Children Discuss Their Grandparent's Dementia

This video from the United Kingdom's Alzheimer's Society shows children talking about their experiences of having a grandparents suffering from dementia and Alzheimer's disease. Thanks to the Hospice and Nursing Homes Blog for sharing.

More on Hospitals Handling of Early Infant Death

Last month we posted an article about how two hospitals handle early infant death in Berks County, Pennsylvania. Earlier this week, Tampa Bay Online published two articles about a bereavement program, Cherished Moments, at Brandon Regional Hospital in Florida. One article discusses the program, which includes photographing the baby, and creating a box for mementos. The other article profiles the nurse, Laurie Van Damme, who began the program.

New Pediatric Palliative Care Team in Omaha

An article from the Omaha World-Herald describes the new pediatric palliative care team at the Children's Hospital in Omaha. The team consists of five members, known as the Hand in Hand program, and includes a physician, social worker, chaplain, nurse, and a child life specialist.

The program began as a test project in October 2006 and became a unit of Children's Hospital last fall. The team has worked with 47 families, 13 of which have since lost their child.

Hand in Hand provides "pediatric palliative care" -- team members listen to, comfort and assist families that face life-and-death decisions for their children. Team members help families make plans and goals for those kids.

How Hospitals Handle Early Infant Death

A recent article from my local newspaper, the Reading Eagle (PA), discusses how two area hospitals help families whose babies die at birth. One hospital hangs a yellow rose on the mother's door, so all hospital staff know the family has lost a baby. They allow parents to spend as much time as they want with their child.

Berks County’s two hospitals — Reading Hospital and St. Joseph Medical Center — have support systems in place that help families cope with infant death.

As part of that effort, hospital staff puts together memorial boxes for families. Those boxes include photographs, locks of hair, knitted clothing and small shells used to baptize the babies.

"We want to create as many memories as we can," said Lori Meredith, a nurse in the neonatal intensive care unit at Reading Hospital. "It is a lot of memories to create in a short amount of time."

Difficulty Finding Appropriate Care for Disabled Young Adults

What happens to disabled children when they age out the programs designed to care for them? As the New York Times reports, their parents and caregiving can be left scrambling to find an appropriate facility to offer continuing care. This Wednesday's article featured the story of Sam Stabiner, who suffered from a rare form of meningitis at age 15 and is now categorized as 'medically fragile.' Stabiner is one of about 8,000 people under 30 living in a U.S. nursing home population of 1.4 million. And nursing homes, oriented to care for an aging population, are ill-prepared to meet the needs of their younger residents, the Times reports.

Follow-Up Questions from HFA's Living With Grief: Children and Adolescents Teleconference

HFA’s teleconference features some of the best-known experts in the field of grief and loss. While the goal of the program is to share new insights and tangible ideas that can be put to use to help grieving children and adolescents, HFA strives to hear from professionals who are working with children every day. Prior to the 2008 broadcast, HFA solicited questions from Site Coordinators. Many of these questions were worked into the program, but as a follow-up we have included two more here, with answers from Dr. Kenneth J. Doka.

Question: What is the best way to tell a child that a loved one has died when it happens suddenly, or if there has been no discussion about death before the death occurred?

Dr. Doka: Simply, honestly without euphemisms. I would want to find a quiet area and make sure the child had a lot of support around. One book that can be useful in explaining death is What Does that Mean? A Dictionary of Death, Dying and Grief Terms for Grieving Children and Those Who Love Them by Smith and Johnson. This book identifies more than 70 important words, explains how to pronounce them and what they mean, and offers guidance about how to use these words and discuss these subjects with children.

Question: Do you have suggestions for other books that can be used to help children deal with grief?

Dr. Doka: Books can be very effective resources in helping children and adolescents learn more about grief. Bibliotherapy can be very useful but I always treat it as a prescriptive. Books have to be “prescribed” for a particular concern -- if not they can sometimes do as much harm as good. Also remember that the books used should be developmentally appropriate for the particular child. I think it is also important that the books are used in conjunction with counseling or other support.

Listed below are a few suggestions for books divided by reader level. These books are part of a more comprehensive list found in “Bibliographical Resources—Children, Adolescents, and Grief” by Charles Corr, in Living With Grief: Children and Adolescents, Kenneth J. Doka and Amy S. Tucci, Eds., published by Hospice Foundation of America, 2008.

