinician behaviors. These clinicians engaged in proactive communication, offered clear, timely, and effective counseling, and meaningfully involved patients in decision-making. Notably, intentionality in clinical care created an environment that was not only medically responsive, but emotionally supportive, validated patient concerns, and enhanced trust. Participants who experienced intentional care, reported a more balanced provider–patient power differential, instead of a paternalistic provider–patient relationship. In contrast, experiences of suboptimal care were characterized by a lack of intentional care. These clinical care experiences were marked by inadequate communication and rushed or unclear counseling. These participants highlighted power dynamics that did not support shared decision-making. As a result, participants did not believe that their care team was invested in their well-being. Furthermore, participants reported paternalistic provider–patient dynamics in which clinician recommendations being conveyed as ultimatums. These findings underscore the enduring influence of power dynamics within the provider–patient relationship. 14 While contemporary healthcare emphasizes shared decision-making and patient empowerment, these goals are often limited by structural and interpersonal asymmetries. Providers’ institutional authority, control of medical knowledge, and time-constrained practices can unintentionally reinforce patient disempowerment, especially for those already navigating systemic inequities related to race, gender, socioeconomic status, and other social determinants of health. Participants in this study clearly identified these dynamics, describing how lack of transparency, dismissiveness, or rushed interactions made them feel excluded from their own care—even during critical moments of clinical decision-making.
The findings also echo and expand upon prior research. Previous studies have shown that miscommunication between patients and providers in the management of HDPs—particularly during the postpartum period—can lead to adverse outcomes such as readmission and delayed recognition of symptom severity. 12
Importantly, participants in this study linked intentional care not only to better communication but also to their willingness to engage in preventive strategies such as low-dose aspirin use. When patients felt informed and involved in care decisions, they expressed greater trust in clinical recommendations and a stronger sense of agency. This highlights a critical implication: enhancing the relational and communicative aspects of care is as important as disseminating clinical guidelines when it comes to improving the uptake of evidence-based interventions.
Limitations
This study has several limitations that should be considered when interpreting the findings. First, the relatively small sample size of 26 participants may limit the generalizability of the insights gained on patient experiences of HDP management in clinical care settings. However, it is notable that our findings closely align with existing literature, which supports the relevance of our results.
Second, the study sample was primarily composed of individuals identifying as Black, White, or American Indian residing in the Midwest. Therefore, these findings may not be fully generalizable to other racial or ethnic groups, or to populations in different geographic regions with potentially distinct healthcare systems and sociocultural contexts.
Additionally, the study was limited to English-speaking participants, which excludes the perspectives of birthing people who may face additional challenges navigating the healthcare system due to language barriers. This limited our ability to capture the full diversity of patient experiences, particularly for non-English-speaking populations.
Finally, the reliance on self-reported data introduces the potential for recall bias, as participants reflected on clinical care experiences that occurred between 2017 and 2024. This retrospective reporting may affect the accuracy or completeness of their recollections.
Conclusion
Ultimately, the experiences shared by participants emphasize the need for healthcare providers to adopt more intentional, personalized approaches to care, fostering collaborative decision-making and ensuring clear, empathetic communication.
To better support patients, providers and health systems must examine relational dynamics, acknowledge existing power dynamics between patients and providers, and take deliberate steps to ensure that care remains patient-centered. Intentionality must by operationalized through concrete actions such as allocating time for meaningful counseling, involving patients in decision-making, and accounting for the patient’s lived experience.
An intentional approach to care enhances patient confidence in the care team, promotes greater patient activation, and ultimately supports the increased uptake of evidence-based preventive measures such as low-dose aspirin.
Supplemental Material
sj-docx-1-whe-10.1177_17455057261435102 – Supplemental material for Patient perspectives on the clinical management of pregnancy-related hypertension: A qualitative data analysis
Supplemental material, sj-docx-1-whe-10.1177_17455057261435102 for Patient perspectives on the clinical management of pregnancy-related hypertension: A qualitative data analysis by Oluoma F. Obi, Shea J. Kampsen, Erin Attebery, Sharon Fitzgerald Wolff and Sharla Smith in Women's Health
Footnotes
Acknowledgements
None.
Ethical considerations
This study was reviewed and approved by the Institutional Review Board of the University of Kansas Medical Center (Reference number: IRB00000161) on November 14, 2019.
Consent to participate
Eligible participants reviewed and completed an IRB-approved, electronic, written informed consent form prior to the focus group. Signed consent forms were stored on the secure, institutional REDCap server. In addition, the facilitator verbally reviewed the consent form at the beginning of the focus group and obtained verbal consent from participants. This study was reviewed and approved by the Institutional Review Board of the University of Kansas Medical Center (Reference number: IRB00000161).
Consent for publication
Consent for publication was obtained from participants through the written informed consent and verbally during each focus group. Participant responses have also been de-identified.
Author contributions
Funding
The authors disclose receipt of the following financial support for the research, authorship, and publication of this article: This study was funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health (Award number K01HL149977).
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability statement
Data generated or analyzed during this study are included in this published article (and its Supplemental Material).
Supplemental material
Supplemental material for this article is available online.
References
Supplementary Material
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