Nov 7, 2022 | Advocacy, Community, Grief, Research
It was the beginning of her junior year at the University of South Carolina (UofSC) when Mairead Peters’ cousin unexpectedly passed away. Not only was Peters just getting settled into her new class schedule, she was now forced to navigate the school year while wading through the shock and pain of her grief.
The following semester, Peters also experienced the death of her father.
Despite losing two loved ones in such a short period of time, Peters decided to continue her studies, hoping college could serve as a distraction to the grief she now carried. To help her through this journey, Peters sought resources at her university, but found none were available.
“I had to be my own advocate and try to search for other people like me,” says Peters. “There weren’t really any groups offered at my college, and so I just had to rely on my own friends and support group, which I was fortunate enough to have. But a lot of people don’t have that. I went to a big school, and the fact that they didn’t have some type of support group already in place was pretty shocking to me.”
Peters is not alone in her experience, as recent research indicates that 25 and 30 percent of college students, if not more, experience the death of a family member or close friend in a given year. In the span of two years, that percentage rises to 40, according to several 2020 studies conducted by Dr. Chye Hong Liew and Dr. Heather L. Servaty-Seib of Purdue University West Lafayette.
After experiencing the death of someone close to them, students must not only navigate their grief, but also continue on with their studies if they decide to remain in school, in which case, according to Dr. Liew and Dr. Servaty-Seib’s work, students become more at risk of poor academic performance, lower semester GPAs, and possibly withdrawing from enrollment compared to students who have not experienced a loss. Even so, few college campuses in the United States have instituted adequate bereavement-leave policies to protect grieving students and their academic success. Unlike working adults, students attending a college or university are not able to take time away from school — often because they will miss lectures, labs, or exams. Without specific policies in place, professors are provided the ultimate discretion in the treatment of absences, even for students who are recently bereaved.
“Students who are believed and supported in their grief will be more engaged both while they are students and when they transition to alumni,” Dr. Servaty-Seib wrote in an email. “If we are truly committed to our students’ academic, professional, and holistic growth and development, we must create structures that facilitate rather than hinder their success.”
Purdue University has been addressing the needs of grieving students since 2011, when a bereavement policy — only the second in the country at the time — was enacted by the university faculty senate. The Grief Absence Policy for Students (GAPS) protects university students and their ability to make up coursework after experiencing the death of a loved one or friend.
The Purdue policy outlines qualifying requirements about the relation of the student to the deceased, the number of leave days allowed, and the additional absences afforded to students for travel considerations. Students can also petition for leave for the death of a family member or friend in the event that their situation is not explicitly covered by the policy.
When a student wants to request leave under GAPS, they first fill out an online form through the Office of the Dean of Students (ODOS) to report the death. After completing a report, the student’s instructors are notified of their absence. Upon receipt of either an obituary or a card from the memorial service following the student’s leave, the ODOS counselor sends an official notification to the instructors.
“At a minimum, students should receive the same assurance that employees have in terms of their ability to take days away for bereavement leave,” Dr. Servaty-Seib wrote. “Here at Purdue, our advocacy did begin with looking at the standard bereavement policy for employees.”
Drawing from the Purdue Paid Bereavement Leave policy for employees and the student bereavement policy at Ball State University — the only other known policy at the time — the Purdue Student Government (PSG) began drafting a resolution for a bereavement policy for students in 2010.
Before meeting with members of the faculty senate, Brad Krites, then president of PSG, leveraged his relationships with the Purdue student newspaper, The Exponent, to call for the publication of articles that featured grieving students who had fallen through the cracks created by the absence of a bereavement policy. The paper also published editorials championing support for the proposal.
After approval of the resolution by the university student senate, Krites introduced the proposal before the faculty senate. One month later, in March 2011, the resolution was overwhelmingly approved by the university faculty senate.