Picture and Activity Books for Preschoolers and Beginning Readers

Carney, K. L. (1997-2001). Barklay and Eve Activity and Coloring Book Series. Dragonfly Publishing Company, Wethersfield, CT. This series currently has eight titles. Each book tells a story and offers drawings to color or blank spaces to draw pictures about a loss-related topic that adults may find difficult to discuss with children. In each book, two curious Portuguese water dogs learn lessons like: loss and sadness do happen; those events are not their fault; it is OK to have strong feelings as long as they are expressed in constructive ways; and “we can get through anything with the love and support of family and friends” (Book 1, p. 5).

De Paola, T. (1973; 1998). Nana Upstairs and Nana Downstairs. New York: Putnam. Tommy likes visiting “Nana Upstairs” (his great-grandmother). When told that she has died, he does not believe it until he sees her empty bed. A few nights later when Tommy sees a falling star, his mother suggests that perhaps it represents a kiss from Nana who is now “upstairs” in a new way. Later, an older Tommy repeats the experience and interpretation after the death of “Nana Downstairs” (his grandmother).

Storybooks and Other Texts for Primary School Readers

Alexander, A. K. (2002). A Mural for Mamita/Un Mural Para Mamita. Omaha, NE: Centering Corporation. A young girl, her family, and the whole neighborhood plan a fiesta to celebrate the life of her grandmother who has recently died after a long illness. Mamita was well known and greatly loved in the neighborhood as the proprietor of the local bodega or store. The girl’s special contribution to the celebration is a brilliant mural painted on the side of Mamita’s store. The text of this book appears in both English and Spanish.

Bunting, E. (1999). Rudi’s Pond. New York: Clarion. While Rudi is sick, his classmates send cards and make a big “GET WELL RUDI” banner for his hospital room. After Rudi dies, the children write poems and make a memorial pond in the schoolyard that attracts a beautiful hummingbird.

Literature for Adolescent Readers

Gignoux, J. H. (1998). Some Folk Say: Stories of Life, Death, and Beyond. New York: FoulkeTale Publishing. Here are 38 legends, retold in prose and poetry, that different cultures have used to come to terms with the reality of death and hopes for life beyond the grave. Brief comments from the author introduce each section and follow each story. The book is also enlivened by 8 dramatic illustrations. A treasury of global culture to stimulate the imagination and to use in working with children.

O’Toole, D. (1995). Facing Change: Falling Apart and Coming Together Again in the Teen Years. Burnsville, NC: Compassion Books. This little book is intended to help adolescents understand loss, grief, and change, and to think about how they might respond to those experiences.

Traisman, E. S. (1992). Fire in My Heart, Ice in My Veins: A Journal for Teenagers Experiencing a Loss. Omaha, NE: Centering Corporation. This book offers a journal framework for teenagers who have had a loss. A line or two of text on each page and many small drawings offer age-appropriate prompts for this purpose.

The Commonwealth of Virginia Declares April the Month of the Grieving Child

Read the proclamation on The Grieving Child website and view events being planned by the Central Virginia Bereavement Coalition, including HFA's national teleconference next week which focuses on children's grief. Find out where you can view the teleconference in your neighborhood.

HFA Profiles: Pamela Gabbay, Program Director of the Mourning Star Center

Today we introduce you to Pamela Gabbay, Program Director of the Mourning Star Center for grieving children, a community service program of the Visiting Nurse Association of the Inland Counties. Like many of you who support those who grieve, Ms. Gabbay feels a true calling and connection to this important work. You can learn more about Ms. Gabbay and others like her by attending HFA's national teleconference broadcast next week. Find a site in your area to view the teleconference.
Lisa McGahey Veglahn

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Pamela Gabbay

When Pamela Gabbay, Program Director of the Mourning Star Center for grieving children, a community service program of the Visiting Nurse Association of the Inland Counties – Hospice, describes her path to helping children cope with loss, she says she has “one of those stories.” Gabbay’s parents died a few years apart, when she was in her 20s and just starting a family of her own. Through it all, she simply tried to cope, not really knowing anything about the process of grief and loss. “Six weeks after my mom died,” Gabbay remembers, “I was in a deep spiritual place of sadness and despair, but needing hope and guidance. I told myself, ‘If I ever get out of this pain, I will dedicate my life to helping other people through their own pain’.” And from that moment forward, that is exactly what she has done. She went back to school and began to learn as much as she could about counseling those who are grieving. And then came what she calls the “struck-by-lightning moment.”

Through a contact at school, she heard about a children’s grief center, the Mourning Star Center, that was opening in her community. Not only was she struck by the proximity of the center to her home, but even the name held meaning for her. “My mother had always talked fondly about a boat she had worked on—the Morning Star!” Gabbay said. “I signed on as the first volunteer at the center, and on that first day I knew I was home.”

