Julie Kaplow, on the left, serves as the Director of the Trauma and Grief Center in Houston, Texas, will be launching the Handle with Care program for children who have witnessed a death.
In August we are focusing on “Back to School” at Evermore. We are giving focus to siblings who have suffered the death of a brother or sister. Returning to school without their siblings can be painful reminder. Being with caring adults and peers who share their experience is extremely important. Bereaved parents are often so devastated by the death of their child, they can’t be there for their surviving children in the way they want to and need to be.
The research makes it clear: For children, bereavement is one of the top reasons they are clinically referred. It’s among the “most distressing life events” for children and adults. What’s more, children who are mourning the death of a family member or friend have a higher risk for depression, substance abuse and other mental or behavioral health problems later in life.
Researcher Julie Kaplow, along with other experts, spell out these facts in a 2018 report that considers a tool used to assess bereavement in youth. The death of a parent, sibling or other relative or friend is a setback for any child, but some children develop unhealthy strategies to cope with the loss. There aren’t enough tools, especially for youth, that clinicians and counselors can use to evaluate whether a child could use extra support.
“We need assessment tools that tell us that this kid is not grieving in a way that’s healthy and we need to find some help,” said Kaplow, considered one of the nation’s top experts and thought leaders on grief and children.
In her many jobs, Kaplow’s work to develop those assessments is part of a multi-pronged approach that she and other researchers are tackling to support traumatized and bereaved children.
Kaplow is director of Texas Children’s Hospital’s Trauma and Grief Center, a Substance Abuse and Mental Health Services Administration-funded center that’s part of the National Child Traumatic Stress Network. The network, which includes 100 sites across the country, aims to raise the standard of care and bolster access to services for traumatized children and their families. The center at Texas Children’s is the only one to focus specifically on grief and bereavement.
Kaplow also serves as chief of psychology at the Houston hospital where she oversees 60 clinical psychologists. And, she is vice chairman for behavioral health at Baylor College of Medicine where she supervises behavioral health initiatives.
Healthy, unhealthy coping
Death is hardly a new topic, but grief and how we cope with it is a newer field of research, especially as it pertains to bereaved children.
“It’s controversial to talk about grief as a psychological problem given that bereavement is a natural part of life,” Kaplow said. “We know that everyone will have to experience a death at some point. We don’t want to pathologize normal grieving. I think there’s been such a push in that direction that it’s been at the expense of recognizing that there are some kids who really do get stuck and who really do need an additional level of support. I think that is what’s hindered the field.”
There are plenty of factors that can help to determine how a child will cope with a death over time, Kaplow said.
“What we know is if children are brought up in a healthy, happy environment, and if somebody dies, those kids, most of the time, will end up still continuing to lead happy, healthy lives,” she said.
“Kids who already bring with them other adverse experiences or a lack of parental support, even before the death, can have more trouble. So can children whose loved one died by homicide or suicide or who are living in poverty or in neighborhoods where violence is the norm,” Kaplow said.
“Maladaptive grieving can manifest in a number of different ways, and that depends on the developmental stage of the child,” she said.
A younger child may exhibit more clinginess, separation anxiety, a new onset of fears or developmental delays. A teenager might get involved in more risk-taking behaviors or even consider suicide. “And that can be either wanting to reunite with the person who died, if that’s part of their belief system, … or just not caring about life anymore,” Kaplow said.
Better treatments
To help those kids, Kaplow and her colleagues have developed evidence-based treatments that are designed to support traumatized or grieving children.
Trauma and Grief Component Therapy can be tailored to an individual child’s specific needs. A child mourning a loved one will benefit from the modules designed for grieving kids. Another child, who has been abused or witnessed violence, but hasn’t experienced a death, can benefit from the trauma modules.
The Trauma and Grief Center’s goal is to raise awareness about the adaptive side of grief, while also helping to identify bereaved youth who may need a higher level of support.
Multidimensional Grief Therapy is for kids who have experienced a death and are struggling. “It’s designed to address the different bereavement-related challenges kids may have,” she said.
Now, Kaplow and her colleagues are training others to provide these therapies to the kids who need them.
