Editor’s note: Tom Greenbaum is president of Groups Plus, a Wilton, Conn., research firm.
After almost 20 years and more than 3,000 focus groups, I thought I had experienced almost everything in my qualitative research career. That was until I was asked to conduct a series of groups among people with various types of disabilities for a client who was seeking to identify Web-based services they could provide to the 54 million Americans in this target segment.
I have always enjoyed an intellectual challenge in my work, and the possibility of working with blind, deaf and physically handicapped people presented an interesting one. While the topics to be covered were much less complicated than others I have addressed, the approach to conducting focus groups with these segments was the challenge.
How to communicate with deaf people, how to get the blind to interact with each other when they could not see, and how to get the people with severe physical disabilities to be able to do the writing exercises I find to be so integral to much of my focus group process - these were but a few of the issues I had to address.
In preparing for these groups, I talked to as many people as possible who have had experience working with individuals that have various types of disabilities to understand the needs of the people relative to group situations, and to gain an appreciation for the most appropriate way to work with them in a focus group environment. My goal was to fulfill the informational objectives of my client while being very sensitive to the needs of the people in the groups and recognizing that able-bodied people often are not aware of some of the things that must be done to ensure the dignity of respondents with disabilities.
The project is now completed and was extremely successful. The client organization got the information it needed. From my point of view, it was probably the most exciting time in my research career, as I was able to work with these very unique market segments in a way that enabled each of the participants to be an integral part of the group discussion and leave the session feeling very good about their involvement. Importantly, the post-group feedback from the participants was that their dignity was never compromised during the process.
A key objective of this piece is to share with the research community some of what I learned in working with these three market segments. Many of these tips I learned while talking with people before conducting the groups, but several of them were obtained via on-the-job experience as a result of trial and error.
1. Be familiar with the proper terminology when working with various groups of people with disabilities. For example:
- People who are blind, deaf or very hard of hearing do not view themselves as disabled, and do not want to be referred to with this terminology. To them, a person who is disabled is someone with a physical disability that precludes walking, writing, etc.
- People who have disabilities do not want to be referred to as disabled people, but rather people with disabilities. They also do not want to be called handicapped as this has a very negative, derogatory connotation.
- People who are deaf or very hard-of-hearing do not want to be called hearing-impaired. This was considered by some to be the politically appropriate way of referring to them in the early 1990s, but now they want to be referred to as deaf or hard of hearing.
2. The moderator and facility personnel should understand that most people with a disability want to be treated like anybody else, and be considered part of the mainstream.
While there is a tendency to want to do things for the people that would not be offered to the able-bodied community, this tendency should be resisted. It is appropriate to ask them if they require assistance, but only if they seem to want this help. Do not assume that a person is not independent and capable of doing things for themselves even though they have a disability.
3. The moderator should take extra time in the days before the groups to think through how to handle different situations, such as exposing a concept statement to the blind or obtaining written information from people with physical disabilities that preclude them from doing significant writing.
Advanced planning for groups like these is vital to the ultimate success of the effort. The moderator should try and anticipate the types of problems that might occur so that appropriate solutions can be developed.
4. When conducting groups with deaf and hard-of-hearing participants, there are a few very important guidelines that will dramatically help improve the quality of the sessions. Specifically:
- It is important to recruit participants who are able to sign using the standard ASL language. This is better than relying on participants’ ability to read lips, as the evidence suggests that even the best lip readers probably do not get more than about 60-70 percent of the content.
- Hire licensed ASL interpreters to work with you during the groups, so the moderator direction and the interaction of the participants can be converted to the spoken word. To this end, it is advisable to use two interpreters in the group, as often one will be able to understand something that another cannot. Also, simultaneous translation is very difficult and tiring work, and the interpreters will perform more effectively if they are able to spell each other.
- The moderator should talk directly to the deaf person and act as if the interpreter is not there. It is very insulting to a deaf person for the moderator to talk to the interpreter rather than address the individual to which the question is addressed.
- In a deaf and hard-of-hearing group, the ideal arrangement is to have a round table, as this facilitates the participants being able to see each other while signing. With this set up, it is possible to have the type of group interaction one expects to get from traditional focus groups.
- The moderator should avoid the tendency to talk louder when dealing with deaf people. It is a natural reaction, but does not help!
5. When conducting groups with blind people, there are a few key guidelines that need to be followed, such as:
- At the start of the group, it is important to set the stage for the people in the room, in terms of how many people are present, who else is there (i.e., moderator, notetaker, etc.), the existence of the tapes, mirrors, etc.
- It is also important to identify for the blind people if there is food or drink available for them, and where it is in relation to the place they are sitting. With this information, they are normally able to function very well in terms of getting their own sandwiches, snacks or beverages.
- At no time should anyone (moderator or facility personnel) make contact with Seeing Eye dogs that come into the room. While there is a natural tendency to want to talk to or pet the dog, this is not acceptable behavior as the dog is working, and is considered part of the blind individual’s personal space.
- At the beginning of the discussion, it is important to go around the room so that everyone can get the names of the other people. My experience is that most blind people are very skilled in remembering who is in the room, and generally will be able to identify the person by name after hearing the voice for the first time.
- Avoid the natural tendency to talk louder to the deaf, as was mentioned previously with the blind participants.
- It is very helpful to direct the group discussion by calling on the people based on their raising hands. Since they cannot see each other, it is difficult to control the conversation so that only one person talks at a time. Therefore, this should be managed by the moderator.
- When presenting material to blind people, it is desirable to read the items to them very slowly so they are able to absorb the material. Then I always ask if they want the information read again, just in case they do not get the information the first time. My experience is that the blind people have an excellent ability to retain spoken material, and should be able to discuss what was presented in great detail with little difficulty, assuming the material is not too complicated and lengthy.
6. There also are a few guidelines associated with conducting groups with people that have physical disabilities. The most important are:
- Ensuring that there is adequate space in the focus group room for their wheelchairs. This might require eliminating all chairs in the room (except those for mobile individuals) and perhaps using a smaller table so that all participants will be able to see the moderator and each other.
- It is very important for the moderator to recognize that some of the people in these groups will react slower than an able-bodied person due to their disability. Therefore, it is important to have patience with the participants, so they can have time to talk or write at their own speed without the moderator cutting them off. This would impact negatively on the entire group and turn the people against the moderator.
- It is also desirable to plan a somewhat reduced agenda for groups with people who have disabilities which could affect their ability to write or speak. This is to provide for the additional time they will require versus what is expected in a traditional focus group.
Extremely rewarding
There definitely is a major difference when conducting focus groups with blind, deaf or people with disabilities. However, if you follow common sense and adhere to the guidelines above, your research should be very successful and probably extremely rewarding to you, your client, and the respondents.