Caring for a loved one with a long term, acute, or terminal illness has been common for as long as there has been an individual in need of care. We have watched as the roles of that care has evolved and changed with more men being recognized as caregivers. Studies showing the demographics shifting are just now catching up to the reality that men are caregivers too, and have been for some tim. Societal beliefs like "gender-based roles" have either caused them to be silent about caring for their loved ones, or totally overlooked.
Men are not absent from caregiving roles, but Black Men aren't as visible as others. According to "Breaking Stereotypes: Spotlight On Male Family Caregivers", "40 percent of male caregivers of adults are men-- which equates to 16 million male family caregivers in the United States." Black men make up 13% of that 40% of male caregivers. There's no way to know how limiting those studies are, or how many groups are underrepresented in those studies. For example, excluding trans men and non-binary people who have unique cultural needs. With mental health still facing barriers like stigma, and a lack of participation in medical trials/studies, there can be a shortage of data for Black men who are Mental Health Family Caregivers as well.
As we seek to change the perceptions of Black people in society, healthcare is still a challenge when it comes to addressing the unique needs in our community. Many of the barriers to seeking care are rooted in the history of healthcare for Black People. The Tuskegee trials being one of the horrific examples of exploitation and genocide that targeted Black men in our communities.
Another barrier to seeking health care is the lack of culturally sound healthcare professionals. A low number of Black male doctors create an additional barrier. Imagine having to explain experiencing racism on a daily basis, micro-aggressions at work, or continuous harassment by police officers as you navigate your day, to someone who may not believe racism exists.
According to a study in American Journal of Men's Health "Giving Voice to Black Men: Guidance for Increasing the Likelihood of Having a Usual Source of Care":",
"Black men suffer inequalities in health and health-care outcomes relative to other racial/ethnic groups, requiring well-informed efforts for health promotion. Fewer Black men have a usual source of health care, which may be a contributor to these disparities. Increasing access to and the likelihood of a usual source of care among Black men are important to address health and health-care disparities."
There are additional factors that contribute to risks to health for Black men who are caregivers. The level of stress experienced by mental health caregivers contribute to challenges to their physical, mental, and emotional health. According to a "Caregiver Health" study by Family Caregiver Alliance:
Societal factors can influence men not always speaking openly about their struggles, or needs for support. A study performed by AARP showed that 64% of male caregivers reported they were the primary caregiver for their loved one, with 49% caring for an aging parent, and 13% for a spouse with a long term physical condition that required assistance with (ADL's) Activities of Daily Living.
Searching for data on Black men who are caregivers is a challenge because of the lack of study participants. Data is an important tool in building programs within communities, and when there is a lack of data supporting the need for services for Black communities, in this case Black men who are caregivers, it's difficult to assist in building resources for them.
Other socio-economic factors like household incomes for Black Americans on average is $41,361.00, with the average costs for healthcare for a family being $1,200.00 monthly. With so many disparities amongst Black Americans with health care and insurance, access to quality healthcare is an issue due to affordability and medical bias. Many of the benefits of the Affordable Care Act, were rolled back under the Trump administration, resurrecting the barriers for health care and good health for many within the Black community. Accessibility to quality healthcare is also impacted by the availability of health insurance, as some doctors don't take certain medical insurance and hospitals aren't always located in the communities with the highest population of Black people.
Low wage jobs present challenges to securing quality health insurance because the individual cannot afford to pay for health insurance that will address the whole health of the individual and their family members. Imagine making an average of $7.25 an hour, barely making enough money to pay for your monthly living expenses, and trying to pay for health insurance for just one individual, adding a family is impossible under those circumstances.
The COVID-19 pandemic creates another barrier to care as we watch the number of Black people, who are fatalities of the virus, rise in numbers, and many of those numbers Black men. "By April 21, high-concentration Black communities saw 422,184 confirmed COVID-19 cases and 27,354 deaths, compared to 378,667 cases and 16,203 deaths in low-concentration black counties. The 681 high-concentration black counties account for only about a third of the U.S. population but 53 percent of the cases and 63 percent of the deaths nationally." - The Commonwealth Fund, "COVID-19 More Prevalent, Deadlier in U.S. Counties with Higher Black Populations"
Why would an individual want to go into a hospital for care when they are afraid of being infected by the virus or of doctors not taking the necessary precautions to insure their safety while seeking care? Under "normal" circumstances, caregivers are known to delay seeking care for their own health due to the fear of leaving their loved one in the care of someone they don't know, or a lack of support from family and friends who could offer assistance in the absence of the caregivers. Caregiver mortality is tied to the lack of support and resources.
According to a study, "Giving Voice to Black Men: Guidance for Increasing the Likelihood of Having a Usual Source of Care":
"Blacks and Hispanics are also more likely than whites to receive care in nonoptimal organizational settings (such as emergency rooms) and to lack continuity in health care. Analyses of racial and ethnic differences in access to and the use of health services between 1977 and 1996 show that the black-white gap has not narrowed over time, and the gap between Hispanics and whites has widened (Weinick et al., 2000)."
When a Black man goes in to visit his healthcare provider is what he saying being heard, or is what he's not saying being heard? It's important, due to the shortage of Black male doctors, primary care or general practitioners, that doctors are trained in the cultural influences that increase risk factors for Black men. It's important overall that doctors understand the importance of screening for additional health risks like caregiving, and most importantly Mental Health Family Caregiving. With the increased emotional, mental, and physical strains caregivers experience in those roles, they are predisposed to illnesses like high blood pressure, diabetes, and cardiovascular diseases. It's important to include a thorough screening of individuals coming in for checkups. Imagine the amount of intervention possible for an individual who is pre-screened for being a caregiver. Interventional medicine and therapies would could offer relief before the caregiver is in ill health.
Much has to change in the way of policy, allocation of federal funds in communities that face the greatest barriers to care, along with income inequality. Because of the time required to bring about structural changes to Black communities, there has to be resources that offer relief in the meantime. Those resources can come in the form of mutual aide funds, programs that utilize doctors who donate their time, and services using pop-up medical clinics that can screen and refer those who need additional tests and treatments.
As a community, there is more to be done in the way of acceptance of mental illness being an illness that is real, and sometimes a life long journey for some individuals and their families. Black Caregivers shouldn't feel like they aren't filling a very necessary role. As with any longterm physical illness a village of support is required to thrive. Black Mental Health Family Caregivers need more support and recognition within our communities. More political support when it comes to building policy that positively impacts the mental health and wellbeing of all individuals in our communities.
There is much to be done, and the time is now to get serious about the care and intervention for men who are caregivers, too.
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