Targeting schools
There is much more work to do, of course, to help communities and clinicians assist kids who are mourning. And schools, said Kaplow, where children spend so much of their time, are an obvious place to start.
In the next six months, Kaplow plans to launch the Handle with Care program in Houston. Already in West Virginia and San Antonio, the program provides a way for police to alert school principals when a child has witnessed a death. From there, the child’s teacher can monitor them for post traumatic stress disorder and refer them to the school counselor, if needed.
Another major initiative is to ensure that school-based clinicians and teachers are trained to identify PTSD symptoms and children who are not coping well with their grief.
“Bereavement has been one of those sleeper traumas that not a lot of schools have paid close attention to,” Kaplow said. “What we’re finding is that bereavement is the №1 predictor of school failure above and beyond any other form of trauma and that includes sexual abuse, physical abuse and witnessing domestic violence.”
“Knowing bereavement is the most prevalent form of trauma, we definitely need to be helping teachers to ask questions and be more direct about inquiring about a recent loss,” she said. “We know that it’s uncomfortable for people. We don’t want to bring it up. But we also know it’s never harmful to inquire about how a child is coping after a death.”
Bea’s parents — Rachel and Erin Alder say they are “extraordinarily pleased” by Seattle City Council’s unanimous vote for paid bereavement leave and were thankful for the support they received throughout the process.
City employees no longer face impossible choice: to mourn their child or keep your job
This week, the Seattle City Council passed “Bea’s Law,” which extends paid family care leave benefits to city employees when their child dies. It is possibly the first paid bereavement law in the nation and a model for other forward-thinking elected leaders at all levels to follow.
The city ordinance is named after city employee Rachel Alder’s infant daughter Bea, who died in November 2017, only 36 hours after being born. Alder brought the issue to the city’s attention after she had to borrow paid time off from co-workers to take time away from work after her daughter died.
“Bea’s Law” is named after city employee Rachel Alder’s infant daughter Bea, who died in November 2017, only 36 hours after being born. Photo: Soulumination
Evermore executive director Joyal Mulheron commended Rachel Alder for her courage and advocacy to honor her daughter Bea and pioneer better support for bereaved parents.
“Bea’s parents Rachel and Erin are honoring their daughter in such a powerful way. On behalf of bereaved parents everywhere, I thank them and Seattle’s City Council for drafting and passing a landmark law that can be an example for elected leaders across the nation,” Mulheron said.
While the federal Family and Medical Leave Act gives eligible employees up to 12 weeks of unpaid leave to care for a new child, recover from a health setback or look after a spouse, child or parent who is ill, it does not include time off for parents to grieve the death of their son or daughter. The death of one’s child is a major omission among the list of conditions that qualify a worker for leave.
380,000 grieving families
The number of bereaved parents affected by shortsighted employment policies should create a sense of urgency for elected leaders to act. Each year, more than 380,000 children, from stillbirth to age 54, die, and hundreds of thousands of parents are left to mourn them.
One industry survey found that 69 percent of employers give parents just three days off after the death of their child. And when a parent is mourning after a miscarriage or stillbirth, that number drops to just 62 percent of employers who allow workers to take bereavement leave.
That’s hardly enough time for a parent to bury a child, much less seek support for managing an immense life change. And when forced to return to work too soon, it’s likely parents won’t be in a state-of-mind that will allow them to be productive and focused on the job or in a position to cope long term.
Research shows that grieving parents deal with long-term difficulties, including higher risks for other mental and physical health issues, along with decreased productivity at work and even lower earnings.
Leaders in two states and a city also have taken action.
Illinois’ Child Bereavement Leave Act requires employers who have at least 50 employees to provide up to 10 days of unpaid bereavement leave. Employees can use the time to attend the funeral, make arrangements after the death or just grieve.
In Oregon, the state’s Family Leave Act requires employers with 25 or more employees to give workers 12 weeks of unpaid bereavement leave.
And Tacoma, Wash., workers earn an hour of paid sick leave for every 40 hours worked. The law specifies bereavement of a family member, including a child, as a qualifying reason to take the leave.