According to Dr. Servaty-Seib, the policy was a success, largely because it addressed the faculty concerns about consistency in applying the policy, validation of the death information submitted by students, and assurance that the process wouldn’t require more of their time.
Although the policy has been in place for 11 years now, research conducted by Hannah Darr, a student of Dr. Servaty-Seib revealed that only 11 percent of students were aware of the policy and knew how to use it, while 26 percent had never heard about the policy.
Students who were aware of the policy said they learned about it through faculty members and orientation programs. Students who were eligible to utilize the policy but didn’t said this was either due to lack of awareness or concerns about compromising their academic standing.
The study also found that Black and brown students were even less likely to know about, and less likely to utilize, the Purdue student bereavement policy, despite experiencing a much greater number of deaths while in college.
Dr. Servaty-Seib offers that Black and brown students may feel less comfortable communicating about their losses with campus faculty and staff based on prior, unfavorable campus experiences.
“They may not want to share their business for fear it will come back around and be used against them,” Dr. Servaty-Seib wrote. “These students may not trust that faculty will offer them the ability to make up work, or if they do allow it, will see them as asking for extra assistance rather than it being their right.”
Sydney Rains, vice president of the student body association and a senior at Gonzaga University (GU), is working to fill this bereavement policy gap at her university. Rains began to push for a similar bill after her own experience with the death of a loved one that irrevocably altered the final months of her junior year.
Rains and her father share a tattoo.
In an interview with GU’s student newspaper, The Gonzaga Bulletin, Rains explains that after she experienced the death of her father, she felt a lack of care and support from her university.
“The experience I had coming back to school was much different than what I expected it to be at a small, intimate institution that is very much looked up to in their mental health aspects,” Rains told The Bulletin. “I think that, at a school where we talk so much about caring for the whole person, it’s essential to live up to that promise by providing structure and support for students during times of tremendous loss.”
Less than two weeks after the death of her father, Rains returned to class, working feverishly to complete assignments she had missed during her absence.
Rains with her father during a track event.
“That point was when I was really starting to feel the drive to pursue a bereavement policy because my experience was just so exhausting,” Rains told The Bulletin. “It’s heartbreaking to think of other students having to go through the same situation that I did.”
After numerous meetings and conversations with university provosts, deans, and other decision-makers, Rains was able to gain enough support to back a resolution she intends to write and propose to the student body senate.
Her resolution calls for the university to develop a bereavement policy that covers absences and academic deadlines after the death of a loved one. Gonzaga’s administration operates on a shared governance system, comprised of an academic council and faculty senate. After her proposal to the student body senate, Rains plans to consult the faculty senate to get more feedback. The final step will be to present the proposed policy to the academic council, where members will vote to determine if such a policy will be developed.
Although these two universities are working toward student bereavement equity, Dr. Servaty-Seib says every institution should consider its own culture and general approach to bereavement when exploring the implementation of such a policy.
In an article published in the Journal of College Student Development, Dr. Servaty-Seib and Dr. Liew advise colleges and universities seeking their own student bereavement policy to look to existing faculty and staff policies for guidance, engage with key faculty leaders and administrators, use the media to generate awareness, and perhaps most importantly, involve students and their stories.
“The most compelling and convincing voice for a student-focused policy like a student bereavement policy may be a student,” writes Dr. Servaty-Seib. “If grieving students are open to sharing their stories and challenges, consider including them in the process. Their words can be powerful, and they may appreciate the opportunity to make a difference through advocating for future grieving students.”
Oct 31, 2022 | Data Collection, Family, Grief, Parent, Research
Earlier this month, Evermore hosted a conversation with Dr. Emily Smith-Greenaway, a grief and bereavement researcher in California and associate professor of sociology and spatial sciences at the University of Southern California, to discuss her research on bereaved people and her work on the COVID-19 bereavement multiplier.
