Many of us have trouble talking to doctors, but added barriers stymie people who stutter. Last year, Dr. Leana Wen recalled how a senior resident belittled a stuttering patient in the emergency department; he had assumed that the patient, a lawyer, was stupid. Such attitudes led Hector Perez, M.D., to study the health-care experiences of people, like himself, who stutter. He and his colleagues found that discomfort around talking led some to shun health care, but rapport with a trusted doctor helped them open up about their problems.
The tip of the stuttering iceberg
Perez, a clinician-researcher at Montefiore Medical Center in New York City, said by email that the study arose from his personal experiences. As a patient, he noted that some doctors interrupt and talk down to him, until he mentions that he’s a physician, too. He wondered if others who stutter had similar experiences, if they felt intimidated when talking to doctors, or if they skipped care altogether. Indeed, he wanted to solve a puzzle:
When I spoke with senior physicians, most told me they had never seen a stutterer in the office. This intrigued me, as the best epidemiologic data indicates that about 1 out of 100 adults stutters to some extent.
Besides, as Perez and colleagues note in their research paper, stuttering worsens under conditions common to health care. For instance, feeling rushed or under stress can cause flare-ups. Talking to authority figures, such as doctors, or discussing sensitive topics, such as bodily functions, can heighten stammering. In addition, many stutterers struggle with talking by phone.
To learn how all this plays out in health care, the researchers recruited 16 stutterers at a National Stuttering Association conference. Their study, although small, offers a rare glimpse at the health-care encounters of people who stutter, a group largely ignored by other health-care researchers. Perez asked the volunteers, gathered into focus groups, about their health-care experiences and whether their stuttering played a role. Two researchers, working independently, found five themes in their answers:
Participants felt uncomfortable speaking with medical office staff, especially by phone. They deemed staff members impatient, in part because they would hang up before patients could get a word out. Likewise, many patients dreaded the check-in desk, where they felt pressure to quickly state their name and why they had come. One relived a bad memory: “I can’t get my name out…so I’m forced to spell out my own name.”
Study volunteers felt more comfortable, but not always at ease, talking to doctors. Many valued having a doctor who was used to how they spoke.
Their talking dis-ease kept some from seeking or receiving health care. For instance, one woman would delay seeking prescription refills, which required leaving a phone message, until nearly out of medicine. Another kept quiet about some of her concerns because she couldn’t say the words, and a third would go to the doctor only if her life depended on it. A fourth person voiced the stigma and shame borne by many: “I just didn’t want to expose myself as a person who stutters.”
Reticence and rapport
Even if their stuttering harmed their health, some patients had no desire to discuss it with doctors. One hid it from her doctor despite its role in her panic attacks at work. Another expected the doctor to say something useless, such as “slow down,” as if that would solve the problem. Such patients often lacked rapport with their doctors or thought them too ignorant about stuttering to help them. “I agree that doctors do not know enough about stuttering,” Perez said.
When doctors mentioned the stuttering, some patients bristled at their lack of tact and understanding. One recalled a doctor saying, “I do notice that you have a stutter.” That upset and alienated him. In another unfortunate encounter, a woman said a doctor offered her a tranquilizer because she seemed nervous talking to him.
On a cheerier note, some participants found it helpful to discuss their speech disorder with a trusted doctor. In fact, the woman who suffered panic attacks eventually told her doctor how stuttering affected her life. “It opened up a whole new world for me,” she said.
Borrowing a voice
Many participants relied on other people to speak for them in health-care settings. They had their secretary or a relative make their appointments. Although all patients were adults, some had their mother speak for them during medical visits. This could keep patients from broaching sensitive topics, the researchers warned.
From acceptance to assertiveness
Those who accepted their stuttering were able to speak more assertively with doctors. They cared less about what others thought of them and felt driven to say what they needed to say. For instance, one refused to let others’ time pressure become his; he would take all the time he needed to speak.
Caring for patients who stutter
“Our findings call attention to an overlooked vulnerable population in health care,” the researchers wrote. Indeed, their findings hint that communication woes could undermine stammerers’ health care and health. However, the study only explored their perceptions, not anyone’s actual behavior or health outcomes.
As an antidote, Perez and colleagues urge health-care workers to give stutterers the time they need to speak. They should maintain normal eye contact with them during stuttering episodes, even if patients show nonverbal symptoms, such as twitching or odd facial expressions.
Health-care providers should not bring up patients’ stuttering on their first visit, but ask respectfully at later visits whether and how it affects their life. “Most persons who stutter are overly sensitive to the reactions they receive from others,” Perez explained.
On a broader scale, the researchers suggest more training to improve medical workers’ sensitivity toward people with disabilities, including those who stutter. Such training should target both professional and nonprofessional workers. According to Perez, the best doctor in the world is of no use to a patient who feels too uncomfortable or afraid to say what’s wrong.
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Perez HR, Doig-Acuña C, Starrels JL (2015 Apr 9). “Not unless it’s a life or death thing”: A qualitative study of the health care experiences of adults who stutter. Journal of General Internal Medicine. http://dx.doi.org/10.1007/s11606-015-3302-x [Epub ahead of print].
Ha JF, Anat DS, Longnecker N (2010 Spring). Doctor-patient communication: A review. The Ochsner Journal, 10(1):38-43. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096184/
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