On the national level, there also is a growing movement to expand the Family and Medical Leave Act. In February, the Parental Bereavement Act, originally introduced in 2011, received bipartisan support in the U.S. House and U.S. Senate. The bill would allow grieving parents of children under 18 years to take unpaid leave under FMLA. We’ll have more about the two dads who are behind the bill here on Evermore’s blog later this month.
Impossible choice
More, of course, must be done to support bereaved parents on the job.
“At Evermore, we regularly hear from parents who are faced with a tough choice: Will they take the time they need to mourn their child and lose their job in the process? Or, will they go right back to work in a vulnerable state without the support needed for long-term coping?,” Mulheron said.
Evermore is encouraging readers to contact their elected leaders at federal, state and municipal levels to extend FMLA to bereaved parents and provide paid leave where possible.
Because as Mulheron said: “No grieving parent should ever be forced to make that impossible decision.”
Child deaths, especially those that occur in mass tragedies, are the subject of significant news coverage. Frank Ochberg, chairman emeritus of the Dart Center for Journalism and Trauma at Michigan State University, said that journalists have an important role to play in covering child death and trauma.
A pioneer in trauma research shares how news stories can provide solace
Not every child death makes front page news, but the headlines seem to blare details about another one daily. Mass shootings and their anniversaries. Teen suicides. Car accidents. Drug overdoses. Police shootings. Military deaths. And the list goes on.
And just about every time those deaths make the headlines, news reporters place a call, attempting to reach out to the families for comments about their loved ones.
Some might consider those reporters opportunistic as they attempt to contact families at their lowest depths for a quick sound bite. And, certainly, some families won’t want to field those phone calls as they grieve.
Photo courtesy of Frank Ochberg.
But in a recent interview with Evermore, Frank Ochberg, chairman emeritus of the Dart Center for Journalism and Trauma at Michigan State University, said that journalists have an important role to play in covering child death and trauma.
When done right, Ochberg says journalists’ calls to families and the subsequent news coverage can help families and communities as they mourn the death of a child.
Pioneer, founding father
A trained psychiatrist and a founding father of modern psychotraumatology, Ochberg’s resume is extensive. He is a founding member of the International Society for Traumatic Stress Studies, founder of the Trust for Trauma Journalism, a former associate director of the National Institute of Mental Health and a clinical professor of psychiatry at Michigan State.
He edited the first text on the treatment of post-traumatic stress disorder and served on the committee that defined PTSD, according to the Dart Center’s website. He supported school staff after the 1999 Columbine school shooting.
And, through his volunteer work with the Red Cross, he’s helped victims of disasters, such as earthquakes and plane crashes, sometimes connecting them with the news media for interviews.
The Dart Center is dedicated to “informed, innovative and ethical news reporting” on violence, conflict and tragedy, according to its website. It’s touched as many as 10,000 journalists around the world, providing resources to help them do their job well.
The first act comes immediately following the disaster or death. Those stories serve a need beyond simply alerting a community to a breaking news event, Ochberg said. People seek out news that’s shocking or sad, he said.
“Unfortunately, there’s something that we can call paradoxical pleasure on the part of the reader in seeing something that is horrifying, but being attracted to it,” Ochberg said.
“It exists in every culture, and it goes back to Bible stories and fairy tales and campfire scary stuff. It’s a way that our species has evolved, introducing our children to terrible themes and images and getting them to laugh about it, giggle about it. We apparently need exposure at an early age to these images, whether they are mythical or real … It serves a purpose,” Ochberg continued.
“Now it’s about the impact of what happened,” Ochberg said. “It could include lessons for others who care about the post traumatic stress disorder; good ways that communities or families have healed; ways a troubled family failed to heal.”
The third act of coverage is reserved for those occasions where there’s no good news report or lesson to be learned other than evil happens. Ochberg gives the Holocaust as one example. “In Act 3, you’re not trying to find the silver lining,” he said.
Evermore’s Joyal Mulheron said it’s important for these kinds of stories to acknowledge the ongoing struggles bereaved parents and families face.
“Just because the headlines will move on doesn’t mean the families are,” Mulheron said. “It can be affirming for news coverage to acknowledge this kind of profound grief and how it continues. As one mother put it, bereaved parents make “a daily decision to accept grief and keep going.””
