Family caregivers of older adults lack support from health care workers
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Although most family caregivers of older adults with activity restrictions said health care workers listened to them and asked if they understood the older adult’s treatments, many were not asked if they needed help managing their care, according to a study published in JAMA Network Open.
“Findings from this study and others suggest benefit to assessing family perspectives in the measurement of care quality,” Jennifer Wolff, PhD, professor in the department of health policy and management at Johns Hopkins University Bloomberg School of Public Health, told Healio Primary Care. “As family caregivers are often heavily involved in the care of persons with diminished capacity to self-report on experiences with care, incorporating family caregiver-reported information may be especially important to ensuring that assessments of care quality incorporate all perspectives.”
To achieve high-quality care, ACP and other professional societies have called on health care workers to develop supportive physician–caregiver relationships, according to the study authors. However, interacting with caregivers can be a challenge for health care workers, “who are responsible for ensuring patient privacy and promoting patient autonomy but are not reimbursed for additional time spent educating or counseling family and unpaid caregivers or nurturing productive partnerships,” they wrote.
To learn more about family and unpaid caregivers’ experiences with health care workers, Wolff and colleagues reviewed data from two nationally representative, population-based studies of older adults and their caregivers. One study included interviews with Medicaid beneficiaries, and the second study surveyed their family or unpaid caregivers on their interactions with health care workers.
A total of 1,203 older adults with activity limitations living in community settings and 1,916 of their family and unpaid caregivers were included in the study.
Among caregivers, 56.3% reported never speaking with the older adult’s caregiver in the previous year, whereas 33% said they sometimes or rarely spoke with them and 10.7% said they contacted them often.
Of those caretakers who reported speaking with health care workers, 70.6% said they were always listened to and 18.2% said they were usually listened to, according to the researchers. More than half (54.4%) of caregivers reported always being asked if they understood the older adult’s treatments and 17.7% were usually asked.
Wolff and colleagues reported that 45% of caregivers were never asked if they needed help managing an older adult’s care. Just 21.3% of caregivers were always asked if they needed help and 6.9% were usually asked.
Compared with caregivers who sometimes or rarely interacted with health care workers, researchers found that those who interacted with health care workers often were more likely to report always or usually being listened to (94.8% vs. 86.9%; P = .004), being asked about their understanding of treatment (80.1% vs. 69.5%; P = .02) and being asked if they needed help (40.8% vs 24.1%; P < .001).
Caregivers of people with dementia were more likely to report that they were always asked if they needed help compared with caregivers of older adults without dementia (26.9% vs. 19%). Still, many caregivers of older adults with and without dementia were never asked (41.2% vs. 46.5%; P = .007).
“Effective psychosocial and coping interventions have been developed to support family caregivers, but they are largely disconnected from routine health care delivery,” Wolff explained. “Our study supports the need for more explicit and systematic identification and support of caregivers in mainstream care to better understand and address their information and support needs.” – by Erin Michael
Disclosures: Wolff reports receiving grants from the National Institute on Aging, in addition to grants funding the study. Please see study for all other authors’ relevant financial disclosures.