- During chronic care management and other health episodes, the role of the family caregiver is increasingly recognized and incorporated into care plans. Many healthcare organizations are tapping family members to inform their treatment protocol, and family engagement and education efforts abound.
But what about the family member who is not quite a caregiver? According to a new study from Michigan Medicine at the University of Michigan, these players also require consideration from healthcare providers and policymakers.
“Many patients with chronic health conditions find that involving family and friends in their care provides a crucial source of day-to-day support,” the researchers wrote in the journal Families, Systems and Health. “In previous studies, over 60 percent of adults with diabetes or heart failure report that their family members and friends are regularly involved in their chronic illness self-management.”
Family members aiding chronically ill loved ones differ from formal family caregivers, the researchers said. Many patients managing a chronic condition – diabetes, for example – are fully functional adults who do not need live-in assistance. However, support and aid from family and friends are helpful in managing their health.
“Health supporters may assist with day-to-day decisions about medication and routine symptom management, help coordinate health care among multiple providers, and facilitate healthy behavior changes such as improvements in diet or self-monitoring,” the researchers explained.
But these stakeholders don’t receive enough support from healthcare providers and are limited by healthcare policy. In a survey of about 700 adults who have helped a family or friend manage a chronic illness, 41 percent said they don’t know enough about their loved ones’ health. Only 12 percent said they felt as though they were becoming too involved in their loved ones’ health.
Twenty-nine percent of family supporters said their loved ones’ providers would not answer health-related questions. Another 18 percent said providers did not listen to the concerns of a family supporter.
In-home supporters appeared to receive more recognition from providers than out-of-home supporters. A spouse living with a partner with asthma might receive more information from a provider than a sibling or friend, for example.
Nonetheless, these results raised a red flag to the researchers. One in five family supporters accompany their loved ones to doctor’s appointments and are involved in managing their loved ones’ health. Support recipients are receptive to this level of support, with about half of those surveyed reporting that they share all of their health concerns and desires to be healthy with their supporters.
Specifically, 47 percent of support recipients discussed symptoms with their loved ones, and 32 percent discussed issues paying for medications and treatments.
These results were of note for the researchers, who hailed both from the University of Michigan, University of Pittsburgh, and VA Ann Arbor Healthcare System.
“We were surprised by the extent to which these chronic disease health supporters are able to provide support for key aspects of health care, and the sheer amount of help they provide,” said lead author Aaron A. Lee, PhD, a postdoctoral fellow at the VA CCMR. “But we were also surprised by their concerns about not being involved in their loved ones’ care by health providers.”
Healthcare providers may be hesitant to involve family supporters in treatment because of time constraints or privacy concerns. However, the researchers contend that providers should ask their patients about their family supporters’ level of involvement in care.
HIPAA allows patients to designate individuals who are allowed to know sensitive health information. Additionally, identifying members of patients’ support teams is a key part of patient satisfaction.
In fact, those questions should be a part of routine screening for all patients, the researchers contended.
Ultimately, involving family supporters should be an important part of care management plans for all patients, not just the ones who need extensive in-home support. Family supporters help patients manage their prescriptions and medical appointments, as well as offer love, care, and support during health maintenance.
Research confirms the important role family members play in chronic care management. A 2017 study published in the Journal of the American Thoracic Society found that patients with plenty of social support – friends, family, or spouses – engaged in more healthy behaviors. They took an average of 903 steps more than those without support and were 11 times more likely to engage in pulmonary rehabilitation.
A separate study from the University of Pittsburgh Medical Center (UPMC) found that patients with strong familial support see fewer preventable 30-day readmissions.
When parents, spouses, and adult children became involved in patient care and the discharge process, the likelihood of 90-day readmission decreased by 25 percent, and the likelihood of 180-day readmission was cut by 24 percent.
Healthcare organizations need to identify ways to incorporate family supporters into the care experience. While many health professionals have created training protocol for family members who will be caring for a seriously ill loved one, more efforts need to focus on the family supporter.
The Michigan Medicine researchers suggested asking patients to clarify which individuals they wanted involved in their care. Recognizing all members of the care team, even those supporters who patients decide to include, is essential for adequate care coordination.