MARTINSBURG, W.Va. – A new research study at West Virginia University will determine how well the formal and informal health networks in rural areas serve people with multiple long-term chronic health issues. These individuals often move back and forth from their homes to hospitals and nursing homes for treatment. They interact with a wide variety of health professionals, health institutions and social agencies over the course of their illness.
These transitions become more common and more complex as their conditions worsen, and they approach the end of their lives. With their caregivers’ help, they often struggle to navigate multiple healthcare providers and programs, while experiencing symptoms such as shortness of breath, fatigue and depression. As a result, their quality of life is often poor for many years before they die.
Joy Buck, Ph.D., R.N., a researcher in the WVU School of Nursing based at the University’s Eastern Division in Martinsburg, will lead a team that includes social work and public health professionals and WVU medical, nursing and social work students.
Buck has been working with a community advisory board comprised of representatives from multiple agencies in Berkeley, Jefferson, and Morgan counties. The project, “Building Capacity for Rural Integrative Palliative Care: Bridges to Healthy Transitions,” is funded by a $378,000 grant from the National Institute of Nursing Research, part of the National Institutes of Health.
Volunteers with more than one serious health problem will be recruited over the next several months, and the research team will conduct in-depth interviews. Participants and their caregivers will be followed for about 18 months. Researchers will also talk with nurses, social workers, family members and others involved with the patient’s care to get a well-rounded picture of how well the care is working.
“We want to understand more about what types of care and services they receive — at home, at their healthcare providers’ offices, in hospitals and elsewhere — and see how well it is aligned with what they really need and prefer,” Dr. Buck said. “It’s been our observation that the transition from one setting to another is often done poorly — that there are gaps in communication among the primary care providers, the specialists, the families and the patients.
“We have also found that many of the symptoms they experience are not well managed. The study will provide a more comprehensive understanding of the socio-cultural context of living with and caring for adults with complex chronic illness in rural areas. Such a study is necessary in order to see the true impact of care on patients and identify points where the system can be improved to better serve rural populations.
“We will do monthly follow-up calls to check in with the participants and see how they are doing. If there have been changes in their conditions, we’ll go out and re-interview them,” Buck said.
CONTACT: Kim Fetty, HSC News Service