Faculty Scholarship Addressing Health Disparities with Persons with Intellectual and Developmental Disabilities: A Case Study Based on Boyer’s Model of Scholarship

Most institutions do not consider disability to be a diversity issue Approximately seven million Americans with intellectual and developmental disabilities (IDD) face long-term systemic disparity and discrimination in healthcare (National Council on Disability [NCD], 2022). Use of a medical model of disability, where disability is viewed as itself a disease that needs fixed is common, rather than viewing disability as a diversity and addressing health issues that may affect people with disabilities in that context (Goering, 2015). Most institutions do not consider disability to be a diversity issue (Casey, 2020). Standards for education of most health professional groups are lacking (NCD, 2022), and what exists in education of healthcare professionals is localized (Rotenberg, et al., 2021). In a systematic literature review, evidence on stigmatizing attitudes toward people with IDD was found across health professions (Pelleboer-Gunnink, et al., 2017). Further, a recent survey of physicians found that only roughly half would welcome patients with disabilities in their practices (Iezzoni et al., 2021).

The recently published Core Competencies for Professional Nursing Education (further referred to as the Essentials) sets a “framework for preparing nursing’s future workforce” (American Association of Colleges of Nursing [AACN], 2021, p. 1), which includes preparing students for nursing practice that includes promotion of health equity and social justice in the context of engagement with communities. In the Essentials ten domains, competencies expected in each domain are described, with the domains and competencies representing nursing practice across settings in spheres of care that consider the lifespan and address diverse populations. The four spheres are: disease prevention/health promotion; care for chronic conditions; regenerative or restorative care; and hospice and palliative care (AACN, 2021; Lipstein, et al., 2016).

...persons with IDD are largely excluded from national health surveillance...In the sphere of health promotion and preventive care, persons with IDD are largely excluded from national health surveillance (Bonardi et al., 2019; Havercamp & Krahn, 2019), although such inclusion was called for as early as 2002 (U. S. Department of Health & Human Services [DHHS], 2002). What we do know is that persons with IDD have higher rates of obesity, lower levels of physical activity (Hsieh et al., 2014), and lower levels of consumption of fruits and vegetables and dietary fiber (Adolfsson et al., 2008) than the general population. Access to health preventive services is problematic (Krahn et al., 2015), although long-term health promotion programs directed at persons with IDD exist (Marks et al., 2013).

In acute care, people with IDD are more likely to be hospitalized for ambulatory sensitive conditions, with an overall adjusted rate ratio of 6.1 and higher for certain conditions such as seizure and psychotic disorders (Balogh et al., 2010). When hospitalized, people with IDD had statistically longer observed versus expected lengths of stay for four of five of their most common reasons for hospitalization (mental health conditions, seizures, respiratory infections, and pneumonia) (Ailey et al., 2014). For three of the five most common reasons for hospitalization (mental health conditions, sepsis, and pneumonia), people with IDD were significantly more likely to be in intensive care units than persons without IDD admitted for the same reasons.

People with IDD had statistically higher rates of safety events...during hospitalization...People with IDD had statistically higher rates of safety events (i.e., hospital acquired conditions and complications) during hospitalization for three out of five of their most common reasons for hospitalization (mental health conditions, seizures, and respiratory infections) compared to persons without IDD admitted for the same reasons (Ailey et al., 2014). Other research indicates that readmission to the hospital within 30 days after discharge affects 16-17% of persons with IDD, compared to 14% of people without IDD (Balogh et al., 2018). Nevertheless, specific tailored programs directed at improving their care are few (Moloney et al., 2021).

In the sphere of chronic conditions care, persons with IDD have higher rates of chronic conditions than persons without disabilities, including diabetes, arthritis, cardiovascular disease, and asthma (Garcia-Dominquez et al., 2020; Krahn & Fox, 2014). Reported efforts to address chronic conditions in the population largely centered around screenings and having regular primary care visits, with a lack of attention to research and practice on ongoing management of chronic conditions (Hanlon et al, 2018) as is considered best practice (Mattke et al., 2015).

In the sphere of hospice and palliative care, people with IDD face many barriers accessing such care (Friedman et al. 2012). These barriers include staff knowledge, training and experience; communication, and collaboration (Adam et al., 2020); barriers to partnerships between community-based services and palliative care providers; and addressing end-of-life training among staff in community-based services (Moro et al., 2017). Needed are efforts to improve access to and the quality of care across spheres of care.