The bereavement multiplier is a tool used to track how many people have been directly impacted by a COVID-19 death. According to research findings from Dr. Smith-Greenaway, on average, for every death due to COVID-19, approximately nine people have been or will be bereaved. With more than 1 million Americans having died of COVID-19 thus far, that leaves approximately more than 9 million people bereft.
“This multiplier [tool] allows us to really track how many bereavement events there have been in the midst of an ongoing mortality crisis,” says Dr. Smith-Greenaway. “This gives us a really different scale of the height of this mortality crisis by emphasizing how many people have been intimately affected by COVID mortality.”
While the Centers for Disease Control and Prevention measures deaths in the United States, it doesn’t measure how many people are impacted by those deaths. Dr. Smith-Greenaway’s multiplier tool therefore offers an important and useful way to begin to understand the scale and impact of bereavement in this country.
“We can absolutely extend this approach to other causes of death,” says Smith-Greenaway. “What I think is so useful about that is that I expect there will be inversions sometimes – how some less common causes of death may still have an outsized effect in terms of bereavement. It’s a tool we can absolutely use to really get a sense of the lingering effects of certain mortality crises the U.S. is facing beyond COVID.”
Dr. Smith-Greenaway’s research also examines the ways in which social inequality intersects with mortality and how those disparities affect the experience of survivors, at an international scale.
“Inequality and mortality conditions also mean inequality in access to kin and social support and this really unequal burden of bereavement that we see playing out across the globe,” says Dr. Smith-Greenaway.
Dr. Smith-Greenaway’s work found that younger people are disproportionately impacted by COVID-19 deaths.
“Really early in the pandemic, the narrative was that this mortality shock was disproportionately affecting older adults,” says Smith-Greenaway. “We see actually it’s younger people who are bearing the brunt of these losses because they’re disproportionately losing grandparents and parents.”
https:///youtu.be/tmUx2tj6TcA
In a study that followed a group of young children from birth through adolescence, Dr. Smith-Greenaway found that the death of a maternal grandparent played a significant role in the academic success of young boys. Data showed that boys who lost a grandparent earlier on in life – between the ages of five and nine – are significantly more vulnerable to lowered cognitive skills for reading comprehension and verbal and math ability.
“This is really striking because developing these skills on time is really important for youths’ subsequent academic skills and their subsequent behavioral outcomes and academic outcomes,” says Dr. Smith-Greenaway. “Interestingly, we’re not finding anything in terms of young girls.”
Dr. Smith-Greenaway surmises this disparity is a product of the way we typically socialize boys into muting their grief. This type of socialization could be the direct cause as to why research points to these disadvantages in academic skills.
According to Dr. Smith-Greenaway, it’s the impact of bereavement on boys from historically marginalized communities that are really driving the effects seen in the data. Non-Hispanic Black boys and Hispanic boys showed significant impacts to their verbal, math, and reading abilities after experiencing the death of a grandparent between the ages of five and nine.
Dr. Smith-Greenaway’s work also found that Black and Hispanic boys suffered from more severe depressive systems when compared to their white peers after the death of a grandparent.
“There’s also work emphasizing how racial minority boys, in particular, tend to have this ‘suffocated grief,’” says Dr. Smith-Greenaway. “Their grief is viewed as just bad behavior, or acting out, rather than acknowledging that it’s just their very normal reaction to a loss.”
In a global study on the deaths of children under five, Dr. Smith-Greenaway discovered some monumental disparities, not only in child loss, but also in the impact of those losses on mothers. This study found that 30 to 40 percent of sub-Saharan African mothers between the ages of 20 and 44, have experienced the loss of a child – a number that increases to 50 to 60 percent for women ages 45 to 49.
Dr. Smith-Greenaway’s work highlighted striking inequalities in child loss between women in African countries compared to women in other countries. For this research, Smith-Greenaway looked at demographic and health survey data spanning more than 20 years for mothers of multiple age groups in 20 sub-Saharan African countries.
While many initiatives have focused on the disparities in infant mortality between white and African communities, the disparity is even greater when looking at mortality in children.