One of the most wonderful and surprising elements of Gabbay’s work is witnessing the level of compassion and support that the children and teenagers offer to each other. She remembers the conversation between two boys, both of whom had 14-year-old brothers who had died, sharing what their families had each done with their brothers’ belongings. “Watching how the teens make new friends, how they lean on each other and show true compassion for one another, is a true gift,” and is an ongoing reminder of the importance of peer support, Gabbay said.

Of course, supporting grieving children takes much more than peer support. Gabbay and the others on staff at Mourning Star provide a wide range of activities and programming, much of it focusing on how to deal with “special days,” like holidays or birthdays. And as kids grow and change, their needs change as well. As Gabbay points out, the transition is “huge for that 8th-grader who is becoming a high-school freshman without Mom around,” and that same student may need renewed support when facing graduation four years later.

The Mourning Star Center runs concurrent parent groups and Gabbay strongly encourages parents to learn as much about what kids may be facing in grief and loss. Parents of grieving children and teens, of course, often worry that their grieving child may not be doing well in school. Gabbay often uses the analogy of an Etch-a-Sketch, the children’s toy that one draws on and then shakes up to erase the picture. “A kid may be drawing a picture, having fun,” she says, and then when a parent dies, it’s as if “someone comes along and shakes it all up, and all of the pictures and information is gone.” These stories, she says, can often be a way to help adults find a better understanding of what kids may be going through.

These examples can also be very useful when educating teachers and school administrators about grief and loss, Gabbay has found. Just as grief may affect adults cognitively, the same can be true for young people. So a grieving teenager may not be grasping algebra concepts cognitively, and at the same time may be asking the question, “Why does algebra matter right now, anyway?” Gabbay is enthusiastic about the “fabulous, caring individuals” in her local school system and has found the schools to be open about setting up grief groups and accessing the resources that her grief center provides. And she has found that the importance of this not only helps children cope, but that young people will remember those teachers who reacted to their loss in a supportive and helpful way.

When Gabbay speaks to teachers or other adults who want to help children and adolescents cope with loss, one point she always makes is that young people experiencing loss often feel “invisible;” that they feel they are not seen or heard in the same way. Yet she also finds that, while younger children need to be “seen and heard,” teens may prefer that others do not directly address their loss. Gabbay’s advice is to always ask the young person what he or she feels would be most helpful.

One experience that Gabbay has found particularly “amazing—one of the best weekends of my life,” was when she directed Camp Erin, an overnight grief camp funded by the Moyer Foundation. Forty-six kids attended the two –day camp in the mountains, as well as 50 volunteers—“all of whom expressed enthusiasm and interest in attending next year’s summer session the day we ended!” Gabbay recounts. Gabbay describes the arc that she witnessed in the kids who attended. “When they arrived on Friday, they were somewhat trepidatious—they were getting to know each other, asking questions. By mid-day Saturday you could already see a change—they weren’t just bonding with each other, but were actively working on processing their individual grief experiences. You could see a real awareness of the concept that they weren’t ‘alone’—the realization that others understood. For many, it literally added a spring in their step!” By Saturday night’s ceremony, in which each child lit a luminary for the person who had died and placed it in a boat which was then set afloat on the lake, Gabbay said that the adults could see that, “it was as though a burden had been lifted, if even just for that one night.” Many parents made similar observations when reunited with their children on Sunday. Gabbay already has plans to expand participation in this summer’s camp, and the kids at Mourning Star are still talking about it as well.

While Gabbay clearly has found her calling in her work of helping young people cope with loss, she is quick to acknowledge that the work can be difficult. She feels fortunate to work with a strong team at the Mourning Star Center, a team that can “lean on each other in a meaningful way.” She emphasizes how important it is that they can stop for a hug or to talk, recognizing that “it’s okay to be honest and real about how hard it can be to hear these stories every day.” Gabbay also began an ADEC (Association for Death Education and Counseling) chapter in her area. She did this partly out of the need to have a forum for local professionals to network and share ideas, she says, but also because of the need to be with others who, even with “just a look,” can offer understanding and support.

Gabbay recognizes the importance of self-care. A self-professed “huge music fan,” she is sure to attend at least ten concerts every year, and even books passage on a rock-and-roll cruise. One of her favorite activities each week is to “turn up the music, hop into the pool” with her two teenagers, and just “act silly.” These moments help sustain Gabbay, someone who truly feels that “once you find your calling, you can’t stop!

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Pamela Gabbay, M.A., FT, was awarded the Fellow in Thanatology by the Association for Death Education and Counseling and is a Certified Bereavement Counselor. She earned her B.A. in Psychology from California State University, San Bernardino and her M.A. in Psychology from Claremont Graduate University. Pamela is the Program Director of The Mourning Star Center for grieving children in Palm Desert, California. The Mourning Star Center is a community service program of The Visiting Nurse Association of the Inland Counties - Hospice.

