Methods
We implemented a qualitative multilevel study
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to illuminate problems at the intersection of RH and CC, their causes, and needed actions to address them. Focus groups were used to obtain data from groups engaged at multiple levels of the system, and perspectives were triangulated during data analysis to identify cross‐sector themes within the systems thinking iceberg and actions needed to address each.
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Participants represented specialty care providers, primary care providers, patient advocacy groups, payers, policy makers, and chronic disease public health professionals.
A convenience sample was recruited via the Pregnancy and Reproductive Intentions Research Group, the experts participating in the Connecting the Dots II: Reproductive Health for Women with Chronic Conditions consortium, and various women's health and chronic disease care professionals whose expertise in this space was known to or identified by (i.e., through Internet searches) the authors and consortium members between December 2021 and February 2022. Participants were contacted via email, and snowball sampling was used for additional recruitment striving to diversify perspectives. Data were collected through six semistructured sessions. All group discussions were held over Zoom and lasted approximately 90 minutes. Sessions were grouped by a sphere of work so that each included one group from the six named above. Group discussions began with a session overview, and participants provided verbal consent to record the discussion. Facilitators provided an overview of what was known about RH for women and birthing people with CC based on the literature and recently completed patient engagement.
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Participants then partook in a discussion co‐facilitated by two researchers with qualitative expertise and facilitation experience (KHL, PhD and EKM, MA, MPH). Notetakers assisted with the meetings. All meetings were recorded and stored on a secure share drive requiring permissions and password access. Participants were offered a $100 gift card for their time.
Main data collection tools included a facilitation guide and an interactive Jamboard
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used to organize findings in real time. The facilitation guide was informed by the PCORI Engagement Project: Optimizing Reproductive and Preconception Health for Women with Chronic Conditions
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that collected insight from patients with CC regarding RH and influenced by systems thinking and a reproductive justice framework.
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Discussion topics included manifestations of system problems at the intersection of RH and CC, needed changes, system actors implicated, and challenges of change. Please see Supplemental Materials for the full facilitation guide.
Researchers involved in the qualitative analysis were public health professionals or students (public health and medicine). Additionally, some analysts on the team have direct experience with navigating care while experiencing a chronic illness. All identified as women.
Analysis was completed by two coauthors (CS and HF) with qualitative and systems thinking experience and overseen by KHL. Data were originally collected in Jamboard notes taken during the focus groups (by KHL) and extracted from written notes and the session recordings (CS and HF).
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Saturation was expediated because we asked participants about what role they imagined other actors needed to play in creating change, and these suggestions were collected, verified, and expanded on by the groups who were also tasked to propose specific interventions. Later focus groups ended earlier than 90 min with no unique information added, and patient‐related themes were resonant with our previously‐published focus group study with patients.
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Data were triangulated across focus group perspectives during the analysis phase.
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Multilevel themes were identified through iterative documenting, sorting, and discussion to align with the systems thinking iceberg framework.
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Specifically, we documented and mapped mentioned system actors, cross‐system pain points with resulting problem manifestations, and potential actions related to each pain point described across focus groups.
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Following the systems thinking iceberg framework,
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pain points threatening outcomes at the intersection of RH and CC were sorted into undesirable events, contributing/concerning trends, system structure flaws, and problematic mental models. Through discussion among the research team, thematic consolidation of (a) related pain points within each iceberg level and (b) action ideas resulted in clusters (action themes) based on similarity, (e.g., action ideas related to medical education were grouped under “bolstering medical education about RH”). Action ideas were then linked back to specific pain points that they targeted. A Kumu diagram
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visualized interconnections between pain points and action themes, action themes and specific action ideas, and action ideas and the actors needed to influence/create change. Careful review of project data by the whole research team, ongoing full team discussion, iteration, approval, and discussion of themes with consortium members were used to ensure findings were representative of group sessions.
This study was reviewed by the University of North Carolina at Chapel Hill IRB #2103263 and determined to be not human subjects research.
