The State of Grief Report; COVID-19's Impact on Bereavement (PDF)

The State of Grief Report: COVID-19’s Impact on Bereavement Support in America DECEMBER 2021  The State of Grief Report: COVID-19’s Impact on Bereavement Support in America 02 A Letter from the New York Life Foundation 04 Topline Survey Results 10 Expert Perspective: Q&A with Dr. David Schonfeld 12 Expert Perspective: Q&A with Dr. Julie Kaplow 14 Expert Perspective: Q&A with Joyal Mulheron 16 Partner Views: The Future of the Bereavement Field 18 Conclusion 19 Survey Methodology In so many ways, COVID-19 has served as an unprecedented inflection point for the bereavement support field, underscoring the importance of recognizing and acknowledging grief, particularly in children, and being present for grieving families each and every day. At New York Life, supporting bereaved children and their families has been at the heart of our Foundation’s mission since 2008. For us, this seemed like the right moment to take a deeper look at the grief support landscape to explore opportunities for expansion and improvement so that, together with our bereavement partners, we can meaningfully advance the field. We are pleased to share with you “The State of Grief”—our inaugural report examining the bereavement field, with a particular focus on COVID-19’s impact on the grief journey and available grief support. We are thankful to be able to offer perspectives from our extensive network of bereavement experts and partners on what we can learn from this moment and how we can enhance our support efforts at home, in schools, and in our workplaces. A critical part of that effort will be normalizing our shared conversation around grief and helping to ensure that bereaved families don’t feel quite so alone. To that end, New York Life Foundation’s research reveals that the pandemic has sparked interest in a national dialogue about grief and its impact, affirmed the difficulty of grieving during COVID-19, and opened up parents’ eyes to the need for more grief support services in school. In the U.S., 1 in 14 children will experience the death of a parent or sibling by age 18; even as COVID-19 subsides, the need to provide support and resources for everyday grief will endure. Given this elevated interest in a discourse around death and grief, our common challenge now is to work together to ensure that this heightened awareness and understanding leads to sustained and meaningful change in how we support grieving families. A Letter from the New York Life Foundation TABLE OF CONTENTS  Heather Nesle President of the New York Life Foundation Maria Collins Vice President of the New York Life Foundation At the New York Life Foundation, we are committed to equipping our partners—from teachers to medical professionals to local bereavement centers—with the insights, resources and training they need to better support grieving families. Our Brave of Heart Fund, launched in 2020, provides financial support in the form of charitable relief grants to help the families of healthcare workers who lost their lives to COVID-19. Our Grief-Sensitive Schools Initiative (GSSI) helps to raise awareness of the impact of grief on school-age children by providing educators with free access to expert online resources and grief support tools. Since 2018, the program has reached over 3,500 schools across the country. And, because workplace support is so critical to grieving families, we have recently expanded our own employee workplace bereavement policy in an effort to make it more flexible and better support our grieving colleagues. The more resources and greater public understanding that we can generate together—including support from friends, relatives, classmates, and colleagues—the bigger the difference we can make for many grieving families. Moving forward, we are committed to working with our partners to place young people of color as a critical focus of our bereavement investment approach, develop grief training materials for medical professionals, and address the increased need for comprehensive bereavement support for children who lost a parent due to the COVID-19 pandemic. We ask that you join us in our efforts to support grieving children and their families.  4 The State of Grief Report: COVID-19’s Impact on Bereavement Support in America The New York Life Foundation surveyed Americans to better understand their views on COVID-19’s impact on grief support broadly as well as the role schools play in providing bereavement support. The research indicates that the pandemic has spurred interest in a broader national conversation about grief and created more awareness of the need for more responsive bereavement support and resources. A Conversation Americans Want: Our survey reveals that Americans want to talk more about death and loss—and people who lost someone to COVID-19 want that more than anyone. 