An evidence-based educational intervention aims to enhance confidence.
- ICU nurses caring for patients with intellectual developmental disabilities (IDD) frequently face challenges in pain assessment and communication, as standard tools and approaches may not effectively capture the unique needs of this population.
- Nurses find profound moments of fulfillment and connection in their work with patient with IDD, transcending routine care by fostering empathy, adaptability, and creative problem-solving.
- Enhanced training and organizational support are essential for improving care quality for patients with IDD, reducing nurse stress, and ensuring safe, equitable, and compassionate care within the ICU environment.
“I don’t understand the pushback. Advocating for those in need shouldn’t be this hard,” thought Grace*, an RN who cares for individuals with intellectual and developmental disabilities (IDD). “It would have been nice if we learned more about this in school.”
Grace’s patient, Hester, a 58-year-old woman with cerebral palsy and several co-morbidities, meets with an oncologist to have a small lump on her left breast evaluated. The oncologist openly muses about how difficult it will be to obtain a biopsy and how Hester likely won’t tolerate treatment, “even if it is cancer.” Grace takes a deep breath and informs the doctor of Hester’s resilience and how much support she has at home. “How can we know what Hester is capable of and how treatable the lump is if we don’t complete a standard work-up of the problem?” asks Grace.
Individuals with IDD face several challenges when accessing healthcare services. Although most nursing and medical schools offer little comprehensive education on IDD, many nurses working with these patients must clarify complex medical histories and address unique needs across all healthcare settings. In many cases, on-the-job training for these nurses lacks consistency and fails to provide targeted education on the complexities of the care needs of individuals with IDD.
The numbers and the need
Healthy People 2030 calls for the improved health and well-being of those with disabilities. The World Health Organization notes that 25% of the U.S. population lives with a disability; globally, the number is close to 1.3 billion (16% of the world’s population). Those with disabilities are less likely to obtain preventive healthcare and twice as likely as those without a disability to need acute care. Within preventive care, those with disabilities are less likely to receive routine check-ups, screenings, and vaccinations, which can lead to the exacerbation of underlying health conditions.
Nurse advocacy can help ensure that individuals with IDD receive the care and support they need and reduce disparities. Too frequently, however, healthcare systems, including nurses and physicians, are unprepared to meet the needs of the IDD population, resulting in higher rates of preventable conditions and death.
Building a foundation
We created an evidence-based intervention initiative after a conversation we had with the executive director (ED) of a community-based organization dedicated to supporting adults with IDD in a community living arrangement. While exploring the nursing dynamics and challenges within the agency, the director highlighted the presence of several new nurses and, in some instances, recent graduates on the current nursing team.
Balancing the dual responsibilities of providing advocacy for individuals with IDD while simultaneously navigating the learning curve on the job had proven challenging for many of these new clinical healthcare professionals. Consequently, both community providers and nurses voiced frustrations regarding the efficacy of communication, both sent and received. The director noted the need for additional training in how to skillfully advocate for individuals with IDD, not only for new graduate nurses but also for those with more experience.
Our intervention initiative included a 90-minute education session delivered through an interactive PowerPoint presentation for nine of the agency’s nurses. The session encompassed didactic education on the Fatal Five in the IDD population and the SBAR (Situation, Background, Assessment, Recommendation) communication technique. We also integrated role-play scenarios to build confidence and competence in advocating for individuals with IDD, which encouraged dialogue and story-sharing.
Fatal Five
We identified the Fatal Five as a gap in knowledge. The Fatal Five concept appears in populations such as geriatrics, but it’s not commonly recognized within the IDD community, leaving caregivers unfamiliar with the warning signs and symptoms.
The Fatal Five refers to a set of five prevalent conditions (aspiration, constipation, dehydration, seizures, and sepsis), which, while largely preventable, have a disproportionate impact on individuals with IDD and can contribute to increased morbidity and mortality. The bodies of many individuals with IDD can compensate for an issue or condition before observable symptoms emerge; however, when symptoms do surface, they may appear differently than in the general population.
Aspiration. Curtis and colleagues and Izumi and colleagues note that silent aspiration, secondary to dysphagia, is common in patients with IDD. Aspiration can result in infection, most commonly pneumonia, which may present as a low-grade fever, the only indication that aspiration has occurred. Medications frequently prescribed to patients with IDD (such as atypical antipsychotics, seizure medications, and benzodiazepines or muscle relaxants) have long-term side effects that increase the likelihood of developing dysphagia and the need for a modified diet to prevent aspiration.