Results
We convened six groups comprised of system actors with similar roles: primary care providers, specialty care providers, chronic disease directors, patient associations, payor organizations, and policy‐focused individuals. The participants ( N = 29) represented 9 out of 10 US Department of Health and Human Services (HHS) regions and were from universities, governmental agencies, not‐for‐profit organizations, and for‐profit organizations such as payors. Researchers had prior professional connections with eight of the participants. The primary care provider group included five physicians and advanced practice nurses. The specialty care provider group included five physicians from different specialties—obstetrics and gynecology, substance use, cardiology, rheumatology, and pulmonology. There were chronic disease directors or their representatives from five different HHS regions present at the chronic disease directors' discussion. The policy‐focused discussion included seven representatives from a variety of academic and nonprofit settings. The condition and patient association group had four representatives from groups focused on mental health, cardiac, and autoimmune conditions. Three Medicaid managed care/population health representatives from two private payor entities joined the payor discussion.
Participants described eight primary system actors necessary for improving RH care provision and planning among women and birthing people with CC (Figure 1 ). They include patients and families, medical providers, patient foundations and advocacy groups, payors, policymakers, medical leadership, health care institutions, and research funders. Participants described patients and families as the central focus of interventions. Subgroups among the main categories of system actors include clinicians of different specialties (e.g., primary care vs. OB/Gyn), professional bodies versus more localized medical leadership, and private versus public payors.
Identified system actors [Color figure can be viewed at wileyonlinelibrary.com ]
Figure 2 presents the problems and pain points that were gathered and organized into the four levels of structural depth: (1) undesirable events, or what we see, (2) concerning trends, or persistent undesirable outcomes, (3) system structure flaws, or characteristics of the system that negatively impact outcomes, and (4) problematic mental models, or foundational beliefs or mindsets that shape system structure. Within levels, pain points are grouped broadly by society, health care system, or clinical care, resulting in specific clusters across iceberg levels. Undesirable outcome clusters (above the waterline) include those that relate to poor clinical coordination, suboptimal reproductive and pregnancy care, and postpartum/interconception health impacts. For concerning trends, the sociopolitical climate, ill‐equipped health care system, and patchwork medical response were described. System structure flaws encompassed political and financial constraints, missing information, models, and incentives, and an unprepared workforce. Finally, problematic mental models were shaped by oppression and stigma, political and economic assumptions, and ways in which medicine is practiced in the United States. The problematic mental models at the deepest level of the iceberg are often the hardest components to change due to their broad pervasiveness in society, but participants came up with proposed action ideas that targeted all four levels.
Iceberg model of pain points in the system. This figure features an iceberg model, a systems thinking tool that illustrates how multiple layers contribute to challenging problems, manifesting in undesirable outcomes that are the easiest to see during initial diagnosis. By describing deeper layers that feed into the resulting events, we see how additional changes are needed to improve structures that shape these undesirable outcomes. These “below the waterline” contributions are typically divided into the following levels: patterns/trends, system structure, and mental models. In addition to vertical reading of the diagram (top to bottom) to understand the four layers of the iceberg, we have added horizontally (left to right) the level at which elements of the iceberg are implicated (i.e., broader society, the health care system, and clinical care) with a color scheme indicating the range from deeper to more superficial aspects of the iceberg manifestations. [Color figure can be viewed at wileyonlinelibrary.com ]
Nine action themes were described by participants. These include: (1) adjust quality improvement (QI) metrics, incentives, and reimbursement; (2) bolster RH provider education and training; (3) break down medical silos; (4) enrich patient education; (5) expand health care teams; (6) provide holistic health care; (7) modify research and programmatic funding to prioritize RH and CC; (8) spur innovation in patient visits; and (9) support professional champions and leaders. A total of 46 specific action ideas were described, ranging in difficulty from incorporating RH screeners into clinics to completely shifting the mindset of American medicine away from profit toward patient‐centered care. For each action idea, system actors responsible for or able to influence change were identified. Table 1 presents action ideas by action theme, noting relevant system actors. Two additional charts are included in Supplemental information: one has descriptions of all action ideas, and another includes action themes organized by system actor.
Action themes, action items, and assigned system actors. Key: CCs—chronic conditions, RH—reproductive health
Action themes 1, 3, and 6 were the most prioritized and central to our participants' visions of improved RH/CC care.
