Article Number: 0637
©Copyright 2000 Quirk's Marketing Research
Review (www.quirks.com). All rights reserved.
December, 2000
Conducting focus groups with disabled respondents
By: Thomas Greenbaum
Editor’s note: Tom Greenbaum is president of
Groups Plus, a research firm based om Fairfield County, CT. He can be reached at 203-858-0516
or at tlg@groupsplus.com.
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.