Pamela is the Camp Coordinator for Camp Erin - Palm Springs, the first Camp Erin in California. This camp is a free camp for grieving children created in partnership with The Mourning Star Center and The Moyer Foundation. Pamela is also President of the California Chapter of the Association for Death Education and Counseling (ADEC So Cal). ADEC So Cal is an organization dedicated to promoting excellence in death education. Additionally, Pamela is co-owner of Grief Posters.com, a poster company that produces sensitive and educational grief-related posters.

Supporting Children's Grief

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. We asked one of our regular contributors, Vince Chiles, to discuss his experiences with children and grief.

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Vince Chiles

Children often live in the midst of the dying. This fact seems counterintuitive when we think of people at the beginning of their lives, but many children will experience the death of a loved one. In fact one of the most magical things a hospice worker witnesses, is the connection between the terminally ill grandparent and the young child or adolescent. A few years ago, we had a patient whose five year old grandson tucked his grand dad in every night. This was very touching and a powerful reminder of the mystery of the circle of life.

I have seen this connection time and time again, of the young comforting the old in their time of need. The very old and young balance each other and remind us of how our own vulnerability supports the life process. In the Native American traditions there is a simple prayer ‘to all our relations.’ It is often said at the beginning and end of ceremonies to commemorate the actions of the group in relation to those who came before and those who are yet to come. Life is a circle that is connected with death and birth, again and again.

The grieving youngsters’ feelings are real and profound when they lose their ancient guides. The thought of not attending my Aunt Joan’s funeral when she had died thankfully never entered my parents’ minds. All eight of my siblings attended her burial recognizing the finality of life, and validating our grief. There are those families who do elect to exclude youngsters from memorials and funerals. Perhaps they think shielding the child from the presence of the dying and deceased protects them in some way, but I have found this to be a contrary perception that can create more problems. The classic story is that of the Buddha, a prince shielded by all suffering in life, due to an infancy prophecy that the prince would become a holy man. When the young prince had a glimmer of suffering he left the security of his palace to discover the secret of life –desire creates suffering. The king lost his beloved child, to the realities of the world. Children are their own beings who need respect and support through their own grief, not denial or protection.

If we choose not to shield the child from death, how can help guide them through their grief? We can support the grieving child in many ways. It is important to tell the child what is going on with their loved one, and what to expect. ‘Grandma is sick, and she’s not going to get better this time. That means she will eventually die, and we have help from hospice here. They can talk to you if you would like.’ Offering a child or grandchild the services of a hospice social worker can be a great thing for the child or adolescent to prepare for saying goodbye and adjust to the grieving process. When a child or grandchild says goodbye, the parent or grandparent suffers less. It may be a heart-wrenching encounter to witness, but the potential benefits outweigh the consequences of not bidding farewell. Providing grief support resources after some one has died in the form of educational groups, grief and loss camps, support groups, or one-on-one counseling can all help. It is important through that the child be open to these services and that they are able to opt-out or maintain some control if activity becomes to overwhelming.

Children and adolescents grieve differently than adults do. They may need to draw pictures when they are very young to make sense of what has happened, or have some alone time to figure it all out when they are older. I remember a Native American boy I had worked with on the White Mountain Apache Reservation, who was so angry that his father had died when he needed a positive role model in his life. We walked to the White River and started to throw rocks into the water. I challenged him to throw the rocks as far as could across the river, letting go of his anger, and allowing the water to wash away his pain and suffering as his angry rocks were swallowed up by the current.

Finding creative ways to help children and adolescents grieve can also help the adults around them process their loss. Children are grounded in their intuition and haven’t figured out how to rationalize and explain away life’s mysteries. They can draw a picture or express themselves with other creative outlets that inspire us to see their wisdom in spite of their youth. Hospice social workers, bereavement counselors, and volunteers are great resources to families with grieving children and they often provide support to families in need regardless of whether the family received hospice care.

Magic in many instances is an illusion, but the magic in hospice when a child grieves effectively is that they evolve into healthy adults. They learn to see the connections in the circle of life, and recognize the vulnerability we all share. Children who learn to grieve well recognize the interdependence of life, and can appreciate the relationships they have on a deeper level. Helping a child learn how to effectively grief a loss, is a little magic we all could benefit from.

