The creators behind a new documentary set to air on public media channels across the country in May want to start a national conversation about a topic that many shy away from — grief.
The goals for “Speaking Grief” are twofold: to validate the experience of grief through the stories of those mourning the death of family members and also to make it easier for the rest of us to support the grieving.
So many times, says Lindsey Whissel Fenton, the senior producer at WPSU who is producing, directing, and writing the documentary portion of the multiplatform Speaking Grief initiative, friends, neighbors and coworkers want to support those who are grieving a death, but don’t know what to say or do or how to help.
“People are left without tools and, unfortunately, that often leads to them disappearing because they fear saying the wrong thing or because they feel ill-prepared,” she says. “We felt the biggest value we could add was to help educate people who find themselves in a support role. We wanted to address those feelings of discomfort by giving them a basic understanding of grief as well as suggestions for how to go about offering support, so they can show up for their people even when they feel uncomfortable.”
Universal interest
Although Fenton has experienced death-related loss, there was no single, life-defining personal experience that spurred Fenton to make “Speaking Grief,” though, she said, many people assume she must have a profound grief story that sparked her interest in the topic. A now-retired colleague, Patty Satalia, originally came up with the idea years ago, and it took a while to gain traction.
But people’s assumption that a personal loss story is the only reason Fenton would focus her creative efforts on a topic so many would prefer not to broach is telling, Fenton says. “What is interesting is that people come at this with the assumption that somebody would only care about grief if they are directly affected by it.”
In reality, she said, we all will struggle with grief at different points in our lives — and we all will grapple with how to help a close friend or family member who is mourning a death.
“Eventually, it will affect all of us,” she says. “And even if you haven’t personally experienced it yet, it’s something we all have a stake in and need to get better at.”
Different places, varied experiences
The hour-long documentary, produced by WPSU Penn State and distributed by American Public Television (APT), highlights a collection of people from across the country who are grieving a family member’s death. “We wanted to show people who are at different places in the grief journey in terms of when the death occurred,” Fenton says.
Some have just experienced a death in the past year or two. For others, it’s been longer. Either way, Fenton wanted to demonstrate that grief is an ongoing experience — not some one-and-done process with a finite timeline.
At the same time, the documentary highlights different kinds of losses as well — a son who died in a car accident, a boy and his grandmother who died in a fire, a stillborn baby, a husband and father who died from brain cancer — to illustrate how those experiences can shape the grief experience.
Throughout the documentary, Fenton uses commentary from grief professionals to provide some clarity to the themes featured in each of those personal stories — such as explaining how children grieve in unexpected ways and why secondary losses, like when friends or family vanish because they don’t know how to provide support, occur.
“When you realize what people go through in addition to the actual death event, it’s shocking and sometimes difficult to hear,” Fenton says. “On top of losing someone you love, you experience all of this other loss. You experience the loss of friends, the loss of financial security. All of these things that you might not realize if you haven’t gone through this type of experience yourself.”
Bringing all together
“Speaking Grief” is a multi-platform project that also includes social media campaigns via Facebook and Instagram and a website that will feature a growing number of personal stories, videos and resources. The film’s trailer was released in January.
Just the launch of the trailer has already generated positive feedback from people from around the world, says Cassie Marsh-Caldwell, project manager. “The amount of people who just simply took the time to email and tell us a little bit about their own personal story and say thank you” was surprising, she says. So were the groups who reached out — grief organizations, along with nursing colleges, educators and funeral directors, among others.
Plans originally included in-person premiere events in April though those plans have changed because of the need for social distancing during the coronavirus pandemic. Public media stations across the country also are scheduling broadcast dates for “Speaking Grief” starting in May and continuing throughout the year.
Fenton is hopeful the documentary and web content will bring together both those who are grieving and those who are seeking to support them, providing a safe space for each group to learn from the other.
“It can be a very emotional space, but we want to create the kind of dialogue where people can ask questions and not be afraid to make a blunder in the interest of learning, so maybe the next time they are confronted with grief, they can feel a little bit more prepared,” she says. “We need everybody to engage in this and think about the role they can play in helping all of us get better at grief.”
As another decade comes to a close and Evermore marks its fifth year working to improve bereavement care in the United States, we have reason to celebrate 2019.
Here at Evermore, we made big strides toward building our team and raising awareness about the need to support grieving parents. Meanwhile, across the country, new initiatives and research moved forward the conversation about how to support the bereaved.
Evermore in 2019: Advocacy and awareness
Julie Kaplow, PhD, ABPP (left)
Wendy Lichtenthal, Phd
We were thrilled to add two renowned experts on grief and bereavement to our Scientific Advisory Council. Wendy Lichtenthal is director of the Bereavement Clinic at Memorial Sloan Kettering Cancer Center. Julie Kaplow serves as director of the Trauma and Grief Center at Texas Children’s Hospital.
