For 2021-2022, The Alliance awarded two scholarships.
There were presentations on both projects at our June 3, 2021 Annual Meeting.
One scholarship was awarded to a group of students at Harvard University for their project:
“Interdisciplinary development of a guidebook for clinical trainees to optimize care for patients with disabilities project”. Ethiopia Getachew (1st year HMS student), Camille Herzog (3rd year HSDM student), and Claire Rushin (1st year HMS student) reviewed the existing literature, interview healthcare professionals, and conducted needs assessments with people with disabilities. Wunghee “Christina” Lee (2nd year Doctor of Physical Therapy student at the Massachusetts General Hospital Institute for Health Professions) compiled best practices within physical therapy and advised the medical and dental students. Dorothy Tolchin, MD, EdM (Department of Physical Medicine and Rehabilitation, Harvard Medical School) provided expert guidance and review of materials, connected the developers with individuals living with disabilities and experts in the field of disability, and oversaw the completion of the project.
“At Harvard Medical School (HMS) and Harvard School of Dental Medicine (HSDM), through the efforts of the Disabilities in Medicine and Dentistry Working Group, we have developed a longitudinal disability curricular thread with multiple touchpoints integrated into the preexisting medical and dental school curricula. These efforts have begun to equip future physicians and dentists to reduce healthcare disparities experienced by people with disabilities, and to foster provision of high-quality care to all patients regardless of disability status. Several sessions and modules have been introduced to educate students about key disability concepts and skills; however, many of our peers have expressed need for more guidance in constructing an inclusive clinical environment that adapts to and satisfies the care needs of patients with disabilities. Specifically, students have felt unprepared to modify the standardized physical exam sequence for patients with varying degrees of physical, intellectual, and sensory functioning… We aim to create a guidebook for adapting the physical exam to accompany clinical students as they learn to navigate encounters with patients with disabilities. The guidebook will emphasize a patient-centered approach to clinical interactions and include directions on how to maintain patient comfort and ensure the highest standard of care during a comprehensive physical exam. The content will be informed by multiple stakeholders, including patients and interprofessional clinicians, and developed by an interdisciplinary team of students. Use of equipment, adaptation of common medical and dental exam maneuvers, and communication techniques will be emphasized.
The second scholarship was awarded to Carol Adams, a PhD student at Duquesne University for her “Nurses’ Self-Perceptions of Competence in Identifying, Assessing, and Reporting Sexual Violence in Adults with Intellectual Disabilities:
A Grounded Theory Study”. Here is a brief explanation:
“Individuals with ID are sexually assaulted at a rate more than seven times higher than the rate for persons with no disabilities. Underreporting, both by self-report and health provider report, is a significant problem for adults with ID who have experience sexual violence. Nurses caring for individuals with ID are ideally positioned to alleviate barriers and act as facilitators to improve treatment of individuals with ID who have experienced sexual violence. This study seeks to discover nurses’ understanding of their competencies in caring for and managing cases of sexual violence in adults with ID.”
For 2020-2021, The Alliance awarded two scholarships.
There were presentations on both projects at our June 4, 2020 Annual Meeting.
One scholarship was awarded to a group of Occupational Therapy students at Rush University for their Community Healthcare Advocacy Team for Individuals with Disabilities project. Leadership oversight is provided by Dr. Molly Bathje, an Assistant Professor at Rush University in the Department of Occupational Therapy. Here is a brief description:
“Neurodiversity Allies (NDA) is an interdisciplinary, student-led community service
initiative at Rush University. It aims to support individuals with intellectual and developmental
disabilities (IDD) while they receive health care services at Rush University Medical Center, as
well as to enhance health profession students’ knowledge and experience with people with IDD.
NDA members include students from RU’s college of medicine, college of nursing, and college
of health sciences. Members volunteer in the hospital, ambulatory clinics, and outpatient
programs with a focus on providing support, socialization, and comfort to patients with IDD.