“In some sub-Saharan African countries, it’s more common to have witnessed a child die than it is to have witnessed all of your children survive beyond the age of five,” says Smith-Greenaway. “This work is trying to attend to the fact that losing a child is this underappreciated dimension of global health inequality that manifests in womens’ lives.”
Dr. Smith-Greenaway’s work also uncovered yet another trend associated with child mortality – intimate partner violence (IPV). In a 2020 study, Dr. Smith-Greenaway concluded that child loss corresponds with a higher risk of intimate partner violence in a number of sub-Saharan African countries. The increase was found, somewhat surprisingly, not in communities where child death was more common, but in communities where it was both less likely and where there was greater parity in education between genders.
Although there is nothing in the data to explain why this increase in IPV exists, Dr. Smith-Greenaway suspects it could be a result of maternal blame for the death of the child.
“It suggests that maybe where child loss isn’t as expected, there’s less of a support system in place for when you do lose a child because it’s just a less common experience in the community,” says Smith Greenaway. “We do see that that comes with an outsized risk of IPV.”
Here in the US, in 2020, the most recent year data is available, the CDC recorded more than 3.4 million deaths in the United States, the most on record. That leaves more than 30 million people in the U.S. recently bereaved, yet the death of a loved one and its implications most often remain invisible.
Thanks to research like Dr. Smith-Greenaway’s, which you can learn more about here, Americans can begin to understand the global breadth of bereavement, and we can establish an increased awareness of these issues so that families may find support when they need it more than ever.
This is why, at Evermore, we work every day to raise awareness and develop our nation’s bereavement care systems. Our work centers around evidence-driven advocacy for the bereaved children and families because no one should be left to bare knuckle their way through the aftermath alone. With millions impacted domestically and around the globe, we can – and should – do more to help our friends, families, and communities.
Oct 4, 2022 | Advocacy, Data Collection, Family, FMLA, Research
As many as half of all pregnancies end in miscarriage. Even though 87 percent of women have experienced a miscarriage while employed, an alarming number of women aren’t aware that the Family Medical Leave Act (FMLA) allows for time off from work after a miscarriage and stillbirth.
These were the findings from a survey conducted by InHerSight in partnership with Evermore. InHerSight uses data to help women find employers and companies that support women’s goals and needs. This survey, conducted earlier this year, included 1,300 women, with the goal of assessing their awareness of their right to time off work under FMLA after experiencing a miscarriage or stillbirth.
Survey results were striking, with 77 percent of respondents indicating they were unaware they had access to this protection. Sixty-six percent of these women reported that they hadn’t been informed by their employer of their legal rights regarding leave under FMLA, which guarantees up to 12 weeks of unpaid leave if the employee is unable to work because of his or her own “serious health condition.”
While miscarriage and stillbirth are not specifically included in the definition of “serious health condition” in FMLA, Department of Labor statements and other legislative documents indicate miscarriage is covered by the policy. A woman whose pregnancy ends in miscarriage should be able to use FMLA leave if she’s unable to work due to physical recovery or emotional distress.
Even so, 91 percent of women who have experienced a miscarriage or stillbirth while employed reported taking no days off work to recover. Ninety-eight percent of the women surveyed reported not filing for leave under FMLA after experiencing a miscarriage or stillbirth. [Read more about InHerSight’s findings here.]
“Knowing federal leave benefits should not be the responsibility of a newly grieving woman or family. Employers have a tremendous opportunity to provide a supportive workplace environment by ensuring that women are aware of their rights.”
As Evermore seeks to learn more about the realities of bereavement in the United States, and the impact of those realities, partners like InHerSight play a crucial role in gathering data and identifying areas in need of policy change and community support. Evermore partnered with InHerSight for this survey because of the company’s dedication to women employees and their benefits and well-being in the workplace.