Writing the unspeakable
In the case of a child death, the best stories come when all parties are mindful about the role they play.
And those articles and relationships often begin when reporters contact family members for quotes for a story about a news-making death. Tip sheets for journalists and survivors that were created by Queen’s University Belfast, which the Dart Center links to on its website, spell out what should happen next.
Journalists, for example, should avoid cold-calling a family and find a go-between instead. They also should be prepared to take no for an answer. “Remember,” it says, “that your request will evoke powerful and painful emotions, which may include anger.”
Victims and survivors, the tip sheet recommends, should feel free to say no to an interview or to decline to answer specific questions that they find intrusive. It also recommends that interviewees take care of themselves and have a friend or family member there to support them once the interview is over.
When it works, victims, survivors and family members can find some solace and journalists can write a story with deep impact.
“So often, a person who has been traumatized and aggrieved lacks the language to explain themselves to others,” Ochberg said. “… Being scared speechless is true. Some people lack fluency when we need it most.”
He added: “We have to encourage the journalists, both the mature journalists and the up and coming ones, … that they give words to what many people find unspeakable, but are necessary to communicate.
An award-winning USA Today reporter talks about why she’s covered child death for so long
It’s been nearly 23 years, but USA Today reporter Jayne O’Donnell won’t ever forget the moment.
Jayne O’Donnell, health policy reporter, USA Today.
After writing a series of articles in 1996 that prompted the federal government to make airbags safer for children, a group representing the families of the 26 children who had died invited O’Donnell to their first meeting.
They presented O’Donnell with 26 long stem roses, each one representing a dead child. “Nothing has ever been so powerful,” O’Donnell said.
Decades later, O’Donnell has covered all manner of child death causes — from dangerous consumer products to, more recently as the USA Today’s healthcare policy reporter, tween and teen suicide. She co-founded the Urban Health Media Project to give kids a voice.
O’Donnell invited Evermore founder Joyal Mulheron to attend the Association of Health Care Journalists’ annual conference in Baltimore and participate in a workshop session aimed at helping reporters generate health story ideas and provide research sources and techniques to support their work.
In this Q&A, O’Donnell shares more about her work, why she’s felt compelled to report and write about child deaths and why Evermore has an important story to tell.
Q: Tell us how you got started covering the death of children.
In the late 80s, I was asked to write about the auto industry from the Washington, DC, perspective. Because that was regulation, it immediately got into safety and environmental issues. … And child deaths have always really resonated. It just strikes a nerve with people. There’s no tolerance for anything that kills children.
People seem to move on fairly quickly from some of the other deaths of older people, even 20-somethings. But young kids getting killed became a theme of my reporting, partly because it was very unusual at the time for women to be writing about cars at all. In all the years I wrote about cars, I still can’t really write a cohesive explanation of what makes them run. But I never cared to.
I was really writing from a woman’s perspective and more of a mother’s or father’s perspective long before I became a mother. …
When you start interviewing people who have lost children, that stays with you and has always stayed with me — never being able to imagine what it’s like to be those people.
Q: How can we create greater awareness about the public health crisis bereaved parents and families face?
Recognize that reporters have so little time. You guys have to have the numbers, the trends and the victims available to make it really easy for reporters to write. It’s so hard to get the time to do a project on something like this … And keep the stories out there.
Q: What stories have really stuck with you?
After the airbag story, I co-authored a two-part series on teen driving deaths, and that was really the story that made me become even more obsessed with the concept of how do you get over the loss of a child.
[As part of that series], I had lunch with two women who were featured on the front page of USA Today. Their daughters were 17 or so and had been in a car with two young men. The car crashed and both of their daughters died and one of the boys died, but not the driver. I had lunch with them a year after the crash and the one mother cried almost through the entire lunch, a year later. She couldn’t really leave the house. I was like, wow. I couldn’t even imagine.
Then, I found auto safety too narrow and expanded to cover the Consumer Product Safety Commission. I covered kids product safety — window blinds strangling kids, the cords on the baby monitors strangling kids, a lot of different products that were killing kids.