Overall, the most common action theme was improve provision of holistic health care for women and birthing people living with CC, which cuts across all system actors. Critiques of the American health system centered on the ways in which fragmented and siloed care allows this demographic to fall through the cracks. Incorporating RH into the care patients are already utilizing—or being connected to high‐quality RH care when complex CC requires additional expertise—was the mechanism that many participants described as an important step for better integration of care. They described immediate ways of doing this, such as creating referral pathways within a given health care institution or local area. Participants also recommended actions that could help over time, such as changing medical training for more overlap between CC and RH, reorganization of siloed funding to prioritize intersections, and shifting to a preventative and life course‐focused lens as opposed to only focusing on pregnancy.
At the patient–clinician level, there is a need to enrich patient education and activate patients . Participants explained that research funders and health care institutions must develop up‐to‐date, nonjudgmental materials with information on RH, contraception, and pregnancy for those with a particular condition. To provide integrated care to patients and maintain engagement, the health care team should be expanded to include community health workers, doulas, patient navigators, and other allied health providers. Expanding the care team reduces the burden on physicians and provides patients with a more comprehensive medical home. Spurring innovation in patient visits also improves the system at the patient–clinician level. This can be achieved by adding RH screening in electronic health records (EHR) and allowing clinicians to be reimbursed for providing this service. Reimbursement for telehealth and group visits would provide more choices for patients. Implementing evidence‐based workflows, such as patient safety bundles, and disseminating inclusive and accurate patient‐facing materials can improve the care experience for patients and providers.
Health care organizations have significant power to improve the system for patients and providers by breaking down medical silos. Participants recommended developing strong referral pathways to ensure patients receive RH counseling from a knowledgeable provider and to address gaps in care for patients who already likely have multiple providers. Maintaining clear lines and protocols for communication between clinicians is another way to integrate care and center patient needs. For example, participants described how health care organizations should develop a protocol for deciding which provider is responsible for RH‐related care and manage provider expectations.
For professional societies, medical and nursing leadership can bolster RH education and training by including RH content as a standard component of provider curricula (especially in residency programs that have less overlap with RH), increasing cross‐specialty education, conducting relevant continuing education, and gathering support from professional associations to prioritize this issue. Leadership bodies can require participation in training for providers who are resistant to engage with RH. Professional leadership can also work to combat some of the problematic mental models that impact their professions, while partnering with system actors at many of the other levels to make change.
When considering payors, participants explained that adjusting QI metrics, incentives, and reimbursement mechanisms can reorient the system to value RH care for those with CC. One way to achieve this is to advocate for value‐based care models that include RH priorities. They recommended making the business case for this issue by linking health disparities to organizational spending and researching cost‐effective interventions, noting that this can engage otherwise neutral leadership. They also reported that expanding Medicaid funding to reimburse organizations for RH intentions screening and care would improve outcomes. For research funders, modifying grant and programmatic funding to study RH and CC was suggested to provide investment in this important intersection. Formation of a government‐funded institute dedicated to understanding women's health across the life course, including those with CC, could eventually improve care received by patients and improve clinician understanding of the issue.
At the level of the social system, participants described how any interventions in the CC–RH intersection needed to incorporate a lens of reproductive justice due to the long history of discrimination and abuse surrounding RH, especially for those who have some form of CC and/or have been marginalized. Building solutions prioritizing the needs of women and birthing people of color, as well as those with low income and low health care access, was a priority among participants, especially as discrimination based on these factors increases risk for adverse outcomes. Supporting professional champions and leaders across all sectors—especially those who are women and have expertise in equity—was suggested to increase attention to RH care while also centering reproductive justice for the most vulnerable.
An interactive system map was generated for analysis and to support the interested reader in appreciating interconnections between system actors, pain points, and action ideas. Figure 3 represents the map, though interaction with it online enhances readability and reduces system complexity; when the user hovers over an element, all interconnected elements are highlighted, an example of which is illustrated in Figure 4 .
Schematic of full online interactive model showing connections between concepts [Color figure can be viewed at wileyonlinelibrary.com ]
Example of focus features of interactive system map available online [Color figure can be viewed at wileyonlinelibrary.com ]
Discussion
Our study described input from diverse participants on how to improve RH for women and birthing people living with CC. Participants identified a broad set of system pain points that together produce undesirable RH care for people with CC. Pushing to deeper levels of what is often hidden under the waterline through considering the iceberg framework,
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they described concerning trends, system structure flaws, and problematic mental models that allow these undesirable events to persist. This systems thinking approach to multilevel research strives to illuminate the many systemic issues that need to be addressed for meaningful change to occur. From this foundation, we identified system actors who need to support change, linking them to identified action ideas targeting each pain point in the iceberg. While other studies and reports have verified that this problem is complex and needs collaboration across sectors to make change, to our knowledge, ours is the first that specifically uses a systems thinking lens and incorporates visual characterizations that illustrate the depth of identified problems and the complexity of requisite action.