The purpose of this article is to describe an exemplar of faculty scholarship efforts of two faculty, one PhD-prepared and one DNP-prepared. For more than 15 years, the two faculty have developed an area of scholarship that addresses improving the quality of care of people with IDD through research and through quality improvement programs in three of the four AACN identified (2021) spheres of care. The efforts to develop this area of scholarship involved partnering with students in Master of Science capstones and Doctoral projects and partnering with community-based organizations. The efforts of the two faculty take place within an academic medical center with a commitment to addressing health disparities and promoting health equity and social justice (Rush University, 2022c); these efforts reinforce that commitment.

Boyer’s Model of Scholarship

The scholarship efforts described within are based on Boyer’s Model of Scholarship (1990; 1996b). In 1990, the Carnegie Foundation for the Advancement of Teaching (Carnegie Foundation) issued the landmark special report Scholarship Reconsidered: Priorities of the Professoriate (Boyer, 1990). The author, Ernest Boyer, was an innovator in secondary and post-secondary education. He was the President of the Carnegie Foundation, having previously served as the U.S. Commissioner of Education from 1977 to 1979 (Messiah University, 2022). In the Carnegie Foundation special report, Boyer challenged what were current views of scholarship and faculty priorities and encouraged systems of higher education to move forward from the debate ‘teaching versus research’’ and adopt a broader meaning of scholarship. He proposed a new model that includes four components: discovery, teaching, application and integration (Boyer, 1990). The four are synergistic and should be considered as a whole (Colbeck & Wharton-Michael, 2006). Boyer specifically recognized nursing clinical practice as part of scholarship (Boyer, 1996a).

Boyer specifically recognized nursing clinical practice as part of scholarship Boyer’s Model of Scholarship is linked to engagement (Boyer, 1996b; Hofmeyer et al. 2007), characterized by social justice (Beaulieu et al., 2018) and focus on community partnerships (Burrage et al., 2005). Contributing to and improved congruence between the mission of academic institutions and scholarship is part of application and integration (Hofmeyer et al., 2007). Boyer (1987) advocated connecting educational programs to the community through planned service activities with clear objectives (See Table 1 for description of Boyer’s Model of Scholarship).

Table 1. Boyer’s Model of Scholarship with Considerations

(Boyer, 1990; 1996b)

Institutional Environment

Statement of Mission
The mission of the academic medical center “is to improve the health of the individuals and diverse communities we serve through the integration of outstanding patient care, education, research and community partnerships;” (Rush University, 2022d, p. 1). Connected to the mission and vision, the institution is committed to diversity, equity and inclusion, and promotes measurable initiatives to achieve that commitment (Rush University, 2022b). The university is committed to health equity and social justice (Rush University, 2022c).

Implementation of Mission
Disability is a diversity issue at this academic medical centerDisability is a diversity issue at this academic medical center (Rush University, 2022e). The Americans with Disabilities Act (ADA) task force was established in 1991, one year after the passage of the ADA Act (1990). The ADA Task Force supervises numerous efforts to educate employees, students, patients, and community members about how disability inclusion enhances its mission and vision (Ailey et al., 2016). Demonstrating commitment to disability in the healthcare workforce, the Students with Disabilities: Nursing Education and Practice Symposium was hosted by the College of Nursing at the institution in 2003 (Pischke-Winn, et al., 2004). A new medical center building opened in 2012, further demonstrating commitment to persons with disabilities. The facility incorporated the concept of universal design to promote accessibility for people with disabilities. People with disabilities were involved in the planning of this project (Ability Magazine, n.d.). The two faculty whose efforts are described within are members of the ADA Task Force.

In 2007 an Interprofessional Adults with IDD committee was established to improve care in the acute care setting for persons with IDD (Ailey & Hart, 2010; Ailey, et al., 2017). Soon after the committee was established, strategic planning was conducted. During the process, specific objectives were developed with a goal of support from leadership of the organization (i.e., change at the meso-system level) and of achieving national recognition (i.e., change at the macro system level). We conducted community outreach for opinions and advice about our programs to tailor care in the acute care setting and for partnership opportunities that could involve students in service projects to address community needs and meet program of study requirements. A goal was to develop programming in such a way that funding could be sought for a national conference on improving health and healthcare of people with disabilities, including IDD (Ailey, personal communication, 7/19/22).