“Partners like InHerSight are critical in facilitating transformational social policy,” Mulheron says. “Bereavement is ubiquitous. Understanding the impact, collecting data on the family’s perspective, and then shining a spotlight on those experiences requires leadership. We are grateful to InHerSight and others who are advancing bereavement care in America.”
The findings from this survey indicate how important it is for workplaces to provide effective education and communication that cultivates a supportive environment for employees experiencing bereavement. At Evermore, we believe it is crucial that employers take greater initiative to inform their employees of the benefits and protections available to them.
Benefits should be communicated through employee handbooks, during onboarding and orientation trainings, and throughout the duration of a worker’s employment. When the time comes for employees to exercise their benefits, employers should be prepared to guide them through the process and direct them to human resources (HR) for further assistance.
Employers must also work hard to create a culture in which people can bring personal and emotionally challenging issues to their directors, managers, and HR personnel. To further support an inclusive workplace culture, Evermore also recommends that employers institute five days of paid bereavement leave for all employees.
“According to the Department of Labor, only 56 percent of America’s workforce qualifies for FMLA benefits,” Mulheron says. “That leaves millions of women working in the gig economy, in small employers, or as solopreneurs who have no benefit at all.”
In 2021, Senator Tammy Duckworth (D-IL) and Congresswoman Ayanna Pressley (D-MA) introduced legislation that aims to raise awareness about pregnancy loss and provide paid leave benefits for workers experiencing the pain of a miscarriage or stillbirth. The Support Through Loss Act supports bereaved workers by increasing access to workplace supports and access to resources and adequate care.
“Pregnancy loss should be met with care, compassion, and support. It is a common experience, but many struggle in silence due to the lack of awareness and cultural stigma,” says Pressley in a press release detailing the legislation. “Our bill sends a message to families that they are not alone.”
It is also imperative that employees know how to advocate for themselves in order to access the benefits available to them. If you are unaware of the benefits at your workplace, ask your manager or an HR representative to guide you through company policy. Evermore encourages readers to communicate their knowledge with coworkers, improve awareness in the workplace, and work together to create a workplace where benefits are a continuous topic of conversation.
Sep 26, 2022 | Advocacy, Data Collection, Research
Earlier this month, Evermore hosted a conversation with Toni Miles, M.D., Ph.D., a grief and bereavement researcher in Georgia and Morehouse School of Medicine adjunct professor, to discuss the Centers for Disease Control and Prevention’s (CDC) Behavioral Risk Factor Surveillance System (BRFSS) — a health-related survey of adults that measures certain behaviors, such as seatbelt use, smoking, and substance use. [Watch the full conversation here.]
While the BRFSS asks a number of questions about physical and mental health, one thing it doesn’t measure is adult experiences with the death of loved ones and family members. “We count dead people, but we do not count the people who are left behind,” says Miles. “We can’t see bereavement because we don’t count it.”
In a quest to discover the population health effects of death in her home state, Miles conducted a field study in 2019 that piloted three bereavement exposure questions in Georgia’s BRFSS.
As part of her study, Miles asked participants if: 1) they had experienced a death event in the past two years, 2) how many deaths they had experienced, and 3) their relationship to the individual who was lost. The data she collected was striking. [/vc_column_text][vc_video link=”https:///www.youtube.com/watch?v=vRi8AUTzTyo”][vc_column_text]Miles’ work found that, pre-COVID, 45 percent of Georgia adults surveyed had experienced death in the previous two years — with 400,000 people experiencing two or more deaths in that time period. Extrapolating these findings to the overall state population, Miles estimates that 3.7 million adults, out of Georgia’s 8.1 million residents, were recently bereaved.
The survey also revealed a disproportionate burden on African Americans in Georgia, with 58 percent of respondents reporting the death of a loved one.
The survivors of these death events are, themselves, at risk for poor physical health outcomes, premature death, and other adverse consequences that can alter their life course. Miles’ work found that Georgia adults experiencing a family death were at a higher risk of mental health problems, an undermined capacity to work, and binge drinking.
