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Tracking caregivers’ burdens and benefits
America’s health-care industry is being studied hard by lawmakers and lobbyists. What’s not so much being scrutinized is the vast and growing health-care world of family caregivers doing their untrained best in kitchens and bedrooms across the country. Helping them—and the formal medical system they informally collaborate with—is the aim of Crystal Moore, a Skidmore social-work professor, researcher, and consultant for the National Family Caregivers Association and the veterans’ hospital in Albany, N.Y.
Moore explores how communications skills and family dynamics affect the experience and outcomes of doctor’s visits, hospital stays, and home treatments. And she trains people to improve those interpersonal capacities.
In two projects conducted with the NFCA (one of them funded by a $300,000 grant from the US Department of Veterans Affairs), she developed a take-home video and a real-time online tele-class for caregivers. A comparison of client surveys before and after the online session proved that it did change attitudes and boost confidence. Among the communications tips offered and demonstrated: For a successful visit to a doctor, first “establish your presence” by being calm, focused, and assertive to present yourself as a useful member of the care team; offer facts more than opinions; restate what you heard in order to confirm that you’ve interpreted it correctly; identify shared goals and clarify each care provider’s role.
One motive is to help caregivers be seen as more “professional” in the eyes of the professionals. As an interviewee in the video says, “If there’s too much emotion in your voice, doctors may back away.” At the same time, Moore points out, clear communications aren’t just impersonal; they can actually foster empathy as well. Operating on both levels—quasiprofessional and appropriately emotional—isn’t easy, but it is “very trainable,” Moore says. She adds, “Basically, and unfortunately, we’re teaching people to be their own care coordinators, since our health-care market isn’t doing that job.”
When caregivers were surveyed three months after taking Moore’s online training, they still felt more knowledgeable and confident and more likely to practice what she preached, from keeping a journal of symptoms and carrying a list of medications, to engaging their patients in planning their own care and bringing a list of questions to each doctor’s visit. To compare the trainees’ rates of medical utilization with those of an untrained control group, Moore is now crunching the numbers on their patients’ emergency room visits, avoidable hospital admissions, and total health-care expenditures.
In another study, on “caregiver burden,” Moore assessed how family functioning influences the caregiving experience. Working mostly with spouses of elderly patients, she measured four dimensions of caregiving: its effect on one’s mood and emotions, its interference with time needed for oneself or others, whether the patient’s requests are perceived as unreasonable or manipulative, and how fulfilling or rewarding the task feels. She also used a standard form to rate the healthiness of the family’s communications, problem-solving, role definition and accountability, emotional expressiveness, and emotional engagement. Her statistical analyses showed a link between family role problems and a feeling that the patient was unreasonably demanding, and also between healthy family expressions of emotion and a feeling that caregiving is personally fulfilling. Since her study measures family dynamics that are widely regarded as treatable with counseling or therapy, she says, “improving those areas could help caregivers cope with the burdens and also cultivate the satisfactions associated with their responsibilities.”
A social worker as well as a scholar, Moore facilitates monthly discussions with staff at Albany’s VA hospital. Part of the Schwartz Center Rounds (a Boston-based program founded in 1995 to improve doctor-patient relationships), the meetings bring together clinicians from different fields and with different roles to review patient cases or topics with challenging emotional components. So far Moore has led about a dozen such confabs—addressing end-of-life issues, addictions, medical mistakes, and more—and says, “I’ve seen through this process that patients can be humanized and empathy promoted. It’s very powerful. It’s one of the best things I’m involved in right now.”
That is, until her next project to help care providers help patients. —SR