Clinician Perspectives on the Need for Training on Caring for Pregnant Women with Intellectual and Developmental Disabilities

Abstract

Background:

Women with intellectual and developmental disabilities (IDD) experience disparities in obstetric care access and quality, in addition to communication gaps with healthcare providers. Many obstetric providers are untrained and uneducated about critical aspects of providing care to persons with IDD.

Objective:

The study was conducted to describe obstetric clinicians’ training experiences related to providing obstetric care to women with IDD, to assess the perceived need for formalized training, and to identify recommendations for training content.

Methods:

This study involved qualitative individual interviews (n=9) and one focus group (n=8) with obstetric clinicians who self-reported experience caring for women with IDD during pregnancy. Descriptive coding and content analysis techniques were used to develop an iterative codebook related to education and training; codes were applied to the data. Coded data were analyzed for larger themes and relationships.

Results:

Analysis revealed three main themes: 1. Need for obstetric training and education: No participant reported receiving any training in caring for pregnant women with IDD. Participants expressed a need for formal education. 2. Recommendations for formal training: Participants noted the need for training during residency and beyond, and all healthcare staff should be included in training. 3. Training outcomes should increase knowledge, enhance attitudes, and develop practical skills related to care for pregnant women with IDD.

Conclusion:

Results indicate a need for systematic training efforts regarding obstetric care for women with IDD. Improved training and education may decrease health inequities and improve the quality of care, and thus pregnancy outcomes, for women with IDD.

Level of Evidence:

VI

Introduction:

Compared to the general population, people with intellectual and developmental disabilities (IDD) experience significant health inequities including reduced access to preventative care, higher rates of undiagnosed disorders, inadequate treatment, and early mortality from preventable causes ^{1, 2}. Health disparities have been routinely documented in obstetric outcomes for women with IDD ^3-7.

Historically, women with IDD were subjected to forced sterilization as part of eugenic practices in the United States ⁸. While eugenic practices are no longer formally endorsed by the medical community, evidence suggests that women with IDD experience disparities in contraception provision and sterilization ^{9, 10}. Additionally, they face significant stigma and discrimination surrounding pregnancy ^11-14. These disparities and stigmas are compounded by other factors including higher rates of poverty in this population and low socioeconomic attainment in this population which all contribute to inadequate sexual and reproductive healthcare ^{7, 15}. Although rates of pregnancy among women with disabilities are increasing ¹⁶, women with IDD are more likely to experience preterm deliveries, low birth weight infants, and stillbirths compared to the general population ^{3, 17, 18}. Additionally, women with IDD have elevated rates of postpartum emergency department visits and hospitalizations when compared their peers without IDD ^{4, 6, 19}. While studies demonstrating these disparities offer suggestions for improving care in this population, there have been no studies looking at interventions to reduce these disparities.

One important barrier to receipt of adequate and appropriate health care for people with IDD is the lack of appropriate training for healthcare professionals ^{20, 21}. Limited research on reproductive healthcare of women with IDD from provider perspectives have reported inadequate training for healthcare professionals but none of these are specific to pregnancy^{22, 23}. In pregnancy specific studies, healthcare providers have reported being unfamiliar with the needs of women with disabilities, as well as lacking confidence to treat these women ^{24, 25}. Though these studies focus on the experiences of healthcare professionals caring for pregnant women with physical disabilities and not with IDD. There is a paucity of data about the education of obstetric clinicians who care for women with IDD. The present study was conducted (1) to describe obstetric clinicians’ training experiences related to providing obstetric care to women with IDD, (2) to assess obstetric clinicians’ perceived need for formalized training, and (3) to identify recommendations for training content and dissemination.

Methods:

We conducted individual interviews (n=9) and one focus group (n=8) with obstetric clinicians about their experiences providing obstetric care to women with intellectual disabilities. This work was part of a larger mixed-methods examination of pregnancy outcomes among women with IDD. Interviews and the focus group were conducted between June 2017 and June 2018. All study procedures were approved by the second authors’ institutional review board. 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.

Data collection

Study investigators developed a semi-structured interview (Appendix A) and focus group guide based on existing literature, preliminary findings from interviews with women with intellectual disabilities, and quantitative findings on pregnancy outcomes and disparities. We recruited clinicians to participate in the study through myriad methods including contacts in the disability community, agencies and community-based organizations serving people with disabilities, internet searches for medical facilities serving people with disabilities, snowball sampling, and through the American College of Obstetricians and Gynecologists (ACOG).

