Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers

ABSTRACT

Background

Women with intellectual disabilities experience disparities in perinatal outcomes and unmet needs in perinatal care. Many women with intellectual disabilities receive support from family caregivers, including accompaniment to healthcare visits. This qualitative study explores the experiences of obstetric care clinicians navigating perinatal care with family caregivers of women with intellectual disabilities.

Methods

Transcripts from interviews (n = 9) and a focus group (n = 8) with 17 obstetric care clinicians were analyzed using a thematic analysis approach.

Results

Four major themes emerged: (1) determining intellectual disability and guardianship status; (2) decision‐making; (3) navigating ethical, legal, relational, and clinical challenges; (4) caregivers as an integral part of perinatal care.

Conclusions

Family caregiver involvement in perinatal care of women with intellectual disabilities has benefits but can also present challenges for obstetric care clinicians. Clinicians need guidance on how to appropriately manage perinatal care of women with intellectual disabilities.

Lay Summary

• Clinicians were often unaware of a patient's intellectual disability before the appointment and were unsure how to assess guardianship or decision‐making authority once the intellectual disability was identified.

• Clinicians often had concerns about a patient's ability to make independent decisions and might make assumptions about patient decision‐making capacity when processes were lacking. Sometimes clinicians made decisions for their patients with intellectual disability. In some cases, they deferred to caregivers, who might take charge even when their legal authority was uncertain

• Clinicians faced tense situations, from minor care‐compliance issues like medication adherence to more significant concerns affecting a woman's health, autonomy, or reproductive rights. Disagreements between patients and caregivers created challenges, and some clinicians reported advocating for the patient's wishes over the caregiver's wishes.

• Clinicians recognized that women with intellectual disabilities often have a caregiver or support person present at appointments, playing a more involved role than support people for those without disabilities. Most participants saw these caregivers as essential to perinatal care, assisting with pregnancy testing and education between visits.

1. Background

While ever‐increasing numbers of women with disabilities are choosing pregnancy and parenthood (Brown et al. 2020; Horner‐Johnson 2019; Horner‐Johnson et al. 2016; Servais 2006), they experience significant barriers to perinatal care and services compared to women without disabilities. There is substantial documentation of the challenges women with intellectual disabilities face in accessing perinatal care (Abells et al. 2016; Greenwood and Wilkinson 2013; Hoglund and Larsson 2013; Llewellyn 2012; Malouf et al. 2017; Mayes et al. 2006; Potvin et al. 2019; Walsh‐Gallagher et al. 2012; Xie and Gemmill 2018). Additionally, numerous studies have shown significant differences in pregnancy outcomes and complications for this population compared to the general obstetric population, including higher rates of preterm birth, low birth weight, infant mortality, and severe maternal morbidity and mortality (Akobirshoev et al. 2017; Brown 2021; Brown et al. 2016, 2017; Clements et al. 2020; Hoglund et al. 2012; Mitra et al. 2015, 2018, 2019, 2021; Mueller et al. 2019; Parish et al. 2015; Signore et al. 2020).

Research examining clinician perspectives in providing perinatal care specifically has identified numerous barriers to providing such care for women with intellectual disabilities, including lack of adequate training, communication challenges, time constraints, lack of established care guidelines and protocols, and a dearth of available support and information accessible to women with intellectual disabilities (Agaronnik et al. 2020; Amir et al. 2022; Castell and Stenfert Kroese 2016; Hoglund and Larsson 2013; Homeyard and Patelarou 2018; Iezzoni et al. 2021; McGarry et al. 2016; Smith et al. 2023; Taouk et al. 2018; Walsh‐Gallagher et al. 2013; Wilkinson et al. 2013). Moreover, many clinicians report uncertainty about how to determine whether an individual identifies as having an intellectual disability, discern her decision‐making capacity, and determine whether the family caregiver who accompanies her acts in the role of her family caregiver or legal guardian, with the ability to make treatment decisions in consultation with the provider (Castell and Stenfert Kroese 2016; Höglund et al., Hoglund and Larsson 2013; Homeyard and Patelarou 2018; Taouk et al. 2018; Smith et al. 2023). Given the complexity and diversity of people with intellectual disabilities in healthcare settings, knowledge of guardianship status is necessary.