Distinguished researcher and bereavement expert Dr. Toni Miles
“We always talk anecdotally about how bereavement makes people sick — so and so died of a broken heart — but you don’t have the data to make that connection,” says Miles. “BRFSS allows us to make that connection.”
Evermore hopes that more states will add these three bereavement exposure questions to their BRFSS population research because collecting data on bereaved residents could help Americans understand the associated impacts of bereavement and inform and bolster policy on bereavement care.
In 2021, Evermore leveraged Miles’ work, using the U.S. budget process as a catalyst to advance bereavement epidemiology in the BRFSS (read Evermore’s testimony to the Senate Health Appropriations Subcommittee here). Evermore created this avenue by successfully advocating for appropriations language to the U.S. budget that works to standardize the CDC’s measurement of the three bereavement exposure questions. However, implementation of these provisions is not guaranteed.
This is why it is crucial for Americans to voice their position on this issue. Anyone can contact the BRFSS coordinator in their state to advocate for the inclusion of these three questions in future iterations of their state’s survey. If more states begin to adopt and ask these questions, the CDC is more likely to implement them nationwide.
We encourage readers to identify their local coordinator, call them, and explain why these questions are crucial to bereavement care. This is a universal issue — one that disproportionately impacts communities of color — and now is the time for action.
Sep 13, 2022 | Family, Grief, Research
Experiencing the death of a loved one can be one of the most traumatic and painful experiences someone can face in life. Such losses can be overwhelming, resulting in intense and difficult emotions of sadness, emptiness, shock, and despair.
The bereavement process that conjoins grief — the handling of a loved one’s affairs, the navigation of various systems (medical, law enforcement, government benefits, health care) — only adds to the mental distress many families experiences. [Read about the difference between grief and bereavement.]
But grief and bereavement are far more than emotional or mental health experiences. Both processes, bereavement in particular, also have material and practical impacts that can profoundly affect the quality of life — and lifespan — of someone who is grieving the loss of a spouse, parent, child, or sibling.
“The unexpected death of a loved one poses a dual threat to our national well-being. Before the COVID-19 pandemic, Americans reported unexpected deaths to be among the most common major life stressors and the single worst experience of their entire life,” says Evermore founder Joyal Mulheron. “Losing a loved one is not only a personal tragedy, but it casts a long shadow that can extend for decades because it places surviving parents, children, siblings, and spouses at significant risk for impaired health, premature death, and other disadvantages.”
We know that individuals who lose a family member, in particular, are at higher risk of premature death as a result of their loss (when compared to non-bereaved people). This is a medical outcome — not merely a mental health outcome — and one that can and should be prevented.
In a recent study from David Weaver of the University of South Carolina, it was concluded that in the United States today, an estimated two million children under the age of 18 have a mother or father who has died. Other rigorous population-level studies have found that when compared to non-bereaved children, bereaved children experience lower self-esteem, heightened risk of depression, suicide attempts, suicide, and premature death due to any cause.
We know that bereavement is also associated with decreased academic attainment, increased violence and crime, incarceration, self-harm, suicide attempts and completions, and with substance abuse and psychiatric disorders. So, while bereavement does cause mental distress, it also becomes the precipitating event for other emergencies that decrease the health, social, and economic well-being of an individual.
Findings from a research study conducted by Jason Fletcher of Yale University and Marsha Mailick, Jieun Song, and Barbara Wolfe of the University of Wisconsin–Madison concluded that females who have lost a sibling are at increased risk of completing fewer years of school, dropping out of high school, becoming pregnant as a teen, not attending college, and have an average reduction in income of 20 percent.
Bereavement magnifies existing racial inequities. For example, the Indian Health Service reports that American Indians and Alaskan Natives born today will live 5.5 years less than other racial groups in U.S. As a result, families will experience these deaths earlier in life and encounter associated hardships, only compounding and multiplying the impact of bereavement.
