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During my PhD, I interviewed deaf people, hard of hearing and deaf project workers, British Sign Language interpreters and doctors. The most challenging group to interview were deaf people. There is a lot of reasons for this.
Sign language is very different to spoken English. It is very visual and relies on facial expressions a lot. The grammar is completely dissimilar from English. There are no conceptual words such as ‘motivation’. Also, some health terms do not exist in sign Language such as ‘cholesterol’. So one key reason for me finding the interviews with deaf people difficult is that they speak a completely different language to me.
It takes at least seven years of training to become a fully qualified BSL interpreter, so during my PhD I only managed to complete BSL Level 1, which means I learned how to spell, introduce myself, colours, animals, family and to describe rooms in my flat. However, that wasn’t nearly enough to conduct lengthy interviews about my research.
Therefore, as I can’t communicate in sign language proficiently, I had to use BSL interpreters to translate. BSL interpreters tend to translate in pairs when the interviews are long (which mine were). This means that there are two extra people in the interview room. On the one hand, as the BSL interpreters are often known to the deaf person, the deaf person might feel more comfortable sharing vital details. On the other hand, it might be that there are just too many people. It might be confusing for the deaf person or it might be overwhelming.
Deaf people also have lower health literacy. Deaf health literacy is generally on the same level as a 8 to 9 year old child. This is due to the fact that a lot of healthcare literature is written at a higher level of understanding than most people have. It should also be noted that deaf individuals are unable to learn about health incidentally from TV or from the radio in the same way that a hearing person might.
During my interview, I ensured that I had no complex jargon, that I used simple grammar, and that I had synonyms prepared for all complex words.
Another reason why interviewing deaf people could be hard is due to attitudes. Deaf people, especially those who are very enmeshed within the deaf community feel a lot of hostility towards the hearing world. Deaf people feel that hearing doctors control their health and that these doctors patronise and discriminate against deaf people.
While doctors may discriminate occasionally, deaf people’s negative views of the doctor’s attitudes also shape the way that deaf people communicate with their doctors or any other hearing people. So unconsciously, deaf people may feel a low confidence and mistrust when communicating with a hearing interviewer. It would be preferable to use a deaf interview known to the deaf person being interviewed. However, this was not possible to do in this particular research. I tried to reassure deaf people about my impartiality from doctors and that I had their best interests at heart.
Recording was something else to think about when interviewing deaf people. It is best to video record as this means gestures and facial expressions are preserved. However, this means having to figure out where to position the cameras and could be costly. I went for the cheaper option of recording BSL interpreters’ voices and asking the BSL interpreters to say out loud which person was speaking to differentiate when transcribing.
I had to remind myself to not pay attention to the tone of the interpreters as they might have put their own spin on what the deaf person was saying, focusing on the core meaning instead. Another possible issue with using a hearing BSL interpreter could be that the interviewer would only communicate with the other hearing person in the room.
I focused specifically on facing the deaf person I was speaking with. I had to say my sentences very clearly (deaf people often lip read so I had to make sure I wasn’t covering mouth), wait for the BSL interpreter to say that, then wait for the deaf person to sign and then listen to the BSL interpreter say what had been signed whilst keeping eye contact with the deaf person all the time.
Another issue in deaf research is about consent. Deaf people often have other needs like physical difficulties or learning disabilities. I tried to ensure that deaf people had given consent fully by presenting them with the information sheet, going through the information sheet at the start together, collecting signed consent forms and also answering any questions that deaf people had about the research.
The fact that the deaf person had a printout meant that they had my contact details and that they could show it to someone else at a later date.
I had never communicated with deaf people before my PhD. So I practised loads. I asked my PhD friends to pretend to be an interviewee so I could refine questions and I did a pilot to see if my questions were clear and how I would lead the interview and the best practice of communicating with deaf people. I found that it helped if I was kind but firm about the questions I wanted to ask, and also it helped if BSL interpreters had seen information sheet and the questions I was going to ask before the interview. I also found that I started to phrase certain questions differently – for some of the questions, I had to give example answers and then put ‘or someone else’ at the end in order to make it clear for deaf people.
I learned a huge deal from working with deaf people. I learned how some deaf people feel closer to their deaf friends and family, whereas that other deaf people are used to communicating with hearing people. Some deaf people understand research and have a good health literacy.
Deaf people vary a great deal in opinions about health technology depending on age, gender, attitudes to hearing people, additional physical and learning difficulties and individual communication preferences. I learned about the problems deaf people experience in different healthcare settings. Lastly, I learned about how deaf people communicate compared to hearing people. It was a huge privilege to be allowed to gain an understanding of the world that deaf people inhibit. I hope I have done this experience justice in my research.
Dr Elizabeth Kaplunov carries out research on healthcare communication in deaf and general populations.
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