Many adults with intellectual disabilities rely on family caregivers for support in medical decision‐making and care coordination (Braddock et al. 2011; 2013). Unfortunately, research shows that clinicians caring for women with intellectual disabilities often defer decisions about their care to family caregiver wishes and judgments instead of prioritising patient autonomy (Agaronnik et al. 2020; Earle et al. 2012; Powell et al. 2020; Taouk et al. 2018). This deference can result from clinical inexperience with this population and may contribute to the delivery of inequitable and inaccessible care (Fisher et al. 2020). Regarding sexual and reproductive health specifically, family caregivers sometimes collaborate with providers to make contraception decisions for women with intellectual disabilities without their knowledge or consent, including forced sterilisation (Chou and Lu 2011; McCarthy 2011; Powell et al. 2020; Roy 2010; Rushbrooke et al. 2014; Tilley et al. 2012; Walsh et al. 2001). These practices and assumptions about the decision‐making power of individuals with intellectual disabilities lead to paternalistic approaches that overlook their reproductive rights and preferences.

Recent scholarship has paid increased attention to reproductive justice of people with disabilities, which is especially relevant given the historical context of eugenics and oppression of their reproductive rights, including those with intellectual disabilities (Mercerat et al. 2025; Pacheco et al. 2024; Powell 2024). Lenses of disability justice and reproductive justice can support efforts to examine disparities and disabled people's experiences as well as to address barriers at a systemic level (DiMatteo et al. 2022; Fletcher et al. 2023).

Given the need to improve pregnancy care, experiences, and outcomes for women with intellectual disabilities, it is important to examine provider experiences caring for this population. Specifically, analysis of the dynamics between clinicians, family caregivers, and patients with intellectual disabilities during perinatal care is crucial considering the history of eugenics and lack of autonomy for women with intellectual disabilities regarding reproductive rights, along with contemporary legal decisions affecting marginalised groups.

This qualitative study analysed data from interviews and a focus group with obstetric care clinicians. The aim was to understand clinician perspectives on interacting and coordinating with family caregivers of patients with intellectual disabilities during the perinatal period. Key topics included the challenges clinicians face navigating care with caregiver involvement, how caregivers may facilitate quality care, and ways to better support clinicians managing this triadic relationship to improve care for women with intellectual disabilities.

2. Methods

This study was part of a larger mixed‐methods study aiming to improve pregnancy experiences and outcomes for women with intellectual disabilities. Data collection included individual interviews (n = 9) and one focus group (n = 8) conducted with obstetric care clinicians between June 2017 and June 2018. The researchers' Institutional Review Board approved this study protocol.

2.1. Data Collection

Recruitment strategies included outreach to professional networks, such as the American College of Obstetricians and Gynaecologists (ACOG), community‐based organisations and medical facilities that serve people with disabilities, and snowball sampling. The semi‐structured interview and focus group guides were based on recurring themes in the existing literature, a similar guide from a previous study (Mitra et al. 2017), initial findings from interviews with women with intellectual and developmental disabilities (Smith et al. 2024), and quantitative findings from research on pregnancy outcomes and disparities among women with intellectual and developmental disabilities compared to women without intellectual and developmental disabilities (Mitra et al. 2015; Parish et al. 2015). The guide consisted of questions covering areas such as clinician experiences with women with intellectual disabilities, perceived disparities and barriers, suggestions for clinicians, and recommendations for guidelines and policies. An obstetrician‐gynaecologist with active practice experience conducted all individual interviews and facilitated the single focus group.