71% of adults—and 79% of those who lost someone to COVID-19—want a more open national dialogue about death and loss COVID-19 has been the catalyst for a larger conversation focused on grief: Half of adults (51%) say the pandemic has prompted them to have conversations with family and/or friends on death and loss; 54% of parents with school-age children say the same thing about conversations with their children The pandemic has also reinforced the need for support: Nearly two- thirds of adults (64%) say the pandemic has greatly underscored the nation’s need for more bereavement support COVID-19’s Impact on Grief Support in America “ This survey makes us all more aware of the importance of caregivers and parents having open conversations with their children about death and grief. These conversations provide an opportunity for children to share their thoughts and feelings and for parents to provide useful information and emotional support.” Dr. Irwin Sandler Research Professor, REACH Institute and Department of Psychology Arizona State University  5 Yet, those who lost someone to COVID-19 reported a greater openness to talking about grief: 63% agree that after losing a loved one to COVID-19 they are more open to having conversations about death and loss of adults aren’t aware of any types of bereavement services available to them 26% 78% of those who lost a loved one to COVID-19 say it was a traumatic experience Grieving in isolation: 65% say that they weren’t able to grieve in-person with friends and family when their loved one died of COVID-19 …And without help: More than half of adults, 52%, who lost someone close due to COVID-19 did not seek out any form of grief support during the pandemic “ While addressing grief has always been necessary, we now find ourselves in a time where awareness of this need is heightened. We all need to embrace this moment to encourage open conversations and practical supports—at home, in school and in the workplace—so people will be properly prepared, cared for and supported when a loved one dies.” HEATHER NESLE President of the New York Life Foundation Free bereavement resources from the New York Life Foundation are available here A Traumatic Experience—Often, Without Support: Losing a loved one to COVID-19 is traumatic, but many Americans suffering such a loss haven’t sought out grief support.  6 The State of Grief Report: COVID-19’s Impact on Bereavement Support in America How to Add Support? A Strong Rationale for Building Workplace Grief Support: The grief support resources available to Americans in their workplaces are little known, but they are appreciated among those familiar with them. Few familiar with workplace bereavement support: Just a quarter of employed adults are familiar with the grief support and/or bereavement resources offered by their workplace of employed Americans are unsure of their workplace bereavement leave policy 28% 30% Yet, employers are providing good support: Among employed adults familiar with the grief support provided by their employer, four in five adults (80%) are satisfied with the resources offered by their company  7 COVID-19’s Impact on Grief Support in America (continued) Enhanced bereavement leave would be highly valued: When asked what enhancements they are most interested in seeing in their workplace’s bereavement efforts, employed Americans are most interested in... 67% 66% 65% 63% 58% Paid bereavement leave Extending leave for bereavement Flexible bereavement leave Employee hardship relief fund Enabling employees to define what constitutes a “loved one” “ Employers that offer flexible, paid, and extended bereavement leave are providing valued, empathetic support that will help to ease the employee’s return to work. We recently took steps to update our own bereavement policy and we hope other companies will join us in examining their offerings to ensure employees are getting the support they need.” HEATHER NESLE President of the New York Life Foundation  8 The State of Grief Report: COVID-19’s Impact on Bereavement Support in America Raising awareness regarding need and support: About 6 in 10 (61%) parents say the pandemic has opened their eyes to the need for more grief support services in school—and 47% agree that the pandemic has made them more aware of the grief services offered by their child’s school An urgent priority: Nearly 7 in 10 (69%) parents agree that grief support should be a priority for schools of parents think schools should give them more information and guidance on how they can help their children through traumatic events 71% Schools Have to Play a Big Role Too, Parents Say: COVID-19 also has heightened the focus on what schools are doing to ease grief—and how their support role could become even more meaningful. A hard topic: 61% of parents say that dealing with COVID-19 has been “very hard” on their children 14% of parents say their child has a friend or classmate who lost a parent or sibling to COVID-19 To learn more about enhancing your school’s grief support efforts, please visit the Grief-Sensitive Schools Initiative According to the medical journal Pediatrics, from April 2020 through June 2021, 140,000 U.S. children lost a parent or caregiver, with children of racial and ethnic minorities accounting for a disproportionate number of the children who suffered such a loss.  