Academic Partnerships
The College of Nursing has partnered for more than 20 years with two community-based organizations that provide services to people with IDD across the lifespan for full-term clinical rotations in the public health nursing prelicensure course. Including the two faculty authors, multiple faculty members have been involved in supervising clinical rotations and synthesis projects required in the course. Synthesis projects have addressed multiple needs in the organizations, such as developing menus, tools for assessment of polypharmacy, organization of influenza vaccine campaigns and blood borne pathogen training (Friese, personal communication, 7/11/22).

People with disabilities were involved in the planning of this project The faculty and student scholarship described within occurred at the graduate level. The prelicensure nursing program offers s generalist entry Master of Science in Nursing (Rush University, 2022a) and advanced nursing practice programs offer a Doctor of Nursing Practice, based on AACN (2004) recommendations. The university in general provides almost all programs at the graduate level, with partnership opportunities with partnering with students in Master of Science programs in Health Systems Management and Speech Language Pathology and in Doctor of Medicine and Doctor of Occupational Therapy programs.

Application of Boyer’s Model to IDD Scholarship

Using Boyer’s model, we have addressed the problem of health disparities facing the community of persons with IDD...Using Boyer’s model, we have addressed the problem of health disparities facing the community of persons with IDD with results related to the four components of scholarship (1990; 1996b), and within teaching and application to the addressing quality improvement in spheres of care (AACN, 2021; Lipstein et al., 2016). Our work meets the criteria of scholarship of teaching because it is documented, available for peer review, and disseminated (Glassick, 2000; Limoges et al, 2015).

Discovery
In Boyer’s model, discovery is closest to the concept of research (Boyer, 1990; 1996b). The Rush PhD faculty has a history of federally-funded research (e.g., National Institute of Health [NIH]) in the area of cognitive-behavioral problem-solving interventions among persons with IDD living in residential settings (Ailey, Miller et al., 2018). Based on assessment of gaps in preventive programming offered in residential settings, we were both involved in adapting an existing research-based program for implementation among persons with IDD and their residential staff (Ailey et al., 2012a), leading to a program of NIH-funded research (Ailey, Miller et al., 2018). Prior to funding, ten students over eight years completed Master of Science in Nursing capstones related to specific issues of evaluation of the pilot research (Ailey, personal communication, 7/11/12). These efforts informed the eventually funded proposal. Since funding, an additional six students have completed projects related to ongoing evaluation of fidelity (Ailey, Hellrung et al., 2019), cohesion (Ailey, Angeles, et al., 2019), and how to evaluate cost outcomes (Ailey, Johnson et al., 2019; Johnson et al., 2019) in the funded research.

Our work also focuses on development of tailored programming with persons with IDD connected to the Adults with IDD committee at the academic medical center (Ailey & Hart, 2010; Ailey et al., 2016; Friese & Ailey, 2015). Related to the efforts of the Adults with IDD committee, research was generated on chart reviews related to hospitalization reasons and factors related to complications for persons with IDD (Ailey et al., 2014; 2015); issues related to prolonged hospital stays (Ailey, Cabrera et al., 2019; Cabrera et al., 2018); the impact of training on documentation of presence of IDD as a secondary condition in the Emergency Department (Bathje et al., 2021b; 2022a; 2022b); and on cost outcomes of tailored programs (Wirtz et al., 2020). Students in nursing, medicine, occupational therapy, speech language pathology, audiology, and health systems management were involved in these projects.

Teaching and Application
In health professions education, teaching is closely connected to the Boyer model component of application (Boyer, 1990; 1996b). Application involves translation of knowledge to practice with interventions and programs to address social problems at the micro-, meso-, and macro- levels (Hofmeyer et al. 2007). This approach respects the priorities of diverse stakeholders (Krawczyk et al., 2019).

Quality Improvement Across Spheres of Care. We have served as advisors or content expert, readers, or consultants for 18 published or presented student projects involving Master of Science in Nursing, Master of Science in Health Systems Management, Doctor of Nursing Practice, and Doctor of Occupational Therapy students. Nearly 60 student projects (some projects are implemented by more than one student) considered quality improvement in three of the four spheres of care, namely health promotion and preventive care, acute care, and chronic conditions care (See Table 2 for a summary of these projects listed by sphere of impact).