Vince Chiles, MSW

Children Assist in Care of Alzheimer's Patients, According to New Study

The Alzheimer's Foundation of America (AFA) released a study last week showing that among so-called "sandwich caregivers" (those who are caring for an elderly relative while also parenting children under 21,) most had children who assisted them in providing care, including attending doctors’ appointments, feeding, and dressing their loved ones. In this third annual study conducted by AFA, 559 caregivers were interviewed in December 2007. From the press release:

Among children, ages 8-21, who are involved in caregiving, many are reported as taking on significant tasks:

• About one-third of young adults (ages 18-21) assist with doctors’ appointments;


• 42% of young adults assist with transporting loved ones with Alzheimer’s disease;


• About one-quarter of young adults and teens (ages 13-17) assist with activities of daily living, such as feeding and dressing;


• Nearly 90% of pre-teens (ages 8-12) visit and entertain a loved one with Alzheimer’s disease (please use caution when interpreting results due to small base size)


• Approximately 85% of teens pay visits to the person with the disease.

“Taking care of someone with Alzheimer’s disease can be an enormous drain on the caregiver and on family resources. For sandwich caregivers the problem is even more acute. It is clear that caregiving is a multigenerational concern. Young adults and even teens and pre-teens are being impacted in life changing ways by their caregiving responsibilities,” said Eric J. Hall, AFA’s president and chief executive officer.

Improvement in Care of Children with Cancer

A retrospective study of 119 patients who died from cancer between 1997 and 2004 was compared to 102 cancer patients who died between 1990 and 1997. The goal of the study was to determine whether increased palliative care could affect patients’ quality of life and care. Appearing in the Journal of Clinical Oncology, the study concluded that these children ". . . are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely."

In a press release, lead author Joanne Wolfe, MD, MPH, director of Pediatric Palliative Care at Dana-Farber and Children's Hospital, discussed the findings.

Wolfe and her colleagues identified notable changes in the patterns of care. Medical record reviews indicated a 40.7 percent increase in documented discussions about home or hospice care in the follow-up study (76 percent of medical records included a note that palliative care options were discussed with the family, up from 54 percent). There also was a 16.4 percent increase in do-not-resuscitate orders (78 percent, up from 67 percent). The proportion of children who died at home remained similar between the two studies, but, in the second study, there was a 42.1 percent decrease in the proportion of the children who died in the intensive care unit (22 percent, down from 38 percent).

Although the follow-up study indicated that children were proportionately as likely to experience fatigue, pain, shortness of breath, or anxiety, they suffered less from the symptoms, with the exception of fatigue.

Wolfe said that one of the most meaningful findings to her was the shift in where children are dying. "Fewer children are dying in the intensive care unit, and that is likely because other options are open to families," explained Wolfe. "This might be because there are more opportunities to have conversations around this intensely sad outcome, but at least it is making a bit of a difference in the context of losing a child to an illness. Dying in the ICU might be the right location for some children and families, but at least they are aware that they have options."

Perinatal Hospice Programs

An MSNBC story from Monday focuses on perinatal hospice programs. The story also shares a website, www.perinatalhospice.org, that tracks the growth of perinatal hospice programs in the United States. The site is run by Amy Kuebelbeck, whose son was diagnosed prenatally with a deadly heart defect in 1999. In a previous post, we shared an article that appeared in the New York Times last year, which explains the role of perinatal hospice and followed two families experiences.

Julia's Life in Pictures

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. One of our regular contributors, Elizabeth Uppman, reflects on the role a hospice art therapist played in her and her daughter's life after the death of her son, Gabriel.

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Elizabeth Uppman

My son Gabriel was 3 when he died. His sister Julia had just turned 6. The following months were rough on everyone, especially Julia, who acquired a whole catalog of fears (dogs, tornadoes) and developed the habit of following me from room to room of our tiny house.

Stephanie, the art therapist from hospice, came for her first visit the week after Gabriel died. Stephanie brought clay and crayons and paints and beautiful big sheets of paper, and she and Julia sat down at the kitchen table to make art. Stephanie's visits didn't magically dissolve Julia's fears or make our going-to-bed battles any better, but for that one hour per week, Julia basked in her attention.

One of their projects was a pictorial history of Julia's life. Julia drew six scenes: her birth, our move from Mexico to Kansas, Gabriel's birth, Julia's first day of school, her fourth birthday, and Gabriel's death. The scenes are connected by round gray stepping-stones. In the middle of the picture is a seventh scene, an imaginary one, in which a white-robed Gabriel hovers over Julia. In cartoon word-balloons Gabriel says, "I see Julia." Julia says, "What, Gabriel?" Gabriel replies, "I see you."

Click here to view a larger image.