Eligibility was restricted to clinicians who were currently practicing in the United States (or retired within one year), who completed residency in obstetrics and gynecology if physicians, and self-reported experience caring for women with intellectual disabilities during pregnancy. Clinicians answered several brief screening questions to confirm eligibility. Clinicians were invited to complete either an individual telephone interview or attend an in-person focus group at the 2018 ACOG annual clinical and scientific meeting. A practicing obstetrician-gynecologist (Ob/Gyn) conducted all interviews and the focus group. Interviews and the focus group were audio-recorded, transcribed by a professional transcription service, and verified for analysis.

Analysis

Using a content analysis approach ^{26, 27}, the study investigators began by reviewing several transcripts followed by group discussion to identify concepts emerging from the data using both inductive and deductive techniques. The concepts were converted to codes documented in a codebook (Appendix B) as additional transcripts were discussed. The codes were then iteratively expanded and collapsed before being grouped into categories or themes. Two members of the research team systematically coded all the data based on the codebook. The two coders discussed and resolved all questions or areas of discrepancy and jointly determined when saturation of themes was achieved. This paper reports themes related to obstetric clinicians’ training and education for caring for women with IDD. The researchers used the Dedoose web-based qualitative analysis application to manage the analysis (Dedoose Version 8.0.35, 2018).

Results:

Participant Characteristics

In total, 17 clinicians participated in this research study via individual telephone interviews (n=9, 53%), or an in-person focus group (n=8, 47%). Among the 17 clinicians, most were between 40-59 years old (n=10, 59%), white (n=14, 82%), non-Hispanic (n=16, 94%), and women (n=12, 71%). Amount of clinical experience (years in practice, excluding residency) ranged from a few months to over 30 years (mean= 15 years, median= 15 years). All participants were currently practicing, except one who had retired within one year. Almost all (n= 13, 76%) were Ob/Gyn generalists, three were subspecialists in maternal fetal medicine/perinatology, and one was a perinatal nurse. Practice settings varied and included academic medical centers (n=8, 47%), community hospitals or clinics (n=3, 18%), and private practices (n=6, 35%). However, some participants discussed experiences from practice settings in which they previously worked.

Overall Themes

Analysis revealed three main themes related to education and training for obstetric clinicians who care for women with IDD: (1) need for obstetric training including the clinician participants’ limited training experiences as a barrier to care for women with IDD; (2) recommendations for how to disseminate formal training; and (3) desired educational outcomes of training.

(1). Need for Obstetric Education and Training

All participants described a lack of education and training related to the obstetric care of women with IDD. While several (n=2, 12%) participants recalled a day-long disability training during their schooling or an hour-long lecture on disability, these experiences were brief, and none were specific to pregnancy. As one participant noted, “We had a single day in nursing school where we had sort of a disability training…nothing more formal than that…” Participants reported on-the-job training as their primary source of training and several mentioned doing their own reading on the topic.

Participants felt that this lack of formal training leads to worse care for women with IDD. “Since there's no official training that happens in residency, and there's probably a lecture on developmental delays in medical school, but not specifically for pregnancy. I think every doctor has the same ability to take care of these patients, and it's poor.”

The participants described a lack of confidence about the ability of clinicians to care for women with IDD and attributed this lack of confidence to the lack of training. As one participant noted, “We’re not trained. I’m not trained. I don’t feel confident.” Another stated “… I think a lot of people feel very ill-equipped to do all the right things even though we know how to deal with other populations.”

(2). Recommendations for Formal Training Dissemination

Nearly all (n=15, 88%) participants reported they were unaware of any perinatal care guidelines for women with IDD and thought such guidelines would be helpful.

The one nurse participant thought training should begin in nursing school however, physician participants thought training efforts should be focused on Ob/Gyn residents. As noted by one participant, “There needs to be better resident training for it or perhaps an option of do you want to be trained specifically for women with intellectual disabilities”. Another participant suggested including the topic as part of the Council on Resident Education in Obstetrics and Gynecology (CREOG) yearly written board exam. “You can make it part of residency training. You could make CREOG questions…when people know that it’s part of the CREOG exam, they usually get smart on their practice bulletins.”

