How to better serve birthing individuals who are deaf or hard of hearing

American Sign Language (ASL) has been in the news recently. Hand Waves Birth Services’ Childbirth Educators and Full Spectrum Doulas Ally Balsley (she/her) and Brittany Noschese (she/her), say that they are hopeful that this move will influence our nation’s overall effort to be more inclusive and accessible. 

“This is only the beginning of more to come,” they write in an email interview.  “This move should be inspiring to all the health workers and for them to recognize the great need of accessibility for everyone.”

Ally Balsley and Brittany Noschese of Hand Waves Birth Services

Individuals who are deaf are challenged by a chronic lack of access to healthcare information. Balsley and Noschese explain that those who are deaf often struggle with improper translation and communication with their care providers.

Recent research shows that individuals who are deaf and hard of hearing have a higher risk for pregnancy and birth complications and that the infants of individuals who are deaf and hard of hearing are more likely to be born preterm, have low birth weight, and receive a low Apgar score. Authors note that causes of these disparities have not been determined, but they believe that health care providers’ shortcomings in communication may play a large role. 

Alicia Pittman is a clinical coordinator at an acute care hospital working as a Speech-Language Pathologist and she says that language access is crucial to appropriate healthcare. 

“…Lack of information impacts patient outcomes,” Pittman begins.  “In this study, it was found that Deaf patients reported fear, mistrust, and frustration during healthcare visits. It was reported that having a medically trained ASL Interpreter present, reduced these concerns and caused the patient to have a more positive experience.”

Mitra and colleagues add that individuals who are deaf or hard of hearing are at a higher risk for stress, depression, anxiety, and interpersonal violence, which all can influence pregnancy and birth outcomes of course. 

The Hand Waves team suggests that care providers can better nurture the mental health of those in  the deaf community by providing resources and therapy primarily from those who know ASL and have experience with deaf culture. 

“Deaf community is their culture and it plays a big factor in their lifestyle so having professionals who are experts with knowledge in this culture helps greatly,” they explain. “The healthcare providers should have a list of proper referrals ready if needed to best serve the deaf community, and with that, they would be able to ensure that they would be able to receive and ask for the information and support they need.”

Photo by Jonathan Borba on Unsplash

Video Relay Interpreter (VRI) services can be effective, but the Hand Waves team explains that these services are faulted for having poor connections sometimes. They add that deaf individuals don’t always receive transparent information from their medical providers.

“It is pretty common for deaf individuals to receive basic selective information from the providers,” they explain. “Due to the lack of details, the families are limited in making informed decisions.”

Abigail Shipp, CBD(CBI), CBE(CBI), SBD, CLC  is a Certified Birth Doula and Childbirth Educator, Certified Bereavement Doula, Certified Lactation Counselor (CLC) and Certified ASL interpreter practicing in the Omaha metro, Papillion, Bellevue, and Southwest Iowa areas. Shipp echoes many of the barriers Balsley and Noschese describe. 

“Access to information is extremely limited,” she says. “[Deaf individuals] are limited to the providers they can choose from, due to lack of interpreters, and the ability for smaller, private practice providers to provide interpreting services. So right off the bat, they are immediately penalized due to their deafness in not getting the provider of choice.”

In an article by Angela Skujins about growing up with deaf parents, the author explores the role of CODA, an acronym for the “Children of Deaf Adults” stating  that “many CODAs act as interpreters for their parents from a young age, and this can mean taking on responsibilities generally reserved for adults.”

The Hand Waves team writes to this point, “It is unethical for health providers to use family members, especially children, to interpret for their families.  It is incredibly important to have a certified interpreter to do that role as a neutral person in the conversation.” 

Shipp brings up another barrier: effective translation even when a hired interpreter is present. 

“…Interpreters may not be skilled in the language of birth, postpartum, or lactation,” she explains. “They may not be comfortable interpreting these topics, thus interfering with a smooth interpretation of the information.”

Photo by Walaa Khaleel on Unsplash

The Hand Waves team adds: “Currently, there is not a specific place where you can learn the signs for certain words related to the birthing world. We would encourage reaching out to those who teach ASL, possibly take classes on general signs in ASL, and immerse yourself in the deaf community by going to deaf events.” 

They continue that the deaf community’s primary language is usually ASL rather than written English.

“So when they don’t receive the information in ASL, they are not receiving the information in the language where they can fully comprehend and receive full access to the information,” they write. “It is legally and ethically your right to have an ASL interpreter on site or VRI depending on the deaf individuals’ preference.” 

Shipp shares one of her experiences in a role where she was asked to fill in as an interpreter instead of the doula role in which she was intended.

“I was attending a birth [but] because the mother was not yet six centimeters dilated, the interpreter was not allowed to stay and be compensated for their time. Think of all of the communication that happens during labor: the questions from nursing staff, the responses from the laboring mother… that information could not be conveyed, simply because the mother was not yet six centimeters in labor. So then that put the family, the staff and myself in an awkward situation where they relied on me to interpret for this family, when I was there in a support role. Imagine if I hadn’t been there, how would communication have happened?” 

Balsley, Noschese and Shipp all break down how maternal child health professionals can better advocate for the deaf community: 

  • Ensure a proper referral system with those who specialize in serving the deaf community.
  • Make sure patients are comfortable with provided interpreters; be sure they have a choice in what kind of interpreting services they prefer.  
  • Allow time for the interpreting process and give the patient time to express themselves.
  • Provide scholarships for members of the deaf community to become certified in birth and lactation work.  Find a volunteer-based resource list of deaf/signing birth workers here
  • During in-person classes, set up seats in a circle or semi-circle so vision is not obstructed.
  • Check in often to ensure the individual follows what is being taught or explained. 
  • Include videos, props, pictures and hands-on performances to help communicate. 

    Photo by Luiza Braun on Unsplash

Pittman recalls many infant feeding success stories and shares that they all have one thing in common: collaboration with a lactation care provider who can help parents with their infant feeding goals.

There are several ongoing efforts to gather the experiences of the deaf community to better serve birthing people. Find them here and here

“Every birthing person’s experience matters,” The Hand Waves team writes. 

You can connect with Shipp here: 

And Balsley and Noschese here.

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