Sharing this for my student and posted with permission from admins--please share with any others who may qualify! We would like to help improve healthcare access for those who are d/Deaf and hard of hearing!
(In case you are wondering who I am--I am a Professor of Audiology and I was born with bilateral, sensorineural hearing loss and am a and hearing aid user. We have noticed that there is not enough peer-reviewed, published research about this topic, and getting this research out to health care providers so we can improve accessibility.)
One of my Doctor of Audiology students is doing her research project on the accessibility and barriers experienced by d/Deaf and hard of hearing adults (aged 18 years and older) at their general practitioner's appointments. These can include appointments at their family doctor/general doctor, nurse practitioners, physician assistants. Participants must reside in the United States. The link to the study is here: https://cmich.co1.qualtrics.com/jfe/form/SV_2lE5gAVTrViW2cS3
Here are the study details for those of you who don't want to click a link to read them. The relevant contact information for the researchers and IRB is available on the linked page.
"Study Title: Understanding Experiences With Communication Barriers Faced by d/Deaf and Hard-of-Hearing Patients With General Healthcare Providers
Research Investigator(s): Kemeny Ridley, B.S. & Stacey R. Lim, ., PhD., CCC-A, Department of Communication Sciences and Disorders
Introductory Statement You are being invited to participate in a research survey that examines the communication experiences of d/Deaf and Hard-of-Hearing adults when receiving care from primary healthcare providers. Effective communication is essential to safe and high-quality healthcare; however, individuals with hearing differences may encounter challenges during medical appointments, including difficulties understanding information, requesting or receiving communication accommodations, and feeling confident in their care. This study seeks to better understand the types of communication barriers individuals experience during healthcare visits, whether communication accommodations are offered or used, and how the presence or absence of these accommodations may affect access to care, understanding of medical information, satisfaction with care, emotional experiences, and decisions to delay or avoidance of care. The information collected in this study will help identify gaps in current healthcare communication practices and may inform efforts to improve communication access and accommodation practices for d/Deaf and Hard-of-Hearing individuals. The details of the research study are provided in this consent document. You may contact the research investigators (listed above) if you have any questions about the study or participation.
What is the purpose of this study? The purpose of this study is to examine communication barriers and the availability of communication accommodations in healthcare settings for individuals with hearing differences. While existing research has explored communication challenges in healthcare, there has been limited research focused specifically on communication accommodations and barriers within primary healthcare settings. In addition, less is known about how the presence or absence of communication accommodations may contribute to outcomes like avoidance or delay of care, medical misunderstandings, and patient satisfaction. This study aims to explore these relationships by examining the healthcare experiences of d/Deaf and Hard-of-Hearing adults and whether the absence or presence of accommodations impacts their care.
What will I do in this study? You will be asked to complete a one-time, anonymous online survey on Qualtrics. The survey will include questions about your hearing and communication background, experiences communicating with primary healthcare providers, the use of communication accommodations at appointments, and any barriers encountered when requesting or receiving accommodations. You will also be asked about how these communication experiences affect your access to care, understanding of medical information, emotional experiences, and satisfaction with care.
How long will it take me to do this? The survey will take approximately 15-20 minutes to complete.
Are there risks for me to participate in the research? This research poses no risks beyond those encountered in daily life.
What are the potential benefits of participating in this research? This study will provide individuals with hearing differences the opportunity to share their healthcare communication experiences and perspectives, which have not been widely studied outside of the field of audiology. A primary focus of this research is to determine whether communication accommodations were offered or used during primary healthcare appointments and how the presence or absence of these accommodations relates to patients’ healthcare experiences and outcomes. While there may be no direct personal benefit from participating in this study, the information collected will help improve understanding of communication barriers and accommodation practices faced by d/Deaf and Hard-of-Hearing individuals in healthcare settings. Findings from this study may inform healthcare providers, educators, and healthcare systems about areas where communication practices and accommodations could be improved to better support patients with hearing differences.
Will anyone know what I do or say in this research (Confidentiality)? No personal identifying information will be collected as a part of this study. No attempt will be made to identify participants, and addresses will not be collected or stored.
How can I contact someone outside the research team for information about this research? If you have questions about your rights as a research participant, wish to obtain additional information about this study, have concerns or complaints about the research, wish to report a research-related injury, or would like to provide feedback regarding this research, you may contact the following office. You may do so anonymously, if you choose.
Central Michigan University Institutional Review Board
600 East Preston Street
Foust Hall 104
Mount Pleasant, MI 48859
Your Participation is Voluntary. Your participation in this research is voluntary. You may choose not to participate or may withdraw from the study at any time without penalty or loss of benefits to which you are otherwise entitled. Choosing not to participate or discontinuing participation will not affect your relationship with Central Michigan University or any other institution involved in this research."
You must reside in the United States to participate in this survey as the the OP.
I looked it up. Apparently it differentiates between members of the deaf community who were born deaf and who use sign language (Deaf), and people who have hearing loss that occurred later in life and who wear hearing aids and might read lips (deaf). Thus, d/Deaf means either deaf or Deaf.
I'm not eligible to participate in the study due to geography, but I think this study is a very good idea. I hope that it can include family care givers who have severe/profound hearing loss and must assist and advocate for elderly patients in a hospital setting. In my case, both my parents (in their late 90s) were hospitalized at different times for more than a month early this year and I had to navigate dozens, if not hundreds of interactions with health care professionals on their behalf. I used Live Transcription on my phone to assist me in capturing technical details in real time in challenging hearing conditions with people who talk fast and often have a wide variety of accents in busy, noisy environments. On a couple of occasions, even though I explained that I was using my phone to help me hear, I had nurses refuse to speak to me and assist the patient and walk out of the room, saying that they "did not want to be recorded" presumably for liability reasons, even though I wasn't recording video, and reported me to their managers. Hearing impairments can make a highly stressful situation far worse when you are dealing with life and death decisions in a challenging hearing environment.
Thank you, birdcountry99! I imagine that people for whom deaf (Deaf?) culture is a prominent part of their life, whether academically and/or as a life style or for whatever reason, may mistakenly assume that all consumers of hearing-assistance products and treatments understand the terminology.
@CaptainTrips that sounds like a really difficult situation for you! The "challenging hearing conditions with people who talk fast and often have a wide variety of accents in busy, noisy environments" part in particular is very familiar to me and I hope that I described it fairly well when I completed the survey.
It seems so counterintuitive that the very people who are, by job description, supposed to be insightful and caring, are the ones who have the least supportive behavior towards those of us with hearing loss. In my own experience, doctors, nurses and health aides are always in a gigantic hurry, and they barely listen to us or stop to figure out what they can do to help.
Midwestern United States