Fast-forward a couple of years. We have a new baby, Lucia, and are moving into a new house. Unpacking, I pull a picture out of a box. It is Julia's pictorial history, which Stephanie framed for us as a goodbye gift. "Hey, Julia," I say, "where do you want to put this?"

Julia dashes in from the next room, her long hair flopping. She has been videotaping the new house and wants to get back to it. She looks at her artwork – the blobby airplane, the people with no necks and cauliflower hands – and wrinkles her nose. Clearly, her artistic abilities have matured since then. "Do we have to put it up?"

"Well, we don't have to put it in your room if you don't want to."

She considers. "Can we put it in Lucia's room?"

"Why Lucia's room?"

"Well, she has to learn the story."

The picture is still hanging in Lucia's room, amid a taped-up assortment of Lucia's own art. Just now I went in to look at it. The airplane made me smile, its wings upraised like a bird's. I had never noticed that, in all three of Gabriel's scenes, he is smiling.

Elizabeth Uppman

Interview with Dr. J. William Worden

HFA is pleased that Dr. J. William Worden, a leading expert in the field of children and bereavement, will be a member of HFA's teleconference panel in April. Dr. Worden discusses his groundbreaking work with HFA's Lisa McGahey Veglahn as the co-director of Harvard's Child Bereavement Study, based at Massachusetts General Hospital; the changes he has seen in the field since he began the study with co-director Dr. Phyllis Silverman; and creative strategies he has found that can benefit children and adolescents dealing with grief and loss.

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Q. You have been played an instrumental role in the Harvard Child Bereavement Study. Can you briefly describe that project and what impact it has had on what we know about children and loss?

A. Dr. Phyllis Silverman and I were co-directors. Our goal was to develop a study of bereaved children that would the most effective study to date. We met with our first group in 1987 and followed each group longitudinally for two years. A few components of the study are particularly significant:

• We interviewed both parents and children in families where one parent had died; up to that point, most studies on bereaved children had only interviewed the surviving parent.
• We chose children ages 6—17 from communities in the Boston area representing a wide range of backgrounds and demographics.
• We matched each bereaved child with one non-bereaved child as a control.

One of the most significant findings from our work has been that many of the negative consequences associated with the loss of a parent do not appear in children for as long as two years after the death. Even hospice care, which has always been strong in offering bereavement support, generally focuses on the first year after the death.

Q. What implications does that finding have for hospices and other organizations that work with bereaved children?

A. One of the main objectives that has come out of the study has been to develop a screening instrument that can be used, 4-6 months after the death, to predict which children will not be doing well two years out. On average, we find that about 20% of children will need intervention after two years. This average contrasted significantly with the average for the control group, which was closer to 9—11%.

Donna Schuurman of The Dougy Center has used our screening instrument in her enrollment, and they found that their programs did indeed primarily reach those 20%. Utilizing the instrument and the findings from the study does not mean that we recommend excluding 80% of children from bereavement support, nor do we want programs to wait for two years until those kids really need help. The screening instrument can help serve as an indicator, 4-6 months after the loss, of which kids might need help later on, and offer those interventions now.

In my book Children and Grief: When a Parent Dies, I write that there are basically three approaches of how we have helped kids in times of loss:

1. We can take a sort of traditional approach—“it’s tough for every kid to lose a parent” and offer all bereaved children some sort of intervention. But what we found from the Harvard study is that not all kids need it, and it is not cost-effective.
2. We can wait to see that a child is really in trouble—acting out, failing in school—and then step in.
3. Using our findings and instruments, we can develop an early prediction of potential problems and hopefully use a more preventative mental health approach.

Q. Is there one factor that seems to be a strong predictor for children who might have trouble coping after the loss of a parent?

A. It is very clear that the one variable that most strongly affects the functioning of a child after loss is the functionality of the surviving parent. If that parent is depressed, if he or she is not able to maintain a consistency within the home with regards to homework, discipline, etc., that child is going to have a much more difficult time adjusting to the loss.

Q. So does that mean that programs should focus more on helping the surviving parent?

A. That’s an interesting philosophical issue. It certainly may be more appealing to funders and community members to offer programs for children, rather than adults. Some of the work may just be in re-thinking what type of support is offered. For instance, I once oversaw a fairly traditional men’s bereavement program, and attendance was very low. We made a change and focused more on “skills for single parents,” and were able to reach out and really help those men.

Irwin Sandler’s group in Tempe, AZ has developed an intervention to identify poorly functioning parents, with the hope that by identifying these parents, the children will then also benefit.

