Addressing the needs of racially and ethnically diverse family caregivers can help reduce the number of unnecessary hospitalizations and improve transitions between care settings, according to new findings by AARP. Researchers Susan C. Reinhard and Rita Choula analyzed qualitative data on Hispanic and African American caregivers in Meeting the Needs of Diverse Family Caregivers.
According to the AARP Public Policy Institute, one in ten caregivers in the U.S. in 2009 were Hispanic, and 11 percent were African American.
An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—like he was from the ‘hood.’
Hispanics told researchers that they always knew they would end up as family caregivers- a cultural tradition. “A number of Hispanic family caregivers said they started caregiving when they were very young. Many, particularly female caregivers, have had years of experience caring for their grandparents, parents, aunts, and uncles,” researchers write. Experience, however, does not make their job any easier, especially when many of the younger family caregivers work and have children of their own.
Language continues to be a barrier to effective communication in hospitals between caregivers and doctors. The researchers note, “In many instances the health care professional delegated responsibility for translating to the family caregiver, who might not have a good understanding of the information being translated in the first place.”
African American caregivers complained of feeling invisible in hospital settings. “Many felt ignored by the hospital staff. Some said doctors, nurses, and social workers often left them out of discussions about their family members, and it was sometimes difficult to get their questions answered,” the researchers write. It is imperative that caregivers remain informed in order to relate information to patients, who are often confused.
The lack of caregiver training can also harm their patients. “For example, family caregivers said they often did not receive sufficient training in administering injections,” the researchers found. “They also reported that they were not formally trained in other areas, such as how to move their family member from the bed to the bathroom, how to change an adult diaper, or how to get the care recipient to walk.”
The study also discovered that racial stereotyping in hospitals arose with disturbing frequency. Sometimes, African American caregivers felt like they had to prove themselves to doctors and hospital staff. “An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—”like he was from the ‘hood,’ ” according to the report.
The study also found that as part of the “new normal,” caregivers provide unpaid contributions of more than 450 billion dollars annually. “Family caregivers are assuming ever- increasing responsibilities for managing health care at a time when the older adult population in the United States is becoming more racially and ethnically diverse,” the researchers write. These responsibilities can include social work, nursing care, and some caregivers even act as patient navigators in hospital settings.
Many caregivers reported feeling unappreciated and ignored. “Despite deep personal and economic investments in the care of their family members, family caregivers report that they seem largely invisible to those who might be able to help them feel more respected and confident in providing care” the researchers write. “And, they say, rarely does anyone ask them how they are doing, what their needs are, and how those needs might be addressed.”
Similarly, The American Psychological Association found that ”Factors such as socio-economic status, familial interdependence, level of acculturation, immigration status, and fear of stigma in response to a disease or physical disability may influence minority group members’ experiences of caregiving.” The association concludes that healthcare professionals need to consider these differences.
Healthcare professionals must work to eliminate any tendency towards racial stereotyping, the APA writes, because stereotypes can lead to errors in judgment about minority groups.
“[B]ecause families of color are often stereotyped as being close-knit and supportive of their kin, social service agencies may not take the time to assess the actual needs of this population. This assumption may lead to less allocation of resources, manpower, and finances for outreach to those communities, which in turn, may help to perpetuate the misconception that they underutilize social services because they are taken care of by their own families,” the APA writes.
AARP researchers maintain that minority caregivers want to learn and will take advantage of available aid. “These family caregivers say they want resources to help them better care for their family members, not someone else to perform the tasks for them. They want more knowledge and confidence, and backup if they need more training and information,” they report concludes. They recommend a 24-hour hotline for caregiving support and training sessions to help family caregivers deliver better care.
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