Our findings did not center on what patients can do differently to improve their health.
Interestingly, despite many other studies focusing on “self‐efficacy” and “self‐management” strategies for CC,
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our participants did not often discuss ways to bolster these approaches. Instead, participants largely focused on the structure of the system (e.g., the iceberg) and professional system actors, describing how multiple levels of change are needed to provide better care. An example of a “system problem” is stigma, which is prevalent in RH care for people with CC
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and a foundational cause of health disparities.
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Oppression and stigma (stemming from racism, sexism, transphobia, ableism, etc.) are societal problematic mental models featured in our iceberg framework, and efforts to improve the ways in which society assigns shame and stigma may result in better outcomes at multiple levels of the iceberg. Currently, stigma leads to provider incorporation of social or nonmedical factors when prescribing contraception (e.g., withholding it when they think it is inappropriate, pushing use on people they think should not have children) as opposed to medical need or patient request,
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illustrating how a problematic mental model becomes transformed into downstream concerning trends and undesirable outcomes. Breaking this cycle at the root can lead to more foundational and lasting change as compared with policies that do not recognize the source of inequitable clinical treatment and outcomes.
Patients need to be treated in a way that honors their complexity.
Drawing upon many of the action ideas described by our participants, it is clear that better knowledge and counseling approaches are needed. For example, patients may not fully understand the risks of CC to their RH
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; therefore, developing patient‐centered ways to hold those conversations, especially among specialties who might not manage either CC or RH regularly, requires individualization and adaptation as well as provider training
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(and notably, not just more patient education). Ultimately an interdisciplinary and individualized lens is necessary to support people seeking comprehensive RH and CC care,
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which was also echoed in our previously reported focus group study with patients.
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Addressing quality of life requires care that is not only concerned with the clinical implications of disease but also focuses on the specific ways in which this affects patients' day‐to‐day lives.
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In summary, participants stressed the importance of more holistic and supportive clinical services through efforts such as better provider training and cross‐training. Use of a patient's bill of rights was also suggested as a way to offer a standard for the care patients should routinely receive.
Collaboration is needed across all sectors.
There were no action themes generated that can be adequately completed alone, nor were there many action ideas with just one assigned system actor (Supplemental information). Patients express concerns about poor communication and collaboration between the teams that are supposed to be caring for them,
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yet collaboration in health care is complicated and influenced by organizational and individual factors.
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Our iceberg model shows just how many influences there are on ultimate health outcomes, and although eight groups of system actors were identified in this study, there are likely many more who play minor roles; in some cases, even defining what constitutes good health care collaboration can be a challenging task.
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For groups who build working relationships, the threat of “collaboration overload”
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is real, and teams can become overwhelmed by working together instead of making individual progress toward shared goals. The question of “ who is responsible for what? ” becomes critical for ensuring that system actors take appropriate responsibility without letting patients fall through the cracks,
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and thus was a guiding question of our study. Participants described the importance of developing specific referral pathways, using multiple levels of checks and balances to understand who should manage which aspects of care (e.g., a patient with CC who has RH needs and is not sure who is going to help manage their pregnancy), and trying to provide more in‐house care through connected services. For collaborations outside of the clinic, policy makers, payors, and health institutions have many shared responsibilities, and research funders and patient advocacy societies can also work to make changes that center RH and CC.
Incentives and requirements matter.
Just like patients are constrained in these systems, so are other actors,
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especially with additional burdens triggered by COVID‐19.
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Clinicians face considerable time and personnel constraints, health care institutions have budgets to balance, and even payors and policy makers have limits. Many of these constraints arise from deeper “mental models” that feed into the ways US health care is structured. Mental models are an effective point of leverage as they inform individual thoughts and actions and undergird systemic structures. As stated by Donella Meadows, “paradigms are the sources of systems.”