For practicing physicians, participants had many ideas for possible training methods, including online modules and webinars. The most common recommendation was to create practice guidelines and accessible materials to give to patients. “I think what would be helpful would be some sort of practice bulletin…– materials that we could give to patients, materials that we could give to clinicians that were simple.” Participants wanted strategies and language suggestions for approaching different obstetric topics with women with IDD. When asked about what these guidelines might include, one participant suggested “Maybe sample sentences or phrases that you could use for a patient to simplify things.” Participants also recommended wide dissemination of such clinical guidelines with the help of the American College of Obstetricians and Gynecologists (ACOG).

Participants observed there were also educational gaps among hospital staff and suggested training should include all healthcare staff working on the labor and delivery unit. When talking about a patient in labor one participant noted, “The hospital staff does not a lot of times know what to do with them. I always have to let them know to just do the same thing that you do with everybody else.”

(3). Desired Educational Outcomes of Training

Participant responses revealed the need for training to increase knowledge, enhance attitudes, and develop practical skills for caring for women with IDD.

(3a). Knowledge

All participants reported they do not have adequate knowledge on IDD and pregnancy to effectively care for patients. This lack of knowledge was noted across several topical areas as detailed below.

Identification of IDD status

Participants struggled to identify patients with disabilities who do not have a clear diagnosis. One participant noted “There are some people who I wonder, and those patients would go into my higher surveillance category.” Another participant said, “I find that I'm guessing a lot just when they come in with some type of developmental delay.”

Available services and supports

Participants noted the importance of clinician knowledge of available services and supports in their area of practice. One participant suggested finding outside resources is a critical step in caring for this population. “Figuring out what resources are even there. I think is the first step. Because there’s often a lot more than you realize that’s probably underutilized.”

Legal decision-making/guardianship status

Knowledge gaps were also apparent as participants displayed confusion about legal and consent issues that arise when caring for patients with IDD. “I think one of the most difficult issues I find is a legal issue sometimes with who is the decision maker, who is going to take care of the baby afterwards, because the patient might really want to take care of that baby. But it's a question if she's able to or not…”

Health disparities and outcomes

Nearly all participants (n=13, 76%) acknowledged the narrow margins of health for these patients and displayed an understanding of the complex interplay between disability and health. “Significant disparities in the outcomes with women with intellectual disabilities. I see it all the time. You see women who don’t keep their appointments because they have transportation difficulties…or they have difficulties navigating our Medicaid system…” Some participants noted a lack of evidence-based research on the topic and need for more studies addressing disparities in health for this population.

(3b). Attitudes

Participants reported some healthcare clinicians harbor negative attitudes towards patients with disabilities and training may help mitigate the barriers to care that emerge from these stigmatizing attitudes. “I think that’s been really well-established that doctors have a different idea about what a life worth living is compared to the general population. And we see this in obstetrics … I think doctors have this idea that people with disabilities shouldn’t be living. I’ll just be honest.”

Despite providing obstetric care for women with IDD and reporting the stigmatizing attitudes of their colleagues, half of the participants (n=8, 47%) themselves displayed negative attitudes regarding childbearing for women with IDD. One participant stated, “… I do think that we should be making the decisions about contraception for their own benefit…Because I don’t think they would be able to either handle going through a pregnancy, or the delivery, and then what's going to happen to the baby if they have no family.” Acknowledging the idea that women with IDD should not become pregnant is widespread, one participant suggested healthcare providers “… do some self-seeking and be really aware of their own biases… really understanding that [people with IDD] may have healthy sex lives… and that if they get pregnant… sometimes it’s unplanned, sometimes it’s not. But even if it is unplanned, it’s not – doesn’t necessarily mean that it’s the result of something bad…”

When approaching patients with IDD, participants suggested obstetric clinicians should be open-minded about why people with IDD want to become parents. “Treat them with respect just like you treat everyone else with respect as patients. Be someone who teaches women about their options, about their bodies, about what is going on, and what is to come. For me, it is just what I do all day every day anyway.”

(3c). Skills

While participants reported educating themselves via self-study and on-the-job experience, they all noted a lack of formal training for developing practical clinical skills when caring for women with IDD. Most notably, they reported experiencing challenges communicating effectively with their patients with IDD. While discussing barriers colleagues face, one participant stated, “They may feel like the patient may not understand what they are saying. If you need the patient to turn a certain position… if you need to do a cervical exam… I think it is just a small hurdle.”

