October is National Disability Awareness Month, but for Megan Morris, PhD, MPH, CCC-SLP, and others at BWH, how the community provides patient-centered care for those with disabilities is top of mind throughout the year.
Over the last six years, as part of the BWH Disabilities Awareness Initiative, the hospital has actively improved access to care for patients with disabilities through multiple efforts, including purchasing accessible medical equipment, removing barriers, collecting information on disability status and offering training and educational programs for staff. Morris, who joined BWH this June, brings another dimension to the hospital’s focus on disability awareness and accessibility by actively studying the challenges that patients with disabilities face.
Morris is a speech-language pathologist and qualitative researcher who comes to BWH from Mayo Clinic, where she was an assistant professor. Now, she’s the director of the Qualitative Research Core at BWH’s Center for Surgery and Public Health (CSPH), where she works with faculty, fellows and staff to plan, implement, monitor and evaluate qualitative and mixed-methods research studies.
Since its inception in 2005, the CSPH has focused on disparities work, including research on surgical outcomes for patients of diverse socioeconomic statuses, ages, genders, levels of education, races, ethnicities and geographic distributions/locations of residence. As part of this work, Morris will encourage researchers to broaden their definitions and scopes to include individuals with disabilities.
Clinical & Research News asked Morris to discuss her role and share her insights into providing patient-centered care for those with disabilities based on her research.
How did you become interested in disability research?
MM: I’m a speech-language pathologist by profession, so I’ve always been passionate about ensuring that patients with communication disabilities have a voice in their health care. I will never forget one of the first studies that I did—I was interviewing a woman who had cerebral palsy and was a wheelchair user, and I asked her, “What makes you feel welcomed by a health care provider?” Her response was, “I feel welcome when I can get in the front door.” That really made me think, wait, we need to back up and reconsider what we are doing, and figure out how we can treat patients with disabilities respectfully. That’s when I really became interested in making sure that the health care needs of all patients with disabilities are met.
There is a deep-rooted history of mistrust among providers and people with disabilities. When you look closely at the power dynamics, doctors hold the key to patients’ ability to access the health care system. As a consequence, many patients feel as though providers question their disabilities and are overly paternalistic. I think the onus is really on us as providers to lead the charge and the discussion to address these attitudes, and to make sure that the hospital is accessible and accepting of people with disabilities, and that they in turn feel welcome here.
What is qualitative research, and what role does it play in understanding the needs of those with disabilities?
MM: These are populations that often cannot easily participate in research—they may not be able to read or speak, or they may have other access issues, and are thus often excluded from large trials.
The disability rights movement has a rallying cry, “Nothing about us, without us.” It’s my goal to bring patients’ voices into research, and qualitative research allows me to do that. Qualitative research is a method of inquiry designed to understand the participant’s behavior, experiences and perceptions with regard to specific topics or issues. It’s really helpful in understanding the “why.” For this reason, I turned to qualitative research to explore the experiences and perceptions of patients with disabilities.
October is National Disability Awareness month —what are a few things that clinicians can do right now to improve the care of patients with disabilities?
MM: The number one thing clinicians can do is to put aside biases and assumptions, and demonstrate humility and respect. Patients with disabilities often tell me that they feel like they speak a different language when they talk to their doctor. As a clinician, just admitting that you don’t know what to say or how best to interact can go a long way. Many patients say they wish that their doctors would simply ask them, “How can I best meet your needs as someone with a disability?”
That being said, there are a number of specific strategies that clinicians can employ to engage with patients with disabilities. For example, making eye contact is an important element of patient-centered care, but it becomes even more important when the patient has a hearing or language disability.
Recent policies, including Section 4302 of the Affordable Care Act (ACA), recommend that health care organizations track patients’ disability status, in addition to race, ethnicity and primary language. The purpose is to identify patients who require health care accommodations. After the ACA passed, the Department of Health and Human Resources (HHS) released a set of recommended questions for clinicians to use, but these haven’t been validated in the health care setting. I’m currently in the final stages of a study that engages key stakeholders, including patients and providers, to develop a set of disability questions appropriate for the health care setting. Our draft disability questions are similar to questions recommended by a subcommittee of the United Nations and can be used across disability categories. They are:
- Are you blind or do you have serious difficulty seeing, even when wearing glasses?
- Are you deaf or have serious difficulty hearing?
- Do you have serious difficulty walking or climbing stairs? (5 years or older)
- Do you have difficulty remembering or concentrating? (5 years or older)
- Do you have difficulty dressing or bathing? (5 years or older)
- Using your customary or usual language, do you have difficulty communicating (for example, understanding or being understood)?
As a researcher, what do you hope to see from the medical community in five or ten years, regarding patients with disabilities?
MM: I hope to see consistent documentation of patients’ disabilities as a demographic characteristic. When we look at other populations that have been the focus of disparities research (racial, ethnic, and socioeconomic minorities for example), we see that the foundation for this work is counting these people. Only then can we start gathering the data we need to track metrics like quality and patient outcomes.
I also hope to see improved accessibility and accommodations.
Adil Haider, MD, MPH, Kessler director of CSPH, has said that “equality is the cornerstone of medicine.” Up until very recently, people with disabilities weren’t included in conversations about equality in medicine, and they need to be. The number of people with disabilities is growing, and it’s important now, more than ever, that we bring them to the table, treat them with respect, and provide them with the level of care that they deserve.
This year marks the 25th anniversary of the Americans with Disabilities Act (ADA), which prohibits discrimination based on disability. As a country and as a society, we have made great strides with the passage of the ADA, and now the ACA, but we still have a long way to go.