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Changing mental models through meaningful reflection and engagement shapes downstream behaviors of actors, triggering change throughout the entire system (iceberg). Another pillar of systems change, “incentives,” need to be adjusted and aligned, and top‐down requirements may need to be utilized until mental models shift. Changing mental models is time‐consuming, but developing appropriate tools, such as incentives and requirements, can help move goals forward while the underlying structure is still shifting. Health care institutions can drive change by re‐orienting QI efforts at the organizational level. Targeted QI interventions have been shown to work, for example in increasing screening rates for patients with CC.
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Similarly, health care institutions can develop a model of care that is value‐based, that serves people with CC, incorporates RH screening, and uses a reproductive justice lens. Being accountable to metrics such as these could improve clinical performance and patient outcomes.
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Medical education and professional associations are also influential system actors. Participants in this study often mentioned rapid change that can take place once educators and normative bodies publish standards and expectations, which is supported by studies showing that professional associations are key actors in promoting uptake of policy.
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Finally
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the system is working how it is designed to work
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There is a reason why our health system is so fragmented, and as the patchwork systems intersect to create patterns of care that are not patient‐centered, comprehending how we arrived here is a worthwhile exercise when trying to dismantle and rebuild this system. Our participants provided great insight into the pain points surrounding the provision of patient‐centered CC and RH care, and their action ideas are aspirational. Yet, it is also important to understand what system actors would actually be willing to change, how they would approach change, and why they would be motivated to do so. As the US continues to reckon with historical, structural, and systemic racism and other forms of injustice, there are system actors who are willing to work for change that targets the “undesirable events,” or what we can see above the waterline. Digging deeper into the problematic mental models may prompt changes that require system actors to make sacrifices that threaten their current system functioning. While seeking reproductive justice at all levels of RH/CC care is critical, a call echoed by many other groups in RH today,
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this requires a reworking of a system that benefits particular groups. Other aspects of the system, like profit incentives in medicine, also benefit specific groups at the expense of patients, and being realistic about system constraints that are advantageous to certain system actors may inspire action ideas that are grounded in pragmatism and possibility.
Our analysis yielded many potential action ideas and themes. We recommend three to focus on: Action Theme 1: adjust QI metrics, incentives, and reimbursement mechanisms , Action Theme 3, break down medical silos , and Action Theme 6, improve holistic health care . These themes are marked with a star in Table 1 . We recommend these because they involve diverse system actors, include a combination of more practical and aspirational goals, and in general, were stressed by our participants during data collection. There are also many different specific action ideas (seven for Action Theme 1, four for Action Theme 3, and eight for Action Theme 6) that can be adapted to a particular system actor's needs and sphere of influence. While we recommend priorities here, one of the strengths of our study is that different groups of system actors can work together to use our action theme and idea list (Supplemental information) to generate interventions and collaborations that best suit their patients' needs. These can be adapted based on institution focus, partnership possibilities, and available resources.
Our study has several limitations. We used a convenience sample of individuals, some of whom were known to research team members. Due to limited time with focus group participants, we were unable to co‐build the system model with participants, but did so by analyzing notes and transcripts. Like other qualitative studies, our findings may have been influenced by social desirability bias. Our focus groups occurred before the repeal of Roe v Wade , which may have limited generation of action ideas related to abortion care. While our participants did discuss restrictive policies toward women and birthing people in general, many of the discussion groups did not focus on abortion access or provide potential action ideas to target this concern. Finally, there are likely other system actors that would provide additional insight and other action ideas for intervention on this challenging topic.
Our study results can be used to guide intervention at multiple levels of the health care system to improve quality of RH care for patients with CC. These multilevel findings were accomplished by engaging diverse participants in structured systems thinking inquiry, documenting system actors needed to partner in change, and creating a system map and tables that allow exploration and visualization of the pain points that make this problem so hard to address without interdisciplinary engagement and specific action ideas. Future work is needed to determine what circumstances need to be in place for action ideas to be accomplished among different system actors.
Introduction
Over half of US adults have one or more chronic conditions (CCs) and nearly a quarter have two or more.
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Over 85% of health care costs are due to CC,
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and as these rates continue to rise,
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costs will likely increase, following a decades‐long trend.
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Women are more likely to have CC than men.
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Thirteen percent of women of reproductive age report hypertension, 12% asthma, and 6% diabetes.