Clinicians in the US who were currently practicing obstetrics or had retired within the previous year were eligible to participate in the study if they had completed residency training and reported experience providing perinatal care to women with intellectual disabilities. Individual interviews (n = 9) were conducted over the phone; the focus group (n = 8) was conducted in person at an American College of Obstetricians and Gynaecologists (ACOG) annual clinical and scientific meeting, for a total sample of 17 participants. The interviews and focus group were audio‐recorded and professionally transcribed. Clinicians were offered a $150 gift card in thanks for their participation.

2.2. Analysis

Following a thematic analysis approach (Clarke et al. 2015), the study investigators began by reviewing several transcripts, followed by a group discussion to identify concepts emerging from the data using a mixture of descriptive, in vivo, and focused techniques. As additional transcripts were discussed, the concepts were converted to codes documented in a codebook. Two researchers applied codes across all transcripts. The coders met repeatedly to review coding and discuss any areas of discrepancy until an agreement was reached, discussing with investigators as needed and updating the codebook accordingly. The researchers then conducted a second round of analysis for larger themes and relationships between them, specifically relating to caregiver involvement in perinatal care. The research team used Dedoose software to manage and code qualitative data (Dedoose Version 8.3.17 2020).

3. Results

3.1. Participant Characteristics

A majority of participants were aged 40–59 years (n = 10), white (n = 14), non‐Hispanic (n = 16), and women (n = 12). Total years in practice (excluding residency) ranged from a few months to over 30 years, with an average of 15 years. Most clinician participants were obstetricians/gynaecologists (n = 13), three were subspecialists in maternal‐fetal medicine/perinatology, and one was a perinatal nurse. Practice settings included teaching hospitals (n = 8), private practices (n = 6), and community hospitals or clinics (n = 3). For greater details, the characteristics of the participants are shown in Table 1.

TABLE 1.

Participant characteristics of obstetric clinicians, n = 17.

Characteristic	n	%
Type of participation
Individual phone interview	9	53
In‐person focus group	8	47
Age (mean = 50.1; range = 31–87)
31–40	4	24
41–50	6	35
51–60	4	24
60+	3	18
Race/ethnicity
Non‐Latinx, White	13	76
Latinx	1	6
Other	3	18
Years of post‐residency experience (mean = 14.5; range ≤ 1 year–30+)
5 years or less	4	24
6–10	3	18
11–15	1	6
16–20	4	24
21–25	0	—
26+	4	24
Unknown	1	6
Specialty
Obstetrics/gynaecology	13	76
Maternal‐fetal medicine (sub‐specialty)	3	18
Perinatal nurse	1	6
Practice setting
Academic medical center	8	47
Community hospital or clinic	3	18
Private practice	6	35

3.2. Overall Themes

Analysis revealed four major themes related to clinician interactions with family caregivers of women with intellectual disabilities, including: (1) determining intellectual disability and guardianship status; (2) decision‐making; (3) navigating challenges; and (4) caregivers as an integral part of perinatal care.

3.2.1. Determining Intellectual Disability Status and Guardianship Status

A key topic of discussion among clinician participants was the lack of clear guidelines for determining if a patient had an intellectual or developmental disability. Often, clinicians were unaware of the patient's intellectual disability status prior to the appointment. Instead, awareness typically arose through subsequent interactions with the woman herself and/or her caregiver. As one clinician described, “[The woman] would keep asking the same question over and over. And we'd answer it, and a couple minutes later, they would ask the same question. (ID4)” While one participant could usually identify intellectual disability based on the referring facility, most clinician participants determined or suspected the diagnosis after the initial appointment. Overall, participants indicated that having prior knowledge of a patient's intellectual disability status would have been helpful.

Study participants also expressed uncertainty around assessing the guardianship or decision‐making authority of family caregivers once a patient's potential intellectual disability was identified. While some women may have a support person at appointments regardless of disability status, participants noted caregivers often play a larger role for those with intellectual disabilities versus support people for patients without disabilities. However, the exact caregiver relationship and responsibilities were not always clear. As one participant noted, “[T]he inability of the patient to advocate for herself, that leads to a discomfort on the part of the provider… caring for [these] women who cannot advocate for themselves and not making decisions for themselves, we don't know whether or not laws have been violated and how we can proceed safely supporting them to the best of our ability. (ID8)” This lack of clarity sometimes led clinicians to make assumptions about the woman's capacity to participate in her care. Determining the caregiver's guardianship status and role was an additional challenge facing participants.