Some participants also discussed how they adjusted their practice to create positive experiences for women with IDD. One participant suggested altering your body language to make the patient feel more comfortable. “…I sit down, and I lower my chair to lower than their height on their table…so it doesn’t appear like I’m being authoritative. Just to let them know that they’re in control…”. A different participant also referenced making the woman feel in control when discussing how she completes pelvic exams “I explain everything as I go along… I’m always letting the patient know exactly what is happening so that they can feel they have control.”

Discussion

Increasing numbers of women with IDD are choosing to become pregnant but there is robust evidence of significant and alarming disparities in obstetric outcomes. While these disparities may be accounted for by a combination of factors, one way to potentially address these persistent health inequities is through training for healthcare providers ^{20, 28-31}. Our findings indicate that inadequate knowledge, lack of confidence, and lack of guidelines may prevent clinicians from providing comprehensive obstetric care to women with IDD. Additionally, caregivers may harbor negative attitudes or stereotypes regarding sexual and reproductive health for women with IDD.

These findings highlight the gaps that exist for healthcare professionals to receive formal training in caring for women with IDD. The Accreditation Council for Graduate Medical Education (ACGME) indicates Ob/Gyn residents are expected to “demonstrate respect and responsiveness to a diverse patient population, including…disabilities” but didactic requirements in residency are nonexistent ³². Without clear requirements, clinicians may feel ill-prepared to care for women with IDD following completion of training and lack educational opportunities in this area as practicing clinicians. Previous studies examining the impact of education and early exposure to patients with disabilities have demonstrated increases in knowledge and improved confidence in the clinical setting ^{28, 33-36}. Additionally, research demonstrates that direct and positive exposure to people with disabilities increases positive attitudes and can help to lessen or alter negative biases toward them ^{30, 34, 37}. It should be noted that while most studies focus on medical students, training could enhance knowledge and attitudes among clinicians in training and practicing clinicians as well as other hospital and office personnel. While there are competing demands for curriculum space in medical education, training for the care of patients with disabilities can also have significance for wider population health. Disability-related education can increase skills and knowledge that are not only relevant to caring for people with IDD, but also for other populations, especially those that are disadvantaged or have complex health needs ²⁰.

In addition to formal training, the findings of our study suggests that the development of clinical practice guidelines that can be readily disseminated may assist clinicians in caring for this population. There exists Canadian clinical practice guidelines for primary care of adults with IDD and these guidelines include recommendations for care in pregnancy ³⁸. These guidelines recommend increased monitoring during pregnancy, addressing modifiable risk factors prior to or early in pregnancy, and engaging local resources that can support and educate mothers with IDD and their partners³⁸. These guidelines are consistent with participant recommendations in this study. Creation and wide dissemination of clinical practice guidelines that are specific to caring for pregnant women with IDD are critical to improving care and decreasing perinatal health inequities, in addition to formal training.

Lastly, these findings suggest a need that tools to support clinicians may be helpful when caring for women with IDD. Previous research cites poor communication as an impediment to the provision of high-quality health care ^39-42. While reports of communication challenges likely reflect clinicians’ lack of skill in effectively communicating with women with IDD, effective communication for patients with IDD is critical to ensuring their reproductive rights. Further, the ADA requires that healthcare providers “take appropriate steps to ensure that communications with individuals with disabilities are as effective as communication with others” ³⁹. Clinicians in this study reported wanting tools to augment their efforts including guidelines, sample language to use with patients, and written materials in an accessible format (i.e., easy-read). Clinical tools should also include resources that outline relevant language and terms to use and include checklists based on clinical practice guidelines.

Limitations

There are several limitations associated with this study that need to be considered in its interpretation. The sample lacks racial and ethnic diversity as well as diversity in the age of the participants. Clinicians were required to have experience caring for women with IDD in order to participate which may have limited our sample of clinicians as well as the diversity of the opinions and experiences collected. This study describes participant clinicians’ own perspectives and opinions about the need for education and training in caring for women with IDD and may not reflect the experiences of a broader population of clinicians. Additionally, one of our participants was a nurse and thus clinical training for this participant differs from other clinicians. As with all qualitative research, these data are subject to recall and social desirability biases. Future research is needed to look at educational interventions which may include simulations, online modules, or the development of clinical practice guidelines to assess the effect of these interventions on patient outcomes.