Q. What changes have you seen in professional beliefs about children and loss since you entered this field?

A. In the last 15—20 years, I have definitely seen an increased interest in the issues facing bereaved children. There has been much more written in the literature on intervention, and some wonderful books for kids have been written as well.

The Harvard study was really a spawning ground for the concept of “continuing bonds,” which is now a strong theme in bereavement. The phenomenon was clearly prevalent with the children we interviewed, so we developed some questions to pursue the concept as the study went on. In children, we do not see the need for continuing bonds as a predictor of a problem. The existence of these bonds did not have negative consequences for most children.

Q. What are some fundamental components of how children grieve that may differ from grief in adults?

A. Based on the research, a great deal of the differences depends on age and development. I generally break it down into three categories:

1. Preschoolers/young children: For about the first year after the death, it is very common for this age group to show major regression to earlier developmental stages, in areas such as toilet-training or even language.
2. School-age: One finding in the Harvard study that has always fascinated me was how many children this age somaticize grief—headaches and stomach aches are very prevalent. Some children this age may also revert to clinging behavior. This is not to say that it would be unusual for a school-age child who has just lost a parent to want to stay close to the surviving parent at first. With intervention, there is always that fine line between supporting the child’s wishes and promoting a behavior that may not be healthy.

   Aggression can also be a factor with this age group, especially with boys. In these cases it is critical that the school personnel are aware of, and sensitive to, the child’s circumstances.

3. Adolescents: In general, the grief you see with adolescents is fairly similar to that of adults.

I am often asked the question, “Do young kids grieve?” Some professionals say that for a person to experience grief, that person must be capable of understanding certain abstractions about death, mortality, etc. My belief is that, even if a child is not able to grasp abstractions, he or she will respond to separation, and that is grief. And even very young children will pick up on the “vibes” of a family that is in crisis, or dealing with loss.

Q. What role can schools play in helping children cope with loss?

A. In the Harvard study, we found for the most part that schools have been doing a good job in helping kids. For many young people, the most important intervention is simply having patient adults who are willing to help kids find ways to talk about the loss, and being willing to listen. While some kids in our study reported that they did not want to talk, very few kids reported that a teacher wouldn’t let them talk.

Many schools are now partnering with hospices and other community groups to provide bereavement support in the school. The only advice that I would stress is that schools should not offer “mixed” groups for children dealing with divorce and children dealing with the death of a parent.

Q. In your work with the Harvard study, what role did the funeral play for the children?

A. Most children we interviewed attended their parents’ funeral. Attending the funeral can help the child feel important at a time that he or she may feel displaced by what is happening around them. In some cases, children can be encouraged to participate in the funeral, which can help them feel included.

In general, I like to see the child given an educated choice. They should be told what they will see, what they should expect. For very young children, up to five years of age, the parent can generally decide what would be best. One suggestion that can help is to “assign” an adult friend to accompany the child to the funeral, in case the child has second thoughts.

Q. It has been found that up to 20% of young people who are grieving may require more intensive intervention. Beyond the more obvious behaviors, like self-destructive acts, what are some more subtle warning signs that a young person is struggling and needs more help?

A. One significant concern is when a child exhibits significant, sudden changes in behavior. Of course, short-term changes may be normal. But if the changes are persistent, or striking—for example, the usually social child doesn’t want to be around anyone—this may be cause for concern.

A few “red flag” signs that may indicate the need for further assessment by a mental health professional are:

• If a child cannot speak about the dead person, or leaves the room when the person’s name is mentioned;
• A child whose aggression becomes destructive, especially if this is new or unusual behavior
• A child who develops persisting anxiety.

Again it is important to look at these in the context of the death; many of these behaviors may be typical soon after the death, but if they continue they may be more serious.

In any of these situations, I would urge professionals to take the time to listen well; to be patient and really develop relationships with the children they work with, so they can offer them the best support through this challenging time.

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J. William Worden, PhD, ABPP, is a Fellow of the American Psychological Association and holds academic appointments at Harvard Medical School and the Rosemead Graduate School of Psychology in California. He is also co-principal investigator for Harvard's Child Bereavement Study, based at Massachusetts General Hospital. He is the author of Personal Death Awareness; Children & Grief: When a Parent Dies; and is co-author of Helping Cancer Patients Cope. His book Grief Counseling & Grief Therapy: A Handbook for the Mental Health Practitioner, now in its third edition, has been translated into 12 languages and is widely used around the world as the standard reference on the subject.

