Psychologist Robert Glueckauf, PhD, was analyzing results of a grant-funded research project testing two different psychological interventions for rural teenagers with epilepsy. He and his colleagues had identified families who had expressed an interest in the project. But to Glueckauf's surprise, only half of the families showed up for their initial assessment.
Why were there so many no-shows? A primary reason given by the families, especially those living in rural areas, was the inconvenience and high cost of transportation to Glueckauf's office at Indiana University-Purdue University Indianapolis (IUPUI). This is indicative of the many access problems that routinely challenge the 12.5 million rural Americans with disabilities and their families. Some other problems include lack of access to housing, employment and health and wellness facilities.
Rural communities are often poor and have fewer residents to tax, which results in insufficient health and social services at the local level. As a result, specialized mental health programs are virtually nonexistent in many remote areas. The rural families in Glueckauf's study, for example, traveled 50 miles or more for the rare opportunity to get specialized epilepsy help.
But Glueckauf and other psychologists, such as community psychologist Tom Seekins, PhD, at the University of Montana, are beginning to tackle these problems, which Seekins says too often lead to feelings of isolation among the rural disabled. They're investigating how to give rural people with disabilities better access to mental health care, through telehealth (see Telehealth) and other alternatives, such as peer support via telephone and health promotion programs designed for disabled people in rural areas.
"That [research] dilemma, that issue of access or the lack of access to our project because of transportation, became the 'raison d'etre' of our first telehealth intervention program," says Glueckauf, who now heads the University of Florida Center for Research on Telehealth and Healthcare Communications (CRTHC) in Gainesville, where he is completing the telehealth research begun at IUPUI.
Glueckauf and his team at the University of Florida's CRTHC wanted to be sure to get the necessary services to teenagers with epilepsy who experience seizures because they are at greater risk for developing psychological and academic problems than are other teenagers--those with and without other chronic conditions.
Since the family counseling that has been shown to help is in particularly short supply in rural areas, the team is testing the efficacy of videoconferencing in those communities. Their ongoing three-part study, sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR) involves more than 75 families in five Midwestern states and three Southeastern states.
In the first Midwestern phase of the study, published in Rehabilitation Psychology (Vol. 47, No. 1), they found that family counseling delivered by interactive videoconferencing, by speakerphone or in an office setting all produced similar positive results.
"We found equivalent and positive gains in problem improvement and prosocial behavior of the rural teens with epilepsy from pre- to post-treatment and at the six-month follow-up," Glueckauf says. But though the initial findings look promising, Glueckauf remains cautious. "The truth is that it is too early to render a definitive judgment about the efficacy and cost-effectiveness of telehealth for meeting the health-care needs of individuals with chronic disabilities," he says. He expects phase two of the study, a replication of phase one using Southeastern families, to yield similar findings, "but that remains to be seen."
Also doing research on telehealth is clinical psychologist Ron Breazeale, PhD, who has his own practice, Axiom Associates, in Knoxville, Tenn. His project, "Overcoming Disability: Increasing Access to Medical Services for Persons with a Disability Through Peer Coaching," is scheduled to begin next fall. Like Glueckauf, Breazeale is seeking alternative ways to give rural people with disabilities access to mental health care. His project will evaluate whether peer coaching--a staple of rehabilitation programs and independent living centers since the 1970s--delivered by technology can increase disabled people's ability to navigate the complex health-care system and improve their compliance with health providers' recommendations.
"Those disabled by chronic illness may find it difficult to obtain adequate care from a health-care system that is based upon the acute-care model," explains Breazeale--who says being born without a left hand partly inspired his interest in disability research. "Those with mobility problems often have limited access to transportation and may live in areas where geography and weather place additional limits on access."
Using the Internet and telephone, participants from rural Maine will be matched with peer coaches with similar disabilities from around the country.
"A system of enhanced peer support and peer coaching, delivered through accessible electronic technologies, holds the promise of increasing access to medical services and decreasing the cost for health-care and rehabilitation services," he says.
Meanwhile, Tom Seekins and his colleagues at the University of Montana's NIDRR-sponsored Research and Training Center on Disability in Rural Communities (RTC:Rural) are working to improve the health of rural people with disabilities by increasing their participation in wellness activities.
For example, RTC:Rural's "Living Well with a Disability"--sponsored by the Office on Disability and Health at the U.S. Centers for Disease Control and Prevention--focuses on helping people with physical disabilities develop healthy lifestyles that will reduce their chances of developing secondary conditions--such as urinary tract infection.
By having participants attend eight weekly two-hour sessions, the program minimizes the isolation experienced by many rural, disabled people. RTC:Rural also arranges transportation for workshop participants who need it.
Participants start the program by identifying why they want to be well. One participant cited "being able to play with my grandchild," as her reason for wanting to become healthier.
"Most of us practice healthy living when we have meaningful activities we want to do," Seekins says.
In other sessions, participants develop tools and skills for healthy living. They learn about healthy reactions and communication, managing depression, gathering information, physical fitness, nutrition and self-advocacy.
Progress reports for the ongoing project suggest that the "Living Well" intervention works. It paid for itself within the first six months of implementation because, by leading healthier lifestyles, participants decreased costs associated with their medical visits. In fact, if implemented nationwide, Seekins and colleagues estimate that the program could save $31 million in annual health-care costs.
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