3.2.2. Decision‐Making

Most participants expressed concerns regarding a patient's capacity for independent decision‐making, as one stated, “[E]verybody has got somebody who is going to make decisions for them. (FG8)” In practice, clinicians either evaluated capacity themselves or consulted an ethics committee or colleague, as described: “…the ethics committee provides us with guidance on the appropriate way to counsel them on say continuing the pregnancy or not. Who has the right to agree to a termination or not to pursue a termination? Is the patient able to make that decision? Or can her legal guardian? (ID8).”

However, as noted in the previous theme, clinicians often lacked clarity on guardianship status, which often made decision‐making more complex. One clinician had a colleague assess decision‐making capacity: “You have [another professional] look at the cognitive abilities, and if … they have the ability to make the decisions on their own. (FG3)” Another suggested referring the patient for neuropsychological evaluation:

I think the neuropsych's role was more to give us a sense of accommodations that we needed to make and then more specifically and probably more formally particularly for consent purposes to identify what was optimal and best for the patient. To not take away her autonomy but also to make sure that we had consents and were on board with the family or whoever her guardian was, which is often the case actually. (ID1)

It was not clear what the guardianship status was in this example.

Lack of clarity about the patient's decision‐making capacity sometimes led to clinicians making decisions for patients, with one stating, “We would basically rely on our clinical judgment… because there was no other way to make a decision. (ID8)” The same participant also said, “I think the lack of advocacy, the lack of autonomy all of this leads to the providers making decisions. (ID8)” Sometimes, clinicians defer to caregivers for decision‐making, who may assert their authority even if the legal guardianship status is not known to the clinician: “…generally, I find that the moms take over all of those decisions. (FG1)”.

One participant described how a lack of clarity about who had the legal authority to make decisions made it difficult and complicated for clinicians and more stressful for the patient:

…how do you help the docs? Where do you go if it's not a parent, or it's not clear…? And who does have the say then when it comes to taking care of that daughter? It's very difficult, and sometimes you have to go through the court system, and a caseworker, and a judge. And it's hard on the whole pregnancy for [the woman with intellectual disability]. (FG6)

Clinicians may make assumptions about patient decision‐making capacity when processes are lacking, as one clinician presumed the authority of a woman's husband without confirmation, saying, “He is her husband and the person who probably can legally [make her decisions]. (FG1)” Another assumed patients with intellectual disabilities universally lack capacity: “If they don't have a parent to kind of tease out who is their person who's going to be giving them informed consent, ‘cause obviously they can't really most of the time make that decision’. (FG5)”

3.2.3. Navigating Ethical, Legal, Relational, and Clinical Challenges

Participants emphasised that family caregivers play a prominent role in decision‐making process during perinatal care regardless of whether the woman has a legal guardian. As one participant stated, “…there are a lot [of cases of women with intellectual disabilities] where…the caregiver, or a parent, or somebody else is making a decision. (FG4)” Clinician‐participants characterised encountering tense situations, ranging from relatively minor care‐compliance issues (i.e., medication compliance) to situations with significant ramifications for the woman's health, autonomy, or reproductive rights. The complexity of these situations was compounded when the legal guardianship status was unclear.

Care compliance challenges like medication adherence were noted as problematic: “One of the big problems is noncompliance with [patients with intellectual disabilities]. (FG4)” One participant described an example, in which a woman with intellectual disability relied on her caregiver to administer medications, but the caregiver did not comply:

And she's still anemic, and then I finally find out, you talk to the patient. ‘Oh, she never gave me those pills.’ [The caregiver responds] ‘Well, I think she gets constipated.’ What a mess! And then, how do I deal with that if they're not getting the care… (FG3)

Additionally, clinicians described tense and particularly challenging situations to navigate in which caregivers wanted to make decisions that conflicted with the express wishes of the patient with intellectual disability. These situations included medical decisions with respect to the mode of delivery (e.g., whether to have an elective caesarean delivery), reproductive rights, and the decision to parent (e.g., permanent sterilisation, pregnancy termination, adoption).