Black Americans are also disproportionately impacted by the premature deaths of loved ones. Across the life course, they are three times as likely as White Americans to have two or more family members die by the time they reach the age of 30 — making these communities more vulnerable to negative social and health outcomes for the rest of their lives.
The systems surrounding a grieving and bereaved family should be oriented toward preventing the onset of addiction, disease, or even death for surviving family members, but also preventing other associated health and social outcomes.
Let’s consider the real-world implications of just a single death…
When Alex — a husband, father, and sole income-earner in the family — passes away as the result of an accident, his spouse Bianca is immediately confronted with a slew of practical considerations.
She must make and pay for funeral arrangements, but she no longer has the support of Alex’s income. She’s also on the verge of losing the health care provided by Alex’s employer — for her and her eight-year-old daughter.
Bianca now needs to find a job — while grieving — but may have to work evenings and miss the end of the school day for her eight-year-old daughter Marcella, who is in a state of shock, confusion, and trauma after learning her father won’t be coming home.
Moreover, Marcella doesn’t want to get out of bed, is missing school, and her grades are beginning to decline, for the first time since she started school.
Without Alex’s income, suddenly housing, food, transportation, and health care are all on the line — all at once. This is more than grief. This is a family catastrophe.
This is why people don’t only need support with the emotional side of loss, they also need social and practical support in continuing to live their lives — to pay bills, go to work, provide child care, seek appropriate benefits, navigate burial and funeral plans, and so on.
As a society, we need to change and create policies so children and families can better cope with the instability they face in the aftermath of a death. These policies should be based on quality research and data [see our Facts & Figures] and provide economic support, access to quality health care, and meaningful community support programs for all children and families.
We cannot only attend to families alone, however. We must provide education and resources for our frontline responders who attend to families in the aftermath of a death. This includes first responders — paramedics, firefighters, or law enforcement — employers, clergy, or schools. We need to equip our community leaders with the tools to help stabilize children and families.
This is why our work is centered around advocacy — to The White House and the U.S. Congress. And why we work to educate as many people as possible about the real and numerous impacts grieving and bereaved people experience in this country. And this is why your voice matters too. Join our advocacy network in advancing bereavement care for all.
Resources & Related Reading
Bereavement Facts & Figures
Why is our nation so far behind in grief and bereavement services and policies?
Just How Many People in America Have Lost a Loved One?
The epidemiology of traumatic event exposure worldwide: results from the World Mental Health
Survey Consortium, Benjet et al, 2016.
Parental Mortality and Outcomes among Minor and Adult Children, David Weaver, November 2019
A Sibling Death in the Family: Common and Consequential, Fletcher et al, January 2015.
Sep 6, 2022 | COVID, Data Collection, Federal Government, Grief, Research
Just How Many People In America Have Lost A Loved One?
The Centers for Disease Control and Prevention (CDC) is one of the nation’s most-trusted, science-based sources of data on public health in the United States. For more than 70 years, this government agency has been monitoring the nation’s health landscape and providing guidance to the public on how to prevent and respond to health threats. It collects myraids of data on national health trends, including mortality rates related to homicide, suicide, substance misuse, maternal mortality, accidents, and more. Yet, while it collects how we die, it does not collect who survives these deaths and what the implications are.
With concurrent mortality epidemics touching every neighborhood in America, millions of people have experienced the death of a family or friend, but exactly how many people are impacted? We don’t know. What adverse outcomes do people experience in the aftermath of death? We have to look to academia or to other international registries to better understand the ramifications of losing someone meaningful.
“We all know the saying, ‘what gets measured, gets done,’” says Evermore founder Joyal Mulheron. “Bereavement is a public health concern hiding in plain sight simply because we are not measuring the scale or impact that losing loved ones has on our society.”