What kinds of grief support are seen as top focus areas for schools moving forward? Encouraging peer to peer support Proactive communication to parents/guardians about grief resources and support Resources for students about grief and death Access/referrals to grief counseling Educator training on grief support 79% 79% 79% 78% 78% “ When the pandemic hit, we were so grateful that we had already participated in the Grief-Sensitive Schools Initiative (GSSI) and had grief resources on hand. Over the last 18 months, as our students have lost loved ones—both to COVID-19 and other causes—it has made us more aware of the importance of grief support in school. It has also shown us how complex grief can be as our students have had to cope with moving, financial strains, and not being able to attend funerals in person.” WANDA SANTIAGO Elementary School Teacher at P.S. 335 Granville T. Woods Brooklyn, New York “First Book educators have emphasized that the need for books and educational resources to support children experiencing grief, loss, and healing has never been higher. One educator recently shared that COVID has compounded all of the tensions that already existed for her students, including the stress of living in poverty, and so many are desperate for mental health services, quality grief materials, and technology resources.” Jules Appleton Director of Research and Insights at First Book COVID-19’s Impact on Grief Support in America (continued)  10 The State of Grief Report: COVID-19’s Impact on Bereavement Support in America Q&A with Dr. David Schonfeld For over 30 years, you have provided consultation and training to schools on supporting students and staff at times of crisis and loss. In your view, how has COVID-19 served as an inflection point for grief support in schools? The death of a close family member or friend has always been a common occurrence during childhood that can have a profound impact on children’s learning, social, and emotional development, and mental and physical health. Yet too often, schools’ grief support efforts tend to focus on school shootings and other school-based crisis events that are associated with deaths. The pandemic has dramatically illustrated that the deaths of family members from natural causes has a profound impact on children and that schools can play a vital role in providing support and assistance. I expect that this heightened focus on grief from deaths of family members and friends from natural causes will continue even as schools continue to prepare for crisis events. The New York Life Foundation survey results indicate that parents are looking to schools as critical places of support for their children. In your experience, how can parents and schools work together to support grieving students? Parents have critical insights into how their children are coping after a significant loss and what type of support and assistance is generally helpful. They should share that information with educators. But children often hide their distress from parents after the death of a family member in order not to overwhelm parents who are also grieving. Children may therefore find it safer to share their reactions and feelings with school-based professionals who can partner with students’ families to provide consistent support at home and at school. School professionals also provide support to a far greater number of children and can draw on their broad experience to share strategies that have worked with other students. David J Schonfeld, MD, FAAP, is the Director of the National Center for School Crisis and Bereavement at Children’s Hospital Los Angeles. Dr. Schonfeld has partnered with the New York Life Foundation on its Grief-Sensitive Schools Initiative and, along with the New York Life Foundation, serves as a lead founding member for the Coalition to Support Grieving Students. The New York Life Foundation spoke to him about COVID-19’s impact on grief support in the U.S., how parents and schools can work together, as well as what steps schools can take to create a more grief-sensitive environment.  11 As you mentioned earlier, the pandemic has prompted a renewed focus on grief support in school. How do we ensure that this attention and support is sustained in the long-term? Schools are often the only institution that provides consistent support to virtually all children in this country. As a result, people continually turn to schools to provide vital services to children, such as nutrition, mental health, physical health, dental care, etc. Once communities observe the positive benefit of these services, they tend to become expectations. School professionals are in a unique position to offer support to grieving students over time and to minimize the negative impact of grief on learning. The efforts of the Coalition to Support Grieving Students and the Grief-Sensitive Schools Initiative have been so appreciated and effective in preparing educators to support grieving students. I anticipate basic skills to provide empathic support to children who are in distress will be expected of all educators. I never really understood why it wasn’t consistently part of teacher training in the past, but I believe it will be in the future. What guidance would you offer to schools looking to enhance their grief support efforts moving forward? Especially during this pandemic, we have to start with providing basic training to educators and more advanced training to school mental health providers. This is important, but it is also hard work. So, this needs to be coupled with support to adults for their own grief and to reduce the risk of compassion fatigue. The Grief-Sensitive Schools Initiative provides free tools developed by the Coalition to Support Grieving Students (www.grievingstudents.org) and the dissemination structure to accomplish this goal of training more educators. I hope that eventually the basic training is incorporated into all teacher preparation coursework and GSSI becomes a means of reinforcing and expanding on the basic knowledge that educators bring to their first teaching position.  