Table 2. Summary of Scholarship of Teaching Projects

Integration
The integration component of Boyer’s model means developing interprofessional relationships and connections in ways that lead to higher application in the focus of scholarship. Integration in our work has led to collaboration with students on synergistic projects that build on each other and lead to sustainable change. Over time, these efforts have impacted change at the micro- and meso- system levels, with beginning influence for change at the macro-system level. This is particularly so in regard to the work of the interprofessional Adults with IDD Committee and the implementation of the strategic planning of the committee.

...the Adults with IDD Committee determined the need to gain the support of medical center leadership. As noted, the Adults with IDD Committee determined the need to gain the support of medical center leadership. Since the 2007 founding, it has been a priority for healthcare professions students across disciplines to become involved in creating a sustainable model of tailored care with patients with IDD at the medical center. A chart review, in which students participated, demonstrated that people with IDD experienced higher rates of complications during hospitalization than people without IDD hospitalized for the same reasons (Ailey et al., 2014; 2015); this finding led to leadership support to develop a care plan and an educational module for healthcare staff regarding the care of patients with IDD (Friese & Ailey, 2015). Students across disciplines volunteered to organize and implement Neurodiversity Allies (formerly Special Needs Buddies; Swenson & Johnson, 2011), with renewed efforts following COVID-19 restrictions on hospital visitations (Bathje et al., 2021a; Nissen & Lustbader, 2021). This ongoing work led to a significant outcome; leaders in the Security Department requested specific training in interacting with individuals with IDD (Hellrung et al., 2019).

Now student projects are increasingly interprofessional, and some have been conducted with students from several programs. For example, Master of Science in Nursing, Doctor of Occupational Therapy, and Master of Science in Health Systems Management students jointly developed a project in the Emergency Department to develop and evaluate training on documentation of the presence of IDD as a secondary condition, along with an evaluation for cost outcomes of the project (Bathje et al, 2021b; 2022a; 2022b). Multiple faculty from various disciplines have been instrumental in these student projects.

Now student projects are increasingly interprofessional...Results related to cost outcomes have indicated that medical centers without programs tailored to underserved populations had higher costs compared to hospitals with tailored programs (Wirtz et al., 2020). This information has led to additional leadership support at our medical center and increased interest elsewhere in tailored programs for patients with IDD (Ailey, personal communication, 8/17/22).

Community outreach has been ongoing. Partnership with students has focused on projects related to health promotion and preventive care on issues such as improved nutrition, wellness activities, and fall prevention and on chronic conditions care in areas such as timely recognition of health conditions (Perez et al., 2016; Preston et al., 2022), familiarity and comfort in communicating with first responders to get assistance (Friese, 2022; Friese & Buddig, 2020), medication self-administration (Liggons & Ailey, 2016), and others. All projects have clear objectives related to outcomes. In post-COVID pandemic planning by the Adults with IDD Committee, joint discussion is being held with multiple community-based organizations regarding planning partnership service project opportunities that involve students and also meet program of study requirements IDD (Ailey, personal communication, 7/19/22).

Summary of Outcomes
Impact at Micro- and Meso-Systems. Collectively PhD/DNP collaboration and partnering with Master of Science and Doctoral students in ongoing projects has been a positive effort. The synergy of these projects has clearly impacted the micro- and meso- systems of the medical center and at community-based organizations, as described above.

Beginning Macro-System Change. Efforts at the medical center to develop tailored care programs in the acute care setting for persons with IDD have gained national recognition, being referred to as the “gold standard” in acute care of persons with IDD (Berthold, 2014). A documentary, None of Us Want to Stand Still, regarding tailored programming at two institutions with people with IDD is available on the Agency for Healthcare Research and Quality (AHRQ) Priority Populations Resources page (Ailey et al., 2020; AHRQ, 2020).

To inform decision-making at the macro- population and system levels, federal funders often look for innovative approaches to address problems (Administration for Community Living [ACL], 2022; AHRQ, 2021). Based in part on efforts to develop tailored programs at the medical center and national recognition, AHRQ funding was obtained for a nationally-invited conference on the health and healthcare of people with disabilities (Ailey, Bathje et al., 2018). The nationally invited Partnering to Transform Health Outcomes with People with Disabilities (PATH-PWD) Conference was held in March 2017 and attended by about 150 providers, researchers, academicians, insurers, policy experts, and people with disabilities to address disparities and make concrete recommendations for improvements (Ailey, Bathje et al., 2018). Collectively, attendees had capabilities to implement practical solutions in identified areas to improve healthcare of people with disabilities.