For example, to understand how many people have been impacted by COVID-19, we can look at the findings from a research study conducted by Ashton Verdery of Pennsylvania State University, Emily Smith-Greenaway of the University of California at Los Angeles, and Rachel Margolis of the University of Western Ontario. They find that for every one COVID-19 death, approximately nine survivors were impacted by the loss of a grandparent, parent, sibling, spouse, or child. But the study’s authors suggest that this is actually a significant underestimate, and likely more individuals are impacted, on average, by a single death. We also know that family survivors are more at risk for poor physical health outcomes, premature death, and other adverse consequences that can alter their life course.
For COVID-19 alone, more than 9 million individuals lost a loved one to COVID-19, including an estimated 78,000 children who lost a parent. This indicates that a significant portion of the population has been impacted by not only loss and grief, but in many cases by the loss of income and health care benefits (if the deceased individual contributed to household earnings and held a job with insurance). This is why we need sound data collection — to provide a clear picture of the impact in order to shape a federal response.
In order to develop sound policies and practices for supporting loved ones after a death event, our nation requires consistent and reliable data on the prevalence and consequences of death and bereavement. We need to know how many people are impacted by different types of death epidemics so we can see a more accurate picture of the true impact.
“When we lose someone meaningful in our life, it can irrevocably alter our health and our social and economic stability for years, decades, and in some cases, impact our well-being for the rest of our lives,” says Mulheron. “The more we know, the more we can help children and families.”
Collecting statistics on bereaved children, parents, siblings, and spouses could help Americans better understand the associated outcomes and impacts, such as housing and food insecurity, health care coverage loss, educational hardship, incarceration, substance use, suicide attempts, and premature death. These statistics are also crucial in helping us better understand what can be done to support bereaved people.
TONI P. MILES, MD, PHD
In 2021, Evermore made legislative strides, using the U.S. budget process as a vehicle to advance CDC data collection. Using work piloted by Toni Miles, M.D., PhD, formerly of the University of Georgia, Evermore advocated for the inclusion of bereavement epidemiology in CDC’s Behavioral Risk Factor Surveillance Survey (BRFSS). BRFSS is the nation’s premier survey tool to collect data from 400,000 adults living in the 50 states, the District of Columbia, and three U.S. territories. It is the largest continuously conducted health survey in the world.
Dr. Miles’ work preceded the COVID-19 pandemic, but found that 45 percent of Georgians — or 3.7 million Georgian residents — were bereaved in the last two years. She found that bereavement disproportionately impacts African American families with 58 percent reporting a recent loss.
“Dr. Miles’ work is very important because it enables policymakers to narrow and focus solutions to help bereaved families,” says Mulheron. “For example, Dr. Miles’ preliminary evidence found that 53 percent of those with a recent loss were out of work. This demonstrates the need for more compassionate employer policies, but also the need for Congress to add death of a loved one as a qualifying event to the Family Medical Leave Act.”
Ultimately, the budget provision passed Congress, but with no funding for CDC to include bereavement as a measurement on BRFSS. In budgetary legislative language, Congress is encouraging CDC to collect bereavement data, but it is an unfunded mandate that CDC is not obligated to follow.
“Still, this is a legislative victory and CDC is beginning to pay attention to bereavement and its impact,” says Mulheron. “As a nation we are beginning to recognize that death is not simply a mental health issue. It creates vast uncertainty for an individual’s health, social, and economic well-being. We will continue to fight for America’s families. It’ll take time, but we will get there.”
Additional resources
Tracking the reach of COVID-19 kin loss with a bereavement multiplier applied to the United States, Ashton Verdery, PhD, Emily Smith-Greenaway, PhD, Rachel Margolis, PhD
Estimates and Projections of COVID-19 and Parental Death in the US, Rachel Kidman, PhD, Rachel Margolis, PhD, Ashton Verdery, PhD, Emily Smith-Greenaway, PhD
Evermore’s Bereavement Facts & Figures