12 The State of Grief Report: COVID-19’s Impact on Bereavement Support in America Q&A with Dr. Julie Kaplow Over the last 10 years, Dr. Julie Kaplow, a licensed clinical psychologist, has established three Trauma and Grief (TAG) Centers across the country, overseeing the development and evaluation of novel treatments for traumatized and bereaved youth and disseminating trauma- and bereavement-informed “best practices” to community providers nationwide. In the following Q&A, Dr. Kaplow details what steps parents and caregivers can take to offer support to children amidst this pandemic. In the context of the pandemic, what are some of the bereavement-related challenges that children are facing? As a result of COVID-19, over 710,000 Americans have died, and over 140,000 children have experienced the death of a parent or caregiver (Hillis et al., 2021). Unfortunately, these numbers continue to grow and even more rapidly among Black and Latino families. The context in which the deaths are occurring (e.g., social distancing that prevents family gatherings; inability to say goodbye) makes the grief-related impact even more pronounced, particularly for children and adolescents. Our work with bereaved youth has shown that children tend to grapple with three primary bereavement-related challenges: separation distress, existential/identity distress, and circumstance-related distress (Kaplow et al., 2013; Layne et al., 2017). • Separation distress can take the form of intensely missing the person who died and yearning and longing to have them back. • Existential or identity distress includes feeling lost without the person or unsure of how life will go on without the person. • Circumstance-related distress involves excessive concerns about the way the person died (e.g., guilt about possibly having transmitted the virus; anger directed at doctors who were unable to save the person). In your view, how important is it to maintain open and honest lines of communication with children when a death occurs? Caregivers often shy away from discussing the death of a loved one with children, as they tend to worry that they’re somehow “planting a seed” of sorrow or raising concerns where there aren’t any. On the contrary, bereaved children feel understood and validated when caregivers openly discuss the person and/or the death (Shapiro et al., 2014). Some caregivers avoid talking about the death because they are uncertain of what to say or how to help. In fact, the New York Life Foundation survey found that 71 percent of parents would like more information and guidance regarding how to help their children through potentially traumatic events, including the death of a loved one. The good news is that parents and caregivers can play an essential role in helping their children to grieve in healthy ways. What can parents and caregivers do to assist children following a death of a loved one? 1. To address separation distress (yearning/longing for the person who died), caregivers can help children find ways to feel connected to the person who died, including looking at photos of the person together, memorializing the person, or engaging in activities that the person enjoyed. If children were not able to  13 say goodbye, encouraging them to write a letter to the person that includes everything they would have wanted to say to them can be particularly helpful. It can be just as powerful to have children write a letter back, including everything they hope the person would say to them in response. Caregivers can also give children something tangible that reminds them of the person, like a necklace or a favorite shirt (Kaplow et al., 2019; Layne et al., 2017). 2. To address existential or identity distress (uncertainty about how to live life without the person or believing life has no meaning anymore), caregivers can help children identify positive traits or characteristics they have in common with the person who died and discuss how they can carry on the legacy of the person by harnessing those traits and behaviors. It can also be helpful to have a discussion with children about what the person would have wanted for them. How can they live their life in a way that honors the person’s memory? (Kaplow et al., 2019; Layne et al., 2017). 