Lack of knowledge and familiarity about interacting effectively with patients with IDD
may lead to negative attitudes towards this population (Tervo & Palmer, 2004). To fill this gap, we are proposing an educational series for Rush students to learn more about the care of people with IDD. In alignment with the ADHCE’s competency vision, our ultimate goal is to enhance health professions students’ knowledge and confidence in providing care for people with disabilities. The educational series will address ADHCE Core Competency 2: Professionalism and Patient-Centered Care. Due to inadequate training, many health care professionals possess inaccurate assumptions and biases towards patients with disabilities. This lack of training may have a detrimental effect on the quality of services provided to this population. Our educational series will serve to address these health care disparities by discussing various principles of professionalism, communication, and respect. The series will include guest speakers with firsthand experiences to reinforce principles taught at the previous session and to provide valuable patient perspectives. The educational series will be presented over the course of 6 months. Each session will cover a different principle of ADHCE Core Competency 2, and will last approximately 1 hour in duration. Session 1 will challenge students’ implicit biases and assumptions and will teach strategies to approach patients with respect and humility. Session 2 will feature a young adult with Down Syndrome who will discuss their healthcare experiences. Session 3 will offer strategies in building a trusting relationship with patients, parents, and caregivers by using understandable and person-first language. Session 4 will feature a panel of caregivers who will provide concrete examples of these successful relationships. Session 5 will offer specific training on selecting and utilizing sensory items for future interactions with this patient population. We will conclude the educational program by reminding students of how power dynamics influence care, and will discuss strategies to provide patient-centered care to this population. Participants should feel equipped to advocate for equitable care for people with IDD. By the end of the series, we are confident that students will be aware of the assumptions they hold, increase their understanding of the needs of people with IDD, and feel empowered to provide optimal care. Students who attend all sessions will receive a pin to add to their Rush ID, informing patients of their status as an “ally” alongside the IDD population.
The second scholarship was awarded to Melissa Desroches for her mixed methods study (internet survey with nested qualitative interviews) is to identify perceived barriers and facilitators to quality medical surgical nursing care of adults with intellectual disability.
Denise Daudelin, RN, MPH is a co-investigator and is the primary research mentor of Dr. Melissa Desroches. Ms. Daudelin is the Director of Research Process Improvement at Tufts CTSI. Janis Breeze, MPH is the statistical mentor for this study and is also the Associate Director of the Biostatistics, Epidemiology, and Research Design Center at Tufts CTSI. Dr. Kathleen Fisher is a co-investigator, an established ID nursing researcher, and a Professor in the College of Nursing and Health Sciences at Drexel University. Dr. Fisher will assist with qualitative data analysis. Here is a brief description:
“People with intellectual disabilities (ID) face many health disparities, many specific to hospital care: these individuals have higher rates of hospitalization than those without ID, are admitted for conditions which would usually be treated in an outpatient setting, and have longer lengths of stay and increased safety risks (Iacono, Bigby, Unsworth, Douglas, & Fitzpatrick, 2014). Reviews of hospital experiences of people with ID reveal negative attitudes and lack of preparation of healthcare providers to care for people with ID (Iacono, 2014). While the majority of professional hospital care is provided by medical-surgical nurses (Academy of Medical Surgical Nurses, 2019), we are not aware of any studies to date exploring the attitudes and experiences of medical-surgical nurses toward caring for adults with ID in the US. This is despite the fact that medical-surgical nursing care is a primary factor affecting the quality of hospital care experienced by people with ID and their caregivers (Lewis, Gaffney, & Wilson, 2016). The goal of this mixed methods study (internet survey with nested qualitative interviews) is to identify perceived barriers and facilitators to quality medical surgical nursing care of adults with ID. Medical surgical nurses are the “glue” that hold together the input of many health professionals and the many moving pieces of hospital care. As such, exploring the experiences of medical surgical nurses will inform multidisciplinary educational and quality improvement interventions to improve hospital care of adults with ID.
For 2019-2020, The Alliance awarded one scholarship
This scholarship was awarded to a group of medical students for the ‘Patients with Disabilities as Teachers’ (P-DAT) Program.
The three medical students at Geisinger Commonwealth School of Medicine (GCSOM): Douglas Wells, M3, Avisha Shah, M3, and Emily Herman, M2. All three students are members of an advocacy organization called Community Healthcare Advocacy Team for Individuals with Disabilities (CHATID) which consists of students, faculty advisors, community service providers, and individuals with disabilities.
Here is a brief description: “The P-DAT program is a three-hour education session, originally created by the Department of Family Medicine at Lehigh Valley Health Network, proven effective to teach the general public basic communication etiquette and sensitivity unique to people with disability. A 2013 study has shown that 98% of medical school students who completed the program found it to be effective in “increasing overall awareness and sensitivity and improving competency for future interactions with patients”. The P-DAT session contains three components. First, a person with disability as the P-DAT educator describes their daily routines and health care experiences to encourage learners to interact with people with disabilities. Second, a half hour film called “Patient Voices” is shown, which portrays a mock encounter with eight individuals with different disabilities. The film is meant to show learners how to interact with them using respectful and patient-centered etiquette. Lastly, lessons from the film are solidified with further discussion between the P-DAT educator and learners. We plan to modify the P-DAT into a one-hour session with a focused discussion on the health care experienced by patients with disability as an educational intervention for health care professionals. The goal of the project is to enhance health care providers’ knowledge on disability etiquette to provide inclusive and respectful care for this patient population. The objectives of the project are: first, to promote recognition of the importance of using proper disability etiquette such as Person First Language and becoming familiar with resources in the community for people with disabilities; second, to promote self-identification of their personal barriers and those of their practice overall for patients with disability while creating solutions for improvement.