A new research study at West Virginia University is examining formal and informal health networks in rural areas that are serving 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 also interact with a wide variety of health professionals, health institutions, and social agencies over the course of their illnesses.
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.
Joy Buck, Ph.D., R.N., in the WVU School of Nursing based at the University’s Eastern Division in Martinsburg is leading a research team that includes social work and public health professionals, along with WVU medical, nursing, and social work students.
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 with monthly follow-up calls to check in with the study participants on how they are doing and any changes in their condition. 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 on the types of care and services received and learn whether the services were received at home, at their healthcare providers’ offices, in hospitals, or elsewhere to see if they are receiving what they need and prefer,” Dr. Buck said. “It’s been our observation that the transition from one setting to another is often done poorly and that there are gaps in communication among the primary care providers, the specialists, the families, and the patients.”
The researchers have found that many of the symptoms the patients 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 illnesses in rural areas. According to the research team, this study is needed 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.