Some participants referred to the tension created in moments of disagreement between the woman and her caregiver. A few participants reported advocating for the patient's wishes rather than the caregiver's. One participant described a situation in which the caregiver wanted the woman to have a tubal ligation, but the woman did not want one:

[The caregiver] may want a C‐section [because] they want you to tie their tubes. But the patient doesn't want their tubes tied, so it really puts us at a disadvantage. And so you're trying to advocate for the patient, but the caregiver may have a different notion. (FG3)

The same participant described a scenario where a family caregiver advocated for an abortion against a woman's wishes. Participants agreed this conflict is challenging even if the woman's guardianship status is known:

[The caregivers] want her to terminate, and [the woman with intellectual disability] doesn't want to terminate, and so the first thing comes in is you, as a physician, you have to either get a lawyer, but what I'd like to know is who do you contact to make those decisions? (FG3).

Another participant recounted a scenario in which the parents of a woman with intellectual disability had opted to place the baby for adoption. However, the participant expressed concerns about the woman's ability to comprehend and cope with the situation:

I have had patients who are depressed because they know that baby's planned to be given up for adoption. So, they're going through this, and then they're going to lose that baby. And I don't know if they have sometimes the tools to handle and to process what that means. I've had a patient, she came when she was pregnant, she had her doll with her the whole time, her baby. But the whole discussion, she was with her parents. They had already had a couple who was going to adopt that child, and she didn't want to do it. (FG5)

One strategy espoused by several participants to address situations where they had a question about the woman with intellectual disability's decision‐making capacity or challenging situations with caregivers is to refer the woman to social services or for a psychological examination or examination by a colleague for a second opinion. One participant discussed, “Just getting as many resources as you can to get involved. Like, social work in particular in the outpatient setting. Psych in the outpatient setting I guess can be helpful but the social worker and just getting as many resources as you can to help them in that matter. (ID3)” Another described the need for guidance to help clinicians navigate difficult situations, “So I think if you could help the [obstetrician] to figure out who do they go to, who do they call. Is it the state? Is it a social worker? Is it a lawyer? Is it an advocacy service to help with those problems? (FG3)”.

3.2.4. Caregivers as an Integral Part of Perinatal Care

Participants consistently acknowledged that women with intellectual disabilities most often have a family caregiver or support person attend appointments who may play a more integral role compared to support people for those without disabilities. The majority viewed these caregivers as valuable to perinatal care. One participant stated that they always try to “enlist family and supports as allies (ID6)” by including them in care and relying on them to support the woman with intellectual disability and the care plan.

Suggestions for involving caregivers included having “as many people who are involved in the patient's care and decision‐making in the room always around like family members or caregivers to talk to them about the care so they're aware of it as well. So, just like having a lot of other people to try to be made aware of the plan. (ID3)”.

Another example was utilising family to help patients navigate pregnancy testing between visits. Another clinician said, “If there's sort of a consistent family member or support person that [the woman with intellectual disability] brings with them, I try to encourage them to come. It's obviously out of my hands entirely, but I think making that person feel welcome and a part of the process is important. (ID1)”.

Other roles were educating caregivers on “what to look out for (ID1)” in the patient's health and providing additional support during labor. As one described: “I try to involve the family in pain management, pushing, and other things where people might need a little bit more support. (ID1)”.

One participant also highlighted addressing the caregiver's well‐being:

And then I'd also like to have some way to address the caregiver to see if they need any help, whether it's just a question you say. Do I need to help you? Is there anything else that I need to do for your sake, to provide care for her? (FG3)

The need to potentially “spend more time coordinating things with their caregivers (ID5)” was also noted.

