Evolving trends related to grief literacy have trickled into the innovative bereavement approaches that hospice providers employ amid rising demand for family support.

Hospices have fine-tuned how they measure quality and shape services within their bereavement programs as more is learned about the diverse ways people both understand and experience grief.

Even the term “grief literacy” has been gaining ground in recent years, according to Sarah Saltee, executive director of Colorado-based 3Hopeful Hearts (3HH). The term generally refers to the ability to understand and recognize that grief experiences span beyond a person’s death and can apply to any significant loss of health, relationships, goals, self-identity or safety, Saltee stated.

“It’s about being able to recognize how grief shows up emotionally, physically and behaviorally, and learning to respond to others’ grief with compassion rather than discomfort or avoidance,” Saltee told Hospice News in an email. “Most importantly, I think grief literacy is about normalizing the many ways people grieve and creating space for individuals to be seen, supported and validated in their experience.”

Founded in 2008, 3HH is a nonprofit, community-based bereavement services provider. The organization’s programs include grief literacy workshops for individuals, businesses, schools and universities, nonprofit and community groups, health care providers. emergency first responders and faith-based organizations, among others. 3HH also offers grief camps and retreats for families, youths and couples. The nonprofit partners with several organizations such as the Alliance for Suicide Prevention, UCHealth, Boys & Girls Club of Larmier County, Colorado school districts, local chambers of commerce and the Early Childhood Council of Larmier County.

A “huge component” of examining grief literacy involves examining the different ways that bereaved people feel, think, act and move through the world, Saltee said. It also includes an understanding that “no right way” to grieve exists, and that “nothing is broken that needs to be fixed,” she added.

Keeping these concepts in mind can help normalize grief conversations and improve more empathetic responses, which can reduce instances of isolation that many individuals often feel, according to Saltee.

Understanding the grief literacy movement

Having a variety of opportunities to improve grief literacy education is key, according to Laura Lirette, director of bereavement services of Oregon-based Mt. Hood Hospice.

“I define grief literacy as the ability to understand the diversity of ways grief presents and to use language effectively to create a supportive space where people with diverse grief experiences can feel seen, understood and supported,” Lirette told Hospice News in an email. “[It’s] focusing on meeting the needs of those left behind and working in the community to expand support for those who grieve.”

The concept of grief literacy reverberates largely under the radar across the globe, according to recent research analysis published in the journal Death Studies. Researchers spanned different psychology and social work programs from universities in Australia, Canada, China, Germany and Japan.

Grief could be better conceptualized and operationalized with stronger development of more compassionate, community-based bereavement approaches, the researchers indicated. Community-based practices and conversations about grief remain “marginal” at best throughout several countries, the researchers stated in the analysis.

Grief literacy includes challenging notions that death and dying should be “housed within clinical and institutional contexts,” the researchers indicated. Bereavement conversations can be better promoted through increased death literacy and dialogue in public spaces, they said.

Greater efforts to examine grief literacy are brewing in the United States. Researchers from the University of Utah looked into the different ways that the grief literacy movement has taken shape across its home state. Born from a year-long state funded program, the research was published last year in the Oxford Academic’s Gerontological Society of America journal Innovation in Aging.

The grief literacy movement is focused on helping employers, clinicians and interdisciplinary staff understand best practices, according to Kathie Supiano, licensed social worker and associate professor in the College of Nursing at the University of Utah. Supiano also serves as director of the university’s bereavement care program Caring Connections, which is part of the University of Utah Health system. Caring Connections in collaboration with other bereavement support programs across the globe has sought to increase awareness through its grief literacy program.

Increased training, education and certification opportunities in bereavement standards are needed to move the needle of improvement forward, Supiano said.

“Grief literacy is this idea that there will never be enough grief therapists to [sufficiently support] mental health clinicians,” Supiano told Hospice News. “The grief literacy movement is intended to educate the public about how to be more compassionate when they engage with grieving people. It’s not using language that can be well-meaning, but actually hurtful to grieving people.”

The University of Minnesota’s Center for Practice Transformation has also joined the grief literacy movement. The university’s center offers a virtual grief literacy training program. The program offers education on grief processes, signs and symptoms, and also examines different variations of bereavement trajectories and strategies for supporting loved ones following a recent loss.

Greater grief literacy education can lead to a better understanding of the “universal experience of healing from loss” and the role of “compassionate communities” in normalizing and validating the bereavement process, according to the university. Increased grief literacy can allow for more engaging, supportive relationships and improved outcomes, the University of Minnesota stated on its website.

Grief literacy can build stronger support

An estimated one-in-ten bereaved adults will develop prolonged grief disorder or complicated grief after a loved one’s death, according to a report from the U.S. Department of Health and Human Services (HHS). Communities nationwide often underutilize bereavement services due to lack of public awareness of available programs in their area and stigmas associated with seeking support, the HHS report found.

Hospices working to improve grief literacy among the communities they serve should start with a curious approach to public outreach, according to Saltee. Getting curious and actively engaging a broad range of community groups can shift from trying to “fix grief” to truly witnessing its impacts among individuals, she said.

“It really helps to offer opportunities for open conversations, storytelling and listening spaces where people feel safe to explore and express their grief in whatever way it shows up,” Saltee said. “Because the more we normalize the full experience of grief, the more compassionate and grief-literate our community becomes.”

The volume of available grief professionals to provide bereavement support is insufficient to meet rising demand as a swelling aging population reaches the end of life in coming years, according to Supiano.

The lack of sufficient workforce resources will leave many bereaved families facing difficult challenges during and after a loved one’s loss, she said. This trend is fueling greater awareness efforts around grief literacy.

Hospice providers often extend their bereavement programs to anyone experiencing a loss in their service regions, regardless of whether the deceased was a patient. Several hospices offer summer grief camps for youths, individual and group grief therapy sessions for adults and families, as well as various art and music or social support services.

Widespread misconceptions about bereavement support serve as a leading barrier preventing greater grief literacy, according to Lirette.

People often associate support with talk therapy and are less aware of the various other ways to process grief, such as through expressive arts, memorial project building and other activities, Lirette stated. More hospices are finding successful engagement avenues by offering grief education workshops for local organizations such as senior centers, civic clubs, libraries, churches and other community groups, Lirette indicated. Getting creative with bereavement outreach is important as well, such as offering public events at local visual arts and writing workshops.

Having a diverse mix of bereavement services is important to being able to meet a wide range of grieving needs, Lirette indicated.

“This mix allows a greater depth to emerge in the conversations that happen within groups, because a diverse array of relationships and death stories and the subsequent grief responses that followed are part of the conversation,” Lirette said. “Including the greater community strengthens our offerings and creates a broader social network for those who engage to be able to find others who may have similar experiences or grief responses happening.”

Grief literacy has increasingly shifted toward dialogues related to traumatic losses, Supiano said. Losing someone to suicide, drug overdose, vehicular accidents or violence and abuse involves trauma-informed bereavement training practices that sufficiently support bereaved families.

Grief training for police and death investigation teams is an incredibly supportive and important piece of moving toward improvement, Supiano indicated. Hospices are well-poised to extend their bereavement support and training in collaborations with local officials and emergency first responders, she added.

“Unfortunately, most grieving people will never come in contact with a grief professional, but we want them to be well-served by those who know how to bring comfort in their communities and [those] who feel confident in supporting grieving people,” Supiano told Hospice News. “Grief literacy is about educating the community that these discussions are difficult and hard, but there are resources available so that you don’t have to do this by yourself. Part of grief education is advocating, synthesizing and disseminating information [to] the community.”