"The mission of the RRTC is to enhance employment and independent living outcomes for individuals who are blind or visually impaired through research, training, education, and dissemination."
Data was collected from a number of sources including consumers, service providers and vendors of assistive technology. Data from consumers were collected via focus groups, study sample surveys and informal discussions. Data from service providers was collected by informational discussions, and data from vendors of assistive technology was collected by a interview form that was either distributed or conducted at conferences.
Focus Groups
The study included 9 focus groups comprised of older individuals with dual sensory loss. Each focus group included from 3 to 12 individuals and was held at national conferences, such as the American Association of the Deaf-Blind, the American Council of the Blind, the National Federation of the Blind, Hearing Loss Association of America, and at senior service programs, such as the Braille Institute, the Helen Keller National Center Senior Group, and Chestnut Lane, which is an assisted living facility in Oregon that was established exclusively for older individuals who are deaf or deaf-blind. Targeted areas for discussion were formulated based on the research priorities established by NIDRR and recommendations made by the PAR Team. Read More
Each focus group was facilitated by two research staff who had experience conducting focus groups for other research projects. The focus groups were videotaped and comments transcribed. The transcript files were then analyzed by project staff and the PAR Team with the purpose of identifying common themes and concerns that emerged among the wide range of comments offered. Initially, the primary purpose of the focus groups was to assist in the development of the study sample surveys by identifying key areas of consumer concern. However, we realized soon after beginning these focus groups that the information being generated was so qualitatively rich that we decided to continue conducting the focus groups beyond the preliminary stage of the project. Hide
National Study Sample
NIDRR charged the project with developing a nationally representative study sample from which to gather information. In order to approximate a national representative study sample, four variables were considered: age, gender, ethnicity, and geographic area. Age was divided into two groups: the "young-old," representing persons between the ages of 55 and 70 years, and "old-old," representing persons aged 71 years and older. Geographic location was indicated as one of the four areas used for the U.S. Census: Northeast, South, Midwest, and West. The goal was to have a study sample of at least 406 persons who would be representative of the national population. This goal was achieved. Read More
NIDRR further charged the project with investigating issues related to those who lost their vision prior to age 55 and their hearing after age 55 and those who lost their hearing before age 55 and their vision after age 55. The level of sensory loss in both cases was to be severe. This was incredibly challenging as there were several factors that complicated the recruitment efforts. The first was that simply recruiting the study sample took well over a year. We were looking for non-institutionalized persons who fit into the nationally representative areas listed above. The group we were trying to identify has difficulty with community integration and communication, plus we were certain that many were so isolated that it was difficult to get word to them. We were able to recruit a total of 453 persons but they were divided into 4 rather than three groups. Group one included those who were growing older with both vision and hearing loss acquired before the age of 55. The second group were those who acquired both hearing and vision loss after age 55, a group which the researchers believe to be the largest group. The last two groups reflected those that were originally intended for the project, those who lost their vision prior to age 55 and their hearing after age 55, and those who lost their hearing before age 55 and their vision after age 55.
Participants were recruited from various national consumer organizations, and included representatives from Deaf Seniors of America, National Federation of the Blind, American Council for the Blind, Hearing Loss Association of America, Blinded Veteran's Association, American Association of the Deaf-Blind, as well as various community agencies (e.g., Deaf Community Services of San Diego, Braille Institute, Helen Keller National Center, etc.). Announcements regarding the project were placed in national organization newsletters, such as the Blinded Veterans Association newsletter and Deaf-Blind Perspectives. In addition, older individuals on the Helen Keller National Center (HKNC) national deaf-blind registry and the Mississippi State University RRTC National Consumer Feedback Network were contacted and invited to participate. Program managers of the Title VII, Chapter 2 programs of independent living for older blind people were also asked to announce and publicize recruitment efforts, and Regional representatives and affiliates from HKNC also helped to identify and recruit individuals for inclusion in the national study sample.
The recruitment process for this project proved to be far more challenging ‐ and far more time-consuming ‐ than was anticipated. We interpreted this as being consistent with reports that older individuals with dual sensory loss often withdraw from community activities and become isolated. Indeed, when our research team presented at consumer organization meetings, it was not uncommon to hear about certain members who were believed to have developed a secondary sensory impairment, but no one knew for certain because the individuals had stopped attending the organization's activities. Consequently, one limitation of the project's study sample is that those who agreed to participate likely represent individuals who are slightly more outgoing and connected with other individuals than is typical for this group.
A total of 453 individuals, 55 years and older, with dual sensory impairment, agreed to participate in the national study sample. Hide
Interviews and Discussion Groups
During presentations at national and local consumer conferences (e.g., American Association of the Deaf-Blind, Deaf Seniors of America, Hearing Loss Association of America), we had opportunity to ask questions and engage in discussion with members of the audience regarding their perceptions of the service needs of older individuals with dual sensory impairment. As part of the recruiting efforts, the staff operated information tables in Conference Exhibit areas and many people stopped and visited with staff relaying their stories and their concerns. Read More
This was particularly true at Deaf Seniors of American where staff was inundated with people who were struggling with disclosing their newly acquired vision loss to their families - some fearing loss of independence, some not knowing what they would be able to do to cope with the loss, and some for fear of being institutionalized. Similar to our experience with the focus groups, information generated during these informal discussions at conferences yielded valuable data on the audiological rehabilitation service needs of this population from the consumer's perspective. For this reason, we have chosen to include this information at various points in the report. Hide
Reference:
White GW, Suchowierska MA, Campbell M. (2004). Developing and systematically implementing participatory action research. Archives of Physical Medical Rehabilitation. 85, (4, Suppl 2), 3-12.