3.3. Focus Group versus Individual Interviews

For the most part, findings were consistent across both the focus group and individual interviews. For instance, the barriers and challenges discussed were similar across both methodologies. A lack of discussion or acknowledgement of the range of functioning of people with intellectual disabilities, although consistent across interviews and focus groups, was more pronounced in the focus group. Focus group participants became very focused on prevention of pregnancy and patients with intellectual disabilities' lack of capacity to parent, to the extent that the moderator redirected discussion by asking participants to assume a patient comes to them already pregnant. Other than the extremity of assumptions about lack of decision‐making capacity and lack of acknowledgement of the range of intellectual disability among focus group discussion, findings were consistent.

4. Discussion

This qualitative study examined obstetric care clinicians' experiences in providing care to pregnant women with intellectual disabilities in collaboration with family caregivers. Participants reported feeling ill‐prepared to care for women with intellectual disabilities, attributing it to inadequate training and exposure. This lack of preparation often led to guesswork and assumptions about the patient's decision‐making ability. Uncertainty around the caregiver's precise relationship with the patient, legal authority, and care responsibilities was common. This study also revealed the significant role that caregivers played in the perinatal care of women with intellectual disabilities, though their presence potentially undermines the woman's autonomy. Care can become complicated or compromised when the woman with intellectual disability and her caregiver disagree about the goals of perinatal care and treatment decisions.

These findings have key implications for clinical decision‐making and coordination with caregivers. Most critically, they highlight an urgent need to better guide and assist clinicians in navigating caregiver dynamics to seek and respect the needs and preferences of women with intellectual disabilities. Additional training and protocols are warranted to clarify caregiver roles, reinforce patient‐centered care approaches, and optimize support for patients and clinicians alike.

Many women with intellectual and developmental disabilities have family members or a guardian who are involved in their lives, and caregivers can be a vital source of support throughout pregnancy (Powell et al. 2020; Rosenthal et al. 2022). However, caregivers may also restrict self‐determination (Cepko 1993; From Carrie Buck to Britney Spears 2021; Powell et al. 2024). Our findings reflect this dichotomy. Participants noted both the benefits of including caregivers as an integral part of the care team as well as challenges when caregiver wishes conflict with the woman's. The results indicate that family caregivers are often integral to care and that clinicians' efforts to engage them, communicate with them effectively, and support them in tangible ways must be prioritized. Nonetheless, clinicians must remain cognizant of the impact that family caregivers have on the individual with intellectual disability, as well as the challenges often associated with addressing the complex needs and behaviors of a person with intellectual disability—particularly those that might not be readily apparent. Attention must be paid to instances where clinicians and/or caregivers undermine autonomy and rights, as these can increase stress and risk unmet needs or foregone care.

The study's findings raise critical issues about how perinatal care decisions are made for women with intellectual disabilities. Many examples involved assumptions about decision‐making capacity and the rights of someone else to make decisions for women with intellectual disabilities. For instance, the belief that a woman's spouse has the legal right to make decisions for her is inaccurate and problematic. Other research has reported that women with intellectual and developmental disabilities are frequently excluded from decisions (Earle et al. 2012; Keywood and Flynn 2003, 2009; Ledger et al. 2016; Powell et al. 2020; Smith et al. 2024, 2025). The finding here that clinicians feel entitled to decide or make assumptions about women's abilities and rights could perpetuate this.