Right before I had my daughter, my only child, in 2000, I did a series on the company called Cosco. They were hiding the complaints about cribs collapsing and hurting kids. That just terrified me too. When my daughter was born, I used to lie in bed, saying, ‘Oh my God, her crib is going to strangle her.”
Q: What interests you about the work of Evermore and Joyal?
I also had a high school friend who carried a baby to term and then her baby died hours after the baby was born. I knew that she had always included a mention of the child on Christmas cards and was still affected by it. That would be now 30 years later.
So, the fact that Joyal was focusing so closely on grief and related issues really appealed to me.
Q: What are the challenges for reporters covering issues like child death?
There’s so much pressure to write about the latest thing. In a downsized newsroom you can’t spend much time writing about the aftermath of one shooting when another shooting has happened. It’s difficult to do the kind of important aftermath stories that are needed.
One of the other challenges is this: If it hasn’t happened to you, you wouldn’t think of it. … Just the fact that there are more than 19 million parents in this country who have lost a child is fascinating to me. In Barbara Bush’s new biography by USA Today reporter Susan Page, they talk about how affected they were their whole lives by the loss of their daughter at an early age. People forget that.
Q: Why was it important for Joyal to be on the panel?
Because infant and child mortality are such important issues, I think that people need to think of new ways to write about them.
Q: How can Evermore get the word out?
Recognize that reporters have so little time. You guys have to have the numbers, the trends and the victims available to make it really easy for reporters to write. It’s so hard to get the time … And keep the stories out there.
Editor’s note: And that’s exactly why we’ve launched this blog and are working hard to spread the word about the devastating effects on parents and families when a child dies.
The numbers and research are stark:
71% of surviving siblings suffer serious health consequences after the death of their brother or sister.
Parents suffer job and income loss, isolation, marriage and relationship strife, poorer health and even shortened lives after their child dies.
Medical professionals agree that parents and siblings experience a “medical event” after the death of their child, brother or sister. Research shows that they actually are biologically and psychologically altered.
There is a disparate impact on black and Hispanic parents. By age 60, black parents are twice as likely to have experienced a child’s death than white parents.
And while all signs point toward a public health crisis, there are so many ways to help these grieving parents and families — from changes to the Family Medical Leave Act so families can take the time they need to grieve to training educators to safely help students express their grief.
At Evermore, we look forward to sharing the data and the personal stories that will help make changes for the families who desperately need it.
Evermore’s founder to speak at journalism conference
Raising the visibility about the long-lasting effects on parents and siblings after a child dies is a central goal for Evermore, and Joyal Mulheron, Evermore’s founder and executive director, will do just that when she addresses healthcare journalists in early May.
Mulheron will attend the Association of Health Care Journalists’ annual conference in Baltimore and participate in a workshop-style session aimed at helping reporters recognize that the far-reaching impact of a child’s death is an urgent public health crisis.
Health Journalism 2019 will draw hundreds of the country’s top healthcare reporters to Baltimore for three-and-a-half days of workshops, panels, roundtables and field trips that cover the latest topics in medical science, health policy, public health, medical education, consumer health and the business of healthcare, according to the association’s website.
“There is so much coverage, and rightly so, about child death, but there is often very little follow-up about what happens to grieving families,” Mulheron said. “We’re eager for the opportunity to share what we know about the aftermath and why this is truly an invisible public health crisis.”
During the workshop, Mulheron will share her expertise and information about researchers and other sources where reporters can get more information for stories they may be working on.
After a child’s death, studies show that grieving parents are more likely to suffer from depression, marital disruption, psychiatric hospitalization and premature death. For siblings, researchers also link the death of a brother or sister to a higher risk for agitated depression, chronic illness, guilt, lower self-esteem and performance at work and school and premature death.
At the same time, there is little safety net for families who need time to mourn their child. The Family and Medical Leave Act, for example, does not list child loss as a qualifying event for job protection, and more than half of employers allow their workers to take just three days of paid leave to grieve a child.
“These are the kinds of eye-opening issues and statistics that I plan to share during the workshop,” Mulheron said. “We hope that the information will encourage journalists at the conference to start looking more deeply at this very important issue.”