At the same time, our burgeoning advocacy network began to focus on three priorities as we seek to push the needle forward on new policies and supports for those who are grieving. The advocacy network is working to:
Increase research funding so we can better understand who is impacted and how to help.
Grow family support programs across the country to meet families where they are, regardless of race, income or geography.
Boost funding for professional education, development and support to ensure a more qualified, skilled workforce; bolster coping skills; and decrease high rates of suicide among these professionals who respond to traumatic events, like bereavement.
We also were laser focused on raising the national conversation about grief and bereavement. In November, in fact, the Wall Street Journal published Evermore Executive Director Joyal Mulheron’s letter to the editor about the need for companies to better accommodate grief.
“Job protection for bereaved parents seems reasonable,” she wrote in response to a story about how employees juggle work after a loved one dies. But, she pointed out, it’s not considered a qualifying event that allows for leave under the Family and Medical Leave Act.
As we work hard to improve the lives of those who are grieving, we’ve also been pleased to play even a small role in efforts around the country and world to help families cope with a death.
Bereavement Care in 2019: New support, vital research
As we focused on our own work at Evermore this past year, we also were thrilled to witness these notable steps forward in bereavement care that will only support our work to continue to push for more assistance for those who are grieving.
Bea’s Law passed in Seattle
In June, the Seattle City Council passed Bea’s Law, which extends paid family care leave benefits to city employees when their child dies. It is very likely the first paid bereavement law in the nation and a model for lawmakers elsewhere.
The ordinance is named after a city employee’s infant daughter, who died just 36 hours after being born. Bea’s mother was only able to take time off after her daughter’s death by borrowing paid leave from her co-workers. She brought the issue to the attention of city leaders, who made the bold move to make a change.
“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 at the time.
CuddleCot featured in New Amsterdam
In November, “New Amsterdam,” NBC’s popular hospital drama, showcased a product that’s changing the care system for stillbirth families — the CuddleCot. Developed by Flexmort, which is based in England, the CuddleCot has been on the market for about seven years. The device, which is small enough to fit inside a bassinet, works by continually pumping and cooling water underneath a body. The movement of the water and the cooling process drags away heat from the body, slowing down any change. It gives parents more time with their stillborn baby.
In an interview with Evermore, Steve Huggins, Flexmort’s commercial director and CuddleCot’s co-inventor, said he was thrilled for the opportunity to showcase what’s possible for parents grieving a stillbirth on TV.
“We are always pleased when the subject of stillborn is tackled in a TV show as it starts people talking about what unfortunately does happen,” Huggins told us. “We thought that the show dealt extremely well with the subject and showed how important it is that the mother has the choice to have time with the baby. Something like this really does let people know that this is totally acceptable and the options are readily available.”
FMLA bill wins bipartisan support
For years, two fathers — Kelly Farley and Barry Kluger — have been pushing lawmakers to approve the Sarah Grace-Farley-Kluger Act, which would update the Family and Medical Leave Act and allow parents to qualify for unpaid leave when a child, who is under the age of 18, dies. In February, for the first time in eight years since the bill’s original introduction, it received bipartisan support from both the U.S. House and the U.S. Senate.
Few want to dwell on death and dying, especially when a child is involved. Sadly, the funding and research required to study the impacts of death and grief on the living has been slow to come. But that’s starting to change. In the last year, researchers shed some important insights on death and grief and there’s more to come in 2020.
Research published in the October issue of Social Science & Medicine found that the death of a child has “lasting impacts” on parents. In fact, bereaved parents had a 32% higher rate of mortality than non-bereaved parents, according to the report.
And in June, research in the Journal of the American Medical Association noted a 30% spike in suicides in the United States, including troublesome increases among adolescents, in particular.
As we carry forward into a new decade, these data points will only help us as we continue to push for better policies, more support and increased visibility into an issue that touches us all.
As we look toward the next five years, we hope you will consider joining our movement, sharing our work or volunteering in your communities. To bring bereavement care to America, it will take every last one of us.
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.”
So many times, says Lindsey Whissel Fenton, the senior producer at WPSU who is producing, directing, and writing the documentary portion of the multiplatform Speaking Grief initiative, friends, neighbors and coworkers want to support those who are grieving a death, but don’t know what to say or do or how to help.
But people’s assumption that a personal loss story is the only reason Fenton would focus her creative efforts on a topic so many would prefer not to broach is telling, Fenton says. “What is interesting is that people come at this with the assumption that somebody would only care about grief if they are directly affected by it.”
At the same time, the documentary highlights different kinds of losses as well — a son who died in a car accident, a boy and his grandmother who died in a fire, a stillborn baby, a husband and father who died from brain cancer — to illustrate how those experiences can shape the grief experience.
Plans originally included in-person premiere events in April though those plans have changed because of the need for social distancing during the coronavirus pandemic. Public media stations across the country also are scheduling broadcast dates for “Speaking Grief” starting in May and continuing throughout the year.