While some participants suggested women with intellectual disabilities uniformly lack decision‐making capacity, data do not support this position (Keywood and Flynn 2003, 2009). People with intellectual disabilities encompass a broad range of abilities, and many are capable of making their own decisions. Moreover, decision‐making seldom occurs in a single event, but unfolds gradually requiring information, support, and resources (Fisher et al. 2020). Also, decisions are often only questioned when the answer is incongruent with what the caregiver thinks should happen. There may be instances where those with intellectual disabilities participate in their own health care more readily than others, but the notion that capacity and autonomy are inherently limited is inaccurate, paternalistic, and potentially harmful (Autonomy, Decision‐Making Supports, and Guardianship 2016). The interactions between patients with intellectual disabilities, their caregivers, and clinicians may complicate perinatal care decision‐making, which can pose unique challenges (Shea et al. 2024). These challenges, including both a higher risk for adverse clinical outcomes and structural barriers to care, include ethical considerations that prioritise the patient's autonomy and appropriate participation in care decisions. This study's findings, consistent with other research, suggest that perinatal care decision‐making for women with intellectual disabilities warrants further study, clinician training, guidance, including the use of supported decision‐making tools (American College of Obstetricians and Gynecologists 2025; MacLeod 2023).

Another variable that may impact care, decision‐making, and dynamics with caregivers in perinatal care is the woman with intellectual disability's experience of trauma or abuse. Notably, this was not discussed by participants in the context of managing care with caregiver involvement in this study. Given the increased risk for trauma and abuse among people with intellectual disability (Houck and Dracobly 2022), further exploration of how caregiver interactions may be impacted and guidance for clinicians is an important area to be explored.

Several participants discussed referring women with intellectual disabilities to social services to manage difficult situations. While clinicians may believe this is a step that will ultimately help the woman with intellectual disability, social service providers may not be knowledgeable about intellectual disabilities; they may harbor biases or negative attitudes about women with intellectual disabilities having children, and may lack knowledge and expertise about working with people with intellectual disabilities. While some women with intellectual disabilities report their social workers provided essential support (Rosenthal et al. 2022), other researchers have found women report stressful and highly negative interactions with social services (Xie and Gemmill 2018), and some women with intellectual disabilities report fearing child removal and custody termination (Mayes et al. 2006; Mayes and Llewellyn 2009; Potvin et al. 2019; Ptacek et al. 2023; Xie and Gemmill 2018). These fears are well‐founded. Parents with intellectual disabilities are significantly more likely to be involved with the child welfare system, have their children removed from their care, and have their parental rights terminated compared to parents without intellectual disabilities (Callow et al. 2017; International Association for the Scientific Study of Intellectual Disabilities, Special Interest Research Group on Parents and Parenting with Intellectual Disabilities 2008; LaLiberte et al. 2017; Llewellyn et al. 2003; McConnell et al. 2011). Clinicians should thus be aware of potential implications before referring to social services. Providing resources like disability support services, peer groups, or parenting classes could better assist women with intellectual disabilities.

Participants stressed the need for guidance or training around care coordination with caregivers, including determining decision‐making authority and communicating effectively with both parties. Regardless of guardianship status, women with intellectual disabilities must be included respectfully in their own care to support autonomy and patient‐centered principles like shared decision‐making (Disability Voices United 2020; Person Centered Planning 2024), person‐centered planning (Claes et al. 2010), and trauma‐informed approaches (Delap 2021; Truesdale et al. 2019). Guidelines are also needed for situations where caregiver wishes conflict with the patient's wishes, to empower clinicians to advocate for patient preferences. Example language for difficult conversations would be helpful (Amir et al. 2022; Smith et al. 2023).

It seems unlikely that guidelines related to determining guardianship status will fully address the concerns raised by participants. However, failing to acknowledge the risks and liabilities a clinician may experience in providing perinatal care to an individual with intellectual disability may increase barriers to care. Evidence from this study warrants protocols explicitly addressing these situations, although alone these are unlikely to radically transform care delivery, at least in the short term (Beauchemin et al. 2019). Meeting the intricate, variable, and time‐intensive needs of many people with intellectual disabilities proves challenging amidst demanding clinical care. Despite the likelihood of encountering those with intellectual disabilities, specialized training and education for providers remain scarce in the US (Amir et al. 2022; Auberry 2018; Smeltzer et al. 2015). Further research, advocacy, and policy efforts are critically needed to better support both people with intellectual disabilities accessing perinatal care as well as the clinicians striving to provide patient‐centered care to this population.