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These data point to a need to ask about reproductive intentions, ensure understanding of the intersection of reproduction and CC, and examine the systems of care—specifically how these systems facilitate or hinder the actualization of women and birthing people's goals and desires. We use the CDC's definition of chronic diseases: they last one or more years and require ongoing medical attention and/or limit activities of daily living.
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Rates of CC during pregnancy are rising.
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Rates of miscarriage are higher among people with cardiometabolic conditions such as atherosclerosis, hypertension, and diabetes.
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Other conditions, such as endocrine disorders and endometriosis, also increase miscarriage risk.
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CCs put pregnant people at greater risk of maternal morbidity and mortality, a risk that is already much higher in the United States relative to all other high‐income countries.
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Common causes of maternal mortality and morbidity include cardiovascular disease, as well as rising rates of substance use disorders and mental illness.
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Due to historic and structural racism, there are significant racial inequities, with Black women being almost three times more likely to die of pregnancy‐related complications than White women.
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Health status before and during pregnancy has implications for maternal and infant health outcomes. Pregnant people with CC have a higher prevalence of preterm birth, low birth weight, and infant mortality, as well as an increased risk for some congenital anomalies.
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Pregnancy itself is physiologically taxing and can exacerbate CC or trigger or reveal underlying pathology with resulting CC, including cardiometabolic and autoimmune conditions, of which women carry a particularly heavy burden.
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In addition to risks during and after pregnancy, people with CC may experience discrimination and stigma when seeking reproductive health (RH) care due to their health status.
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A long history of reproductive injustice also shapes the way in which women and birthing people relate to RH decisions, resulting in women of color, those with LGBTQIA+ status, and other minoritized women with CC facing reproductive discrimination from providers and health systems due to their intersecting identities.
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For people with CC who do get pregnant and use teratogenic medications or have health concerns during pregnancy, access to abortion is threatened in many regions across the United States.
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Anecdotally, since the repeal of Roe v. Wade , people of child‐bearing age report being denied access to first‐line treatments for their CC due to concerns about abortion potential should they become pregnant.
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With abortion access significantly restricted, it is critical to engage proactively with all people regarding reproductive intentions, especially those who may have high risk of poor outcomes.
In a fragmented health system, managing even a single CC can be challenging, and many women manage two or more.
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Socioeconomic barriers are common,
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and risks for comorbid mental health conditions are high among those with a primarily physical CC diagnosis.
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Determining how to support this important population requires collaboration from multiple sectors.
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Improving and stabilizing CC prior to pregnancy can help protect people during this time period and beyond. Ensuring access to desired contraception for those who do not desire pregnancy is also critical.
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These are complex tasks and despite efforts to prioritize integrated and patient‐centered care, women and birthing persons with CC have not benefitted fully from these efforts.
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With regard to vocabulary, throughout this paper we try to use inclusive language toward people with uteruses who may become pregnant and not identify with the word “woman;” however, some of the studies we draw upon use binary language, and we are thus limited in how we incorporate other literature. We also use the term “system actor” to indicate those who can affect change for certain aspects of this complex problem, as opposed to the term stakeholder.
The health system is complex, particularly for women and birthing people with CC. Patients often see multiple providers, face additional barriers to care due to detrimental effects of CC and comorbidities, and experience stigma and exclusion related to their RH. Because coordination across system actors is needed to create change, insight from multiple groups is necessary to build, remake, and strengthen systems that constrain or promote excellent RH care. Gaining traction requires cross‐system discussion including development of a shared vocabulary and appreciation of the problem that is bigger than any individual's “worldview” (e.g., how they see the problem based on their position in it, incentives, goals, values, data, experiences). Innovative methods are needed to draw out and synthesize the expertise of groups and individuals directly involved in caring, advocating, and paying for the care of this population to understand and identify changes needed to improve outcomes for women, birthing people, children, and families.
Recognizing that complex problems require complexity‐aware approaches,
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we implemented a qualitative multilevel study to elicit and triangulate insights from experts in six different roles using a systems thinking framework. We had three objectives: (a) characterize the necessary system actors who need to support change, (b) use the iceberg systems thinking framework
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to document how the problem manifests (what it looks like “above the waterline”) and describe three categories of pain points contributing to these problem manifestations “below the waterline,” and (c) generate a list of action themes and ideas that respond to these pain points, noting which system actors need to work on each to improve care for people at the intersection of CC and RH.
Supplementary Material
Appendix S1. Supporting Information.
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