3. To address circumstance-related distress (being very preoccupied with unhelpful thoughts about the circumstances of the death) in the context of the pandemic, caregivers can help children identify the ways in which we are coming together as a society to try to tackle this problem and things they are already doing to prevent the spread of the virus. Often the circumstance-related distress stems from unanswered questions or concerns that children have about the way the person died (e.g., did they suffer? Were they sad or lonely?). It can be helpful to provide opportunities to answer any questions children may have using simple and straightforward language and allowing them to guide the conversation as much as possible (Kaplow et al., 2019). Although most youth who experience the death of a loved one will go on to lead healthy, happy lives, some will require more than just parental support. What are some of the “red flags” that parents and caregivers can look for? As you mentioned, most grieving youth will not need psychological treatment following the death of a loved one; however, the specific “red flags” below may indicate the need for a more thorough evaluation and possibly grief-focused therapy. Younger children: • Significant developmental regressions (e.g., eating, sleeping, language) • Extreme irritability and/or aggression • Separation anxiety (e.g., refusing to leave a caregiver’s side) • Intense fear, including nightmares/night terrors Older children or adolescents: • Inability to get out of bed in the morning or complete daily tasks • Constant tearfulness • Extreme social withdrawal • Excessive risk-taking behaviors (e.g., alcohol use, drug use) • Any expression of a wish to hurt themselves or die Although COVID-19 has, in many ways, created more social isolation, the pandemic has also helped to raise awareness regarding the impact of bereavement on youth. Caregivers have the ability to help children identify and address difficult bereavement-related challenges and come through the pandemic with even more skills to cope with future adversity.  14 The State of Grief Report: COVID-19’s Impact on Bereavement Support in America Q&A with Joyal Mulheron How has COVID-19 complicated the challenges that employers face in addressing the concerns and needs of their employees and communities while also running a business? Employers, like all Americans, are confronted with unprecedented mortality occurrences— COVID-19, homicide, overdose, suicide, and climate disasters. These epidemics have put an emotional strain on American hearts and caused financial instability for many American families. Today, more than ever, employers are called to be stewards of civic and social concerns. COVID-19 has compounded these unprecedented strains, and at the same time, employers recognize their important role in supporting their workforce through the everyday grief that occurs all around us every day as well as crisis events. Even in the face of these challenges, to what degree have employers been able to step up and better meet the needs of their bereaved employees in particular? American employers are taking a leading role and allocating resources to supporting employees in the aftermath of death. More and more employers are offering voluntarily paid bereavement leave and other benefits to bereaved employees. These benefits are designed to provide employees with time to grieve and offer them assistance when they transition back to work. When employers support their work force in this way, they become front-line responders to family tragedies, effectively playing an outsized role that creates more stability for bereaved families—and the community at large. After spending more than a decade as a Washington, D.C., public policy expert working to improve the health and well-being of all Americans, Joyal Mulheron encountered few support systems before, during, and after the death of her daughter. In 2013, Joyal founded Evermore, a nonprofit dedicated to making the world a more livable place for bereaved families. As the pandemic has illuminated the need for greater bereavement support in the workplace, Joyal offers guidance and tips for employers to enhance their bereavement efforts.  15 What is the state today of employer bereavement leave policies—and how are they benefiting employees? Some of the most progressive bereavement leave policies, such as New York Life’s, allow employees to take weeks of paid leave, as well as determine who is a significant relationship requiring time away from work. Others allow fellow colleagues to pool sick days and give them to newly bereft employees. These types of policies can help families who have lost a loved one to a long-term illness where leave may have been exercised prior to the death. What are the core principles that all employers need to keep in mind as they strive to better support their employees experiencing grief? For all employers, regardless of size or revenue, showing empathy, acknowledging that grief is an evolution, and listening to individual employee needs are good first steps. Collectively, these types of offerings can help ease and reintegrate an employee back into the workplace. This conviction is central to our partnership with the New York Life Foundation and our shared dedication to shifting societal norms toward the goal of a creating more grief sensitive workplaces. We think our collective civic leadership and investment in American families has never been more urgent. We hope that many more employers will join us in this important effort to formalize workplace bereavement policies and support families and communities.