Social, economic, and technological changes in the world of health care have shifted more responsibility for medical care into the hands of informal caregivers. These individuals—usually patients' family members or friends—are often asked to play an active role in managing care, performing medical interventions, and dispensing medications, despite the fact that many receive insufficient instruction or support from physicians, nurses, or other formal providers.
In "Coordination Between Formal Providers and Informal Caregivers," (Health Care Management Review, April–June 2007), lead author Dana Beth Weinberg, Ph.D., of Queens College, and researchers R. William Lusenhop, M.S.W., Jody Hoffer Gittel, Ph.D., of Brandeis University, and Cori M. Kautz, M.A., of Abt Associates, explore the coordination between formal providers and informal caregivers. Better communication, they find, prepares caregivers to effectively provide and manage care—leading, in turn, to better outcomes for patients.
In this Commonwealth Fund–supported study, the researchers followed 222 knee-replacement patients at Brigham and Women's Hospital in Boston. This procedure was chosen, say the researchers, because "although the surgery is rather routine and typically successful, patients undergo a care and recovery process that spans multiple settings," making effective communication and coordination critical. Patients were surveyed before and 12 weeks after surgery to assess outcomes. Caregivers were surveyed at six weeks after surgery.
Measuring Communication, Preparation, and OutcomesUsing Gittel's theory of "relational coordination," which suggests successful coordination requires frequent, high-quality communication, shared goals and knowledge, and mutual respect, the researchers developed measures of interaction between caregivers and providers. Caregivers were asked about the frequency and quality of communication, including questions about timeliness, accuracy, and ability to work together to solve problems. They were also asked the degree to which providers knew about the work they did taking care of the patient, shared the caregiver's goals for care, and respected the caregivers.
To measure caregivers' preparation to manage and provide care, they were asked questions related to continuity (e.g., if the results of surgery or the purpose of medications were explained in a way caregivers could understand). Finally, to measure outcomes, patients were surveyed about freedom from pain, functional status, and mental health.
Improving Caregiver Preparation and Patient OutcomesMost caregivers (79%) said surgery and two-thirds (67%) said tests results were explained in a way they could understand. The majority said providers appropriately answered questions (61%) and explained medications (59%). Roughly half said providers told hem about problems related to surgery (52%) and medication side effects (49%) to watch for. The researchers found that such preparation was positively associated with informal caregivers' reports of better relational coordination with the providers. In turn, they found caregiver preparation associated with improved patient outcomes. "Patients whose caregivers reported better preparation had better freedom from pain, functional status, and mental health," the researchers write.
ConclusionsIncreasingly, the provision of health care is shifting from hospitals into homes, with family members and friends playing the role of informal caregivers. Physicians, however, tend to focus on patients, often neglecting the needs of informal caregivers. This study finds that effective coordination and high-quality communication between providers and caregivers can improve caregiver preparation and, ultimately, provide better outcomes for patients. "Providers should be encouraged to attend to the relational work, or interpersonal aspects, of their interactions with caregivers to promote coordination, which may ultimately benefit the patients' health," the authors write.
The current environment of constrained resources, however—because of regulations and reimbursement procedures—have limited providers' ability to develop and maintain relationships with patients, other providers, and caregivers. In addition, long-term relationships with a single practitioner are increasingly being replaced with brief encounters with various providers. Consistently assigning the same providers to patients and caregivers can help to foster a sense of continuity, say the authors, although they concede this is not always possible. Instead, patients and caregivers may be able to develop an ongoing relationship with a provider organization. "In a context of constrained resources and brief encounters, managing task, human, and informational interdependencies requires dedicated resources and support for providers, patients, and caregivers," the authors conclude.
Facts and Figures
- The vast majority of informal caregivers were spouses (79%), followed by children (13%), friends (6%), siblings (2%), and parents (1%).
- Most caregivers reported providers answered questions in a way they could understand (61%) and many
reported that providers explained the purpose of medications the patient would take at home (59%).
- Patients whose caregivers reported better preparation had better freedom from pain, functional status, and mental health.