Collectively, attendees had capabilities to implement practical solutions in identified areas to improve healthcare of people with disabilities.Five work groups were established as a result of this conference: 1) Education of Healthcare Professionals; 2) Employment of People with Disabilities in Healthcare; 3) Developing Research Capacities; 4) Extending the Use of Existing Programs in Acute Care; and 5) Advocacy. A follow-up meeting was held April 13, 2018 to report on work of these groups (Ailey, Bathje et al., 2018). The Extending the Use of Existing Programs in Acute Care oversaw the development of the None of Us Want to Stand Still documentary (Ailey et al, 2020).

Continuing efforts were funded through a five-year grant from the Administration for Community Living (ACL, 2020) to strengthen the healthcare workforce in the area of health and healthcare with persons with IDD. The Partnering to Transform Health Outcomes with Persons with Intellectual and Developmental Disabilities IDD (PATH-PWIDD) program is led by five core partners with Rush University as the lead institution. The other four partners are St. John Fisher College Golisano Institute on Developmental Disability Nursing; the University of Illinois at Chicago Department on Disability and Human Development; the University of Minnesota Institute on Community Integration; and Villanova University (ACL, 2020).

A national cross-sector consortium of advocates, healthcare providers, community-based organization representatives, and leaders in healthcare professional education and policy is developed through three consortium action networks. The consortium is developing and implementing curricular materials and practice experiences into interprofessional education programs at the five core partner institutions with planned spread to thirty additional institutions over the five-year grant period (ACL, 2020). A presentation on the work of the PATH-PWIDD Program was given at the Exploring an Optimal Integrated Care System for People with Intellectual and Developmental Disabilities: A workshop held by National Academies of Science, Engineering and Medicine (Ailey, 2021). Collectively, these efforts/events demonstrate beginning influence at the macro-system level.

Conclusion: Developing Nursing Scholarship

An ongoing program using Boyer’s Model of Scholarship (1990; 1996b) to address health disparities with a specific population to promote health equity and social justice can have impact at micro-, meso-, and macro-systems levels. The mission of our academic institution and ongoing efforts to address diversity, health equity, and social justice influence, and are influenced by, faculty scholarship targeted to improve the lives of people with IDD. Our ongoing efforts in the areas of discovery/research and quality improvement across spheres of care have provided opportunities to partner with students across disciplines and have demonstrated positive impacts.

Partnering with communities is key for engagement of the community, faculty, and students in the efforts.Involvement of nursing and students in other health professions in an area of scholarship provides a robust educational experience that includes experiences in presentations at professional conferences and publications. Partnering with communities is key for engagement of the community, faculty, and students in the efforts. The needs of community partners provide high quality opportunities for students to address service requirements to meet their program of study, with reciprocal benefits to those who receive tailored care. Community partnership such as these will better prepare a nursing workforce capable of delivering care that addresses diverse populations, such as people with IDD, across spheres of care throughout their lifespan.

Authors

Sarah H. Ailey, PhD, RN, FAAN
Email: Sarah_H_Ailey@rush.edu
ORCID ID: 0000-0003-2364-6149

Sarah Ailey is a Professor of Nursing at Rush University in Chicago, IL. She is the Principal Investigator for the PATH-PWIDD (Partnering to Transform Health Outcomes with Persons with Intellectual and Developmental Disabilities) Program (path-pwidd.org), funded through a 5-year grant from the Administration for Community Living and of the NIH-funded Steps to Effective Problem-solving program. She is the immediate past President of the Alliance for Disability in Health Care Education (ADHCE.org). Dr. Ailey is a member of the ADA Task Force and co-chairs the Adults with Intellectuals and Developmental Disabilities Committee at Rush University Medical Center.

Tanya R. Friese, DNP, RN, CNL, USN (Retired)
Email: Tanya_R_Friese@rush.edu

Tanya Friese is an Assistant Professor at Rush University College of Nursing, specializes in public/community and mental health, and systems leadership. Dr. Friese is a member of the Diversity and Inclusion Committee and the ADA Task Force at Rush University Medical Center for over fifteen years, she has participated in multiple interprofessional research initiatives to improve care for underserved populations, integrating material into curricula for future healthcare professionals and serving as a co- mentor for their scholarship. She has been awarded the Eugene J-MA Thonar, PhD Award for furthering Rush’s commitment to accessibility and to providing professional and educational opportunities to people with disabilities and the J. Robert Clapp Jr. Diversity Leadership Award at Rush.