Constipation. In patients with IDD, constipation sometimes presents as maladaptive behaviors, such as self-injury or lashing out. Constipation also may be diagnosed during an assessment for pneumonia or other respiratory illness; the patient experiences shortness of breath as the stool pushes the diaphragm higher into the chest.
Dehydration. Dehydration can prove difficult to identify. Frequently, caregivers don’t consider it because the individual has been drinking adequately or has stayed inside on a hot day.
Seizure disorders. Many individuals with IDD have seizure disorders as a result of traumatic or anoxic brain injury, genetic conditions, or overstressed body systems and age.
Sepsis. In individuals with IDD, sepsis can present with hypothermia as the only symptom for a time, followed by hypotension and loss of consciousness or altered mental status. In patients with IDD, sepsis can advance quickly and prove fatal. (See Sharing stories.)
Sharing stories
Every intellectual and developmental disability nurse can share remarkable stories of individuals whose health took an apparent nosedive with little to no warning. These stories frequently result in the patient being admitted to intensive care and sometimes dying.
One story shared at the didactic educational session detailed a resident in a community living arrangement who endured a weeklong hospital stay after a diagnosis of dehydration and acute kidney injury. The resident, seemingly at baseline at 9:00 am when vital signs were taken, was difficult to rouse, atonic, and hypothermic 2 hours later. The individual was rushed to the hospital and diagnosed with dehydration and a resulting kidney injury. Staff reported no previous change in intake, so the diagnoses came as a surprise.
Another individual required admission for 5 days with a diagnosis of constipation. This resident was sent to the emergency department via ambulance after staff reports of respiratory distress. He reportedly stood abruptly from the dinner table and stated clearly that he did not feel well but couldn’t elaborate. His temperature was 100.2° F, respiration rate labored at 22 breaths per minute, blood pressure and heart rate elevated, and his SpO2 was 89%. At the hospital, a head computed tomography scan and chest x-ray were clear, but the kidney, ureter, and bladder scan revealed extensive hard stool throughout the colon. The amount of stool in his colon made it difficult for him to fully expand his diaphragm, resulting in respiratory distress and new oxygen dependence.
SBAR
The transfer of critical information requires clear and concise communication among healthcare providers. The SBAR technique, adopted by many high-reliability organizations, offers a structured framework to enhance communication among IDD healthcare clinicians and providers. The SBAR tool is widely acknowledged for its capacity to foster a culture of safety, enhance information clarity, and promote cohesion among care teams.
In IDD nursing, clinicians can use the tool to succinctly summarize a health-related scenario in a way that healthcare providers can recognize and respond to: describe the situation as a clear problem statement, provide concise background information, share a clinical assessment (and clinical judgment if applicable), and recommend an action or advice.
Role-play
Role-play scenarios offer a novel and highly effective approach to engage students and ensure learning. Through role-play, active learning complements information sharing and allows for customization of the experience to the learner or group. In our evidence-based intervention initiative, we grounded role-play scenarios in IDD case studies. Presenters played the role of medical provider, while nurse participants practiced their advocacy skills in a safe setting.
Assessing knowledge and confidence
The intended audience for this initiative included RNs employed in a New England-based nonprofit organization specializing in supporting adults with IDD living in the community. The participants had varying levels of experience, ranging from recent nursing graduates with only a few months of exposure within the IDD field to seasoned nurses with several years of IDD practice. Regardless of experience, all of the participants shared a common desire for more education and training to enhance their ability to advocate more effectively for the population they care for.
To assess the effectiveness of the educational intervention, participants completed pre- and post-surveys with 12 items. The surveys used a five-point Likert scale to measure changes in participants’ confidence and knowledge and capture the impact of the educational session on their advocacy skills and competence.
Encouraging outcomes
The outcomes of the evidence-based intervention initiative revealed several developments and insights. For example, survey question 12, which assessed nurse comfort with using the SBAR tool for advocacy, demonstrated the most noteworthy improvement. The level of agreement among participants increased by 24.4%. This response indicated that the intervention effectively enhanced the nurses’ confidence and proficiency when using this communication tool, which is crucial to advocating for those with IDD. (See Positive results.)
Positive results
Participants in the evidence-based education session rated the following statements on a five-point Likert scale.