The panel will be moderated by Jayne O’Donnell, the award-winning healthcare policy reporter for USA Today. O’Donnell has explored the causes of child death in her work and was behind a series of articles in 1996 that prompted the federal government to make airbags safer for children. O’Donnell first wrote about Mulheron and her work in 2016.
Two other guests will join Mulheron:
Brie Zeltner is a health reporter at the Cleveland Plain Dealer with an interest in the lifelong health effects of poverty on children and families. She has written extensively about lead poisoning and infant mortality.
George Hobor is a program officer for the Robert Wood Johnson Foundation, a New Jersey-based nonprofit focused on health. He works to promote healthy and more equitable communities, “using the power of data and research to find solutions to social-economic conditions that affect community health, such as residential segregation, housing security, and social mobility,” according to the foundation’s website.
Mulheron left her career to immerse herself in the science surrounding the fallout of losing a child at any age or cause. She then started Evermore — a nonprofit to change the national response when a child dies.
Evermore organization will tackle why and how
More. Bereaved. Families.
Every day, news coverage reports the death of sons and daughters of all ages dying from an array of causes. And the coverage continues. Last week I, like many others, was thunderstruck by the news that Jeremy Richman, Sydney Aiello and Calvin Desir had died.
More. Bereaved. Families.
I know these families’ lives, like my own and many others, are forever divided into two categories:
Life Before and Life After.
But most of all, I have come to know unambiguously, that more could — and should — be done to help bereaved families in the United States.
Observing from the sidelines is no longer an option.
My own Life After started in 2010 after the death of my daughter. And, over time, as I watched the news that detailed the death of yet another child — from the Sandy Hook massacre and Aurora Theater shooting to the deaths of Trayvon Martin and Hadiya Pendleton — I had a very real sense of the heartache, injustices, and lifelong challenges these families would face. I was hit with the conviction that I must do something — even if I did not yet know what that might be.
I decided to leave the only career I had ever known and began to immerse myself in the science surrounding the implications of losing a child and the stories of those left behind.
Americans from all walks of life graciously and patiently shared with me how their lives were changed by one of life’s most tragic experiences. I have had the honor of learning from families, medical providers, members of law enforcement, therapists, researchers, employers, and many more.
And now’s the time to get off the bench to share what I’ve learned and launch a national conversation about child death, its implications, so we can address it for what it is:
a public health crisis.
To raise awareness, encourage funding and push for change, I founded Evermore — a nonprofit that recognizes that when a child dies, what happens next can make all the difference.
Personal Stories, Factual Analysis
We will use this platform as part of our campaign to de-stigmatize the issues bereaved parents face and advise practitioners, employers and others on what bereaved families need (and don’t need).
Evermore has a unique perspective to offer our nation, our communities and our families. We are able to not only share individual anecdotes, but also provide factual analysis informed by research and partnerships with leading scientists and policy experts.
You will see what we see, including how we, as Americans, can and do stand by our families, neighbors, and communities during tragedy.
In a time when our nation seems to be marked by division and dissent, this will be a place where families — and those who support them — can see hope, help and love. You will be able to learn from one another and find solace in sharing stories of slog and promise. This blog will also be a forum to highlight providers who work with families: those who bear the burden of telling parents and those who absorb our traumas. This blog will be authentic and genuine.
Together we can make the world a more livable place for bereaved families.
Evermore’s Ground Rules
There are a few key rules, however…
Every child counts. Whether young or old, before independent life has begun or as an octogenarian, every grieving parent and family deserves to be acknowledged, supported and offered the opportunity to cope with “us.” Whether felon or Park Avenue, we share a common humanity based upon the invisibility of our love, the uniqueness of our children, and how we brave the world without them.
Siblings count too. Siblings, young and old, are often forgotten. They, too, deserve to be acknowledged and supported for their loss.
Everyone has a role to play. Every community organization — public or private — has a role to play. From emergency responders to medical examiners, funeral homes to hospitals to employers. From grocers to recreational centers to caregivers and everyone in between, each institution can support families in their own ways. We hope all will join us in making this change.
We hope you will tune in regularly and give us feedback on the issues addressed and the personal stories covered. Too many people look away. Thank you for reading. We promise to do all we can to make it worth your time.