Although the data for this study were collected in 2017–2018 (approximately 7–8 years prior to the writing of the manuscript), more recent research continues to document similar barriers experienced by obstetric clinicians providing care to women with intellectual disabilities and challenges faced by women with intellectual disabilities themselves in accessing equitable and informed perinatal care (Agaronnik et al. 2020; Iezzoni et al. 2021; Iezzoni and Mitra 2025), suggesting that the barriers identified in our study remain highly relevant. Obstetric clinicians consistently report limited training related to perinatal care for women with intellectual disabilities and express a strong desire for resources and guidance, particularly around issues such as guardianship and communication strategies for patients with intellectual disabilities (Iezzoni and Mitra 2025). Moreover, perinatal health disparities persist (Shea et al. 2024).

4.1. Limitations

This study had a small sample size of 17 clinicians, lacking in racial and ethnic diversity: 14 participants were white and 16 were non‐Hispanic. Thus, the perspectives and experiences of clinicians with other racial and ethnic identities may not be adequately captured. The findings represent participants' perceptions without external validation through clinical observation or other data. Practice settings like rural clinics were not included; therefore, potential barriers unique to those environments remain unevaluated. All participants claimed prior experience caring for pregnant people with intellectual disabilities; providers without such exposure could face more pronounced or altogether different challenges. Finally, the results may be influenced by biases including selection bias, recall bias, confirmation bias, and social desirability bias, as they are inherent in this type of qualitative study. Further large‐scale research is critical for producing more widely transferable results.

5. Conclusion

Caring for pregnant women with intellectual disabilities requires a nuanced and informed understanding of the individual, including careful consideration of the interrelationships between patient, caregiver(s), and care experiences and outcomes. The findings from this study underscore an urgent need for guidelines, training, and tools to better assist clinicians providing perinatal care to women with intellectual disabilities alongside family caregivers, particularly in complex situations involving patient‐caregiver preference conflicts. Further research specifically examining medical decision‐making dynamics is critical. Family caregivers and guardians can provide vital supports when included appropriately with patient consent, but inappropriate involvement risks heightened unmet needs and exacerbating existing inequities. As people with intellectual disabilities increasingly choose pregnancy, they deserve accessible, high‐quality, bias‐free care. Their providers require training and support to deliver patient‐centered care that prioritizes the autonomy and preferences of people with intellectual disabilities.

Author Contributions

Lauren D. Smith: writing – original draft (lead); conception and design; acquisition of data; analysis and interpretation of data. Anne Valentine: revising critically for important intellectual content; analysis and interpretation of data. Tiffany A. Moore Simas: revising critically for important intellectual content; analysis and interpretation of data; acquisition of data. Susan L. Parish: conception and design; funding acquisition; revising critically for important intellectual content; analysis and interpretation of data. Robyn Powell: revising critically for important intellectual content; analysis and interpretation of data. Luanjiao Hu: revising critically for important intellectual content. Monika Mitra: conception and design; funding acquisition; revising critically for important intellectual content; analysis and interpretation of data.

Funding

Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R01HD082105 and by the National Institute on Disability, Independent Living, and Rehabilitation Research under Award Numbers 90DPHF0011 and 90DPHF0013. The content is solely the responsibility of the authors and does not represent the policy of NIH, NICHD, NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

Ethics Statement

This research was approved by the Brandeis University Institutional Review Board under protocol 15013.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1: Supporting Information.

Smith, L. D. , Valentine A., Moore Simas T. A., et al. 2026. “Enhancing Perinatal Care for Women With Intellectual Disabilities: Clinician Insights on Involving Family Caregivers.” Journal of Applied Research in Intellectual Disabilities 39, no. 1: e70194. 10.1111/jar.70194.

Data Availability Statement

The study data have not been made publicly available to ensure confidentiality of participant identities; even if transcripts are deidentified, it is possible that participants could be identified from information discussed in the interviews.