- Intellectual and developmental disability (IDD) staff require special training to advocate for those that they support.
- I am happy with my level of education/training regarding providing care for those with IDD.
- I have received enough training in IDD nursing.
- I require further/ongoing education to better support the health and safety of those with IDD.
- I am comfortable providing education to other healthcare providers on the complex health needs of those individuals with IDD that I support.
- I am comfortable providing education to IDD individuals and their families on their complex health needs.
- I advocate for those with IDD regularly.
- I am knowledgeable in how to advocate for those with IDD at their medical appointments.
- I am skilled at advocating for those I support when I feel a healthcare provider is not understanding the medical needs of someone with IDD.
- I am confident in my ability to advocate for individuals with IDD in acute care settings.
- The SBAR tool is an excellent way to communicate with healthcare providers.
- I am comfortable utilizing the SBAR communication tool to advocate for those that I support.
In addition, the initiative garnered positive feedback from the participants. All nine nurses reported the educational intervention as a highly positive experience. This feedback reflects the initiative’s success and underscores the importance of evidence-based education to enhance nursing competence and advocacy skills related to IDD.
The nurses also expressed interest in enhancing their knowledge and confidence. They requested additional education to continue building on the progress made during the intervention. This eagerness for ongoing learning demonstrated the intervention’s effectiveness in fostering a culture of continuous improvement and professional development among participating nurses.
The initiative had a ripple effect beyond the nine participating nurses, who expressed a desire to expand the evidence-based education intervention to a broader audience. They showed interest in making the program more extensive and accessible to other IDD nurses and provider programs. This interest reflected a clear intention to share the valuable knowledge and skills gained through the intervention with a broader community of healthcare professionals. It also suggested the potential for the initiative to have a lasting impact within the field of IDD nursing.
Wider implications
The results of this educational intervention initiative have implications for further research and the promotion of nursing advocacy within the IDD population. The initiative demonstrated that nurses could improve their advocacy skills and confidence through specialized education. For example, participants described the SBAR communication technique as “useful” and noted its potential effectiveness in their daily practice.
The enthusiasm expressed by participants underscored the desire for ongoing educational opportunities to enhance the knowledge and confidence of nurses specializing in IDD. Comments such as, “I wish this education was provided to us sooner,” and “[T]his gave me new insight into the world of IDD” were voiced after the conclusion of the training. Several nurses commented that the Fatal Five should be taught in traditional nursing programs, further demonstrating the desire for increased knowledge and information sharing about the often-underrepresented IDD population.
A path forward
Strengthened nursing advocacy can improve healthcare coordination, management, and equity for individuals with IDD. One month after the intervention, the agency’s director of health services noted that, because of the training, the nurses appeared inspired and increasingly engaged. She informed the initiative team of her intention to pursue membership with a professional disability nursing association for her entire nursing staff to encourage more opportunities for continuing education.
Expanding education regarding patients with IDD to include healthcare professionals across all settings has the potential to lead to a greater quality of life for this patient population. Public health outcomes can be measured only when the health of the entire community is included. For example, many may find it difficult to comprehend how something seemingly minor like constipation can cause rapid decompensation in someone with IDD and result in a costly and lengthy hospitalization. Expanding these educational efforts beyond the current initiative’s scope will ensure that individuals with IDD receive the quality of care and advocacy they deserve.
Hester’s health story doesn’t end on that day in the oncologist’s office. A few weeks after Grace’s advocacy at the appointment, Hester undergoes a successful lumpectomy and removal of several lymph nodes in the left arm while under general anesthesia. The care team determines that removing the lump and completing a biopsy after the surgery will limit the anesthesia Hester requires. The biopsy is positive for early stage cancer with no metastasis.
Had the provider not completed the surgery, Hester’s outcome may have had a very different ending. This story illustrates how the advocacy of IDD nurses like Grace can change the world for those under their care.
*Names are fictitious.
Lauren Dugger is a supervising nurse for the state of Connecticut’s Department of Developmental Services in Hartford. Kaitlyn Savicki is a nursing professional development specialist at Saint Francis Hospital & Medical Center in Hartford, Connecticut. Karen Lucas Breda is an associate professor of nursing at the University of Hartford in West Hartford, Connecticut.
American Nurse Journal. 2025; 20(7). Doi: 10.51256/ANJ072513
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Key words: Intellectual developmental disabilities, nurse advocacy, patient-centered care