Barriers to Pediatric Palliative Care Examined

Pallimed reviewed a recent article from the journal Pediatrics on how health care providers perceived barriers to palliative care. The researchers surveyed 689 health staff at UCSF Children's Hospital (117 nurses, 81 physicians, and 42 staff from a variety of other disciplines responded.) The top two barriers identified by staff were, first, uncertain prognosis and second, family not ready to acknowledge incurable condition. Pallimed's Christian Sinclair, MD, points out that, "These two reasons are intimately related and are joined by the skill to adequately communicate medical information, probabilities and uncertainties, and the ability (for staff and patient/family) to hold out for hope but accept the probability of decline."

High School Newspaper Reports on Student Reaction to Celebrity Loss

A high school reporter examines why teenagers are often very affected by the death of a favorite celebrity. From the article:

"Teen psyche supports an attachment to faraway celebrity figures and makes their deaths all the more real, according to Carolyn Barry, an associate professor of psychology at Loyola College. Barry reasons that the teenage demographic is the most interested in popular culture. 'Research has documented that adolescents become oriented towards the larger peer and popular culture to a greater degree,' Barry says, noting that the distinction is especially true between teens and elementary school-aged children."

"Furthermore, the progression of technology has played an important factor in allowing teens to feel such a personal bond with their favorite celebrities, according to Barry. 'Given the reality of living in an age of information technology, adolescents can – and many do – gather tremendous amounts of detail about celebrities,' Barry says. 'As a result, these…adolescents might perceive themselves as having formed a relationship with these celebrities, even if it is just a one-way relationship.'"

If you're interested in learning more about how teens experience loss, attend HFA's national teleconference on April 16th. The teleconference is broadcast at sites across the U.S. and Canada. Registered sites can be found on HFA’s Find-A-Site database, located here. This list is updated on a weekly basis so if there isn’t a site near you, please check back in a few days.

Resiliency in the Face of Trauma - Study Examines Impact of 9/11 on Children

Dr. Kenneth J. Doka

The New York Times recently reported on a study completed by researchers from Mount Sinai School of Medicine and the Jewish Board of Family and Children's Services in New York on the effects of 9/11 on 116 children who had witnessed the attacks. These children ranged in age from one to five years old at the time of the attacks. The study found that the children who had still experienced residual trauma from the events were those who had experienced some prior trauma, even a minor one as a dog bite, in their lives.

The Times piece rightly emphasized the significance of this finding – that early exposure to trauma makes one more sensitive to subsequent events. Yet, there is an understated complement to this article that affirms the natural resiliency of children. It is amazing to note that even after witnessing horrific acts such as people jumping off buildings, most of the children were able to go on with their lives with surprisingly little effect.

This resilience is supported when parents are open to communicating with the child. When a child experiences or witnesses a traumatic event, parents do well to allow the child opportunities to talk about the experience, ask questions, and express their range of reactions. Parents can model the ways that they respond to such events and share their own coping strengths. It is important to be honest yet reassuring. In the aftermath of 9/11, I was part of a panel interviewed on a radio show. We were asked how would we respond to a child’s question, "Will this happen again?" One psychiatrist suggested we might reassure the child, answering that such an event would never again occur. My response was different – emphasizing to the child all the ways we were seeking to prevent such a reoccurrence. Honest communication supports and respects the strength and resilience of children.

Dr. Kenneth J. Doka

Note from HFA: This April, HFA is hosting a national teleconference focusing on the experience of grieving children and adolescents. The program and accompanying book will focus on the most current theories and practices in this area, combining academic research with hands-on ideas for use in hospice support groups and other settings.

Pennsylvania's Efforts to Increase Hospice and Palliative Care for Children

A follow-up to an item we posted Jan. 14, The Philadelphia Inquirer reports on a Pennsylvania task force that is examining ways to eliminate barriers to children receiving hospice and palliative care. From the article:

"Some of the goals the task force is considering would require legislation or the redrafting of state regulations.

For instance, federal regulations now permit reimbursement for hospice care only if a child is given six months or less to live, and if the family forgoes any further intervention. Many private insurers follow the federal model.

And that, hospice advocates say, puts families in the position of making the choice between hospice and painful, and possibly fruitless, hospital treatments.

Some states, such as Colorado and Florida, allow children to receive hospice and palliative care simultaneously with traditional medical treatments.

That is not the case in Pennsylvania, and the task force is examining what it can do to change that."

Supporting Children Coping with Cancer

An article from the Baltimore Sun addresses support groups for children who have a family member with cancer. The program, started by the Children's Treehouse Foundation, is called CLIMB (Children's Lives Include Moments of Bravery.) The group notes that there are 1,400 cancer hospitals in the U.S., but only 50 to 60 such programs with emotional support groups for the children of those patients.

HFA's 2008 Living with Grief live-via-satellite teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. Learn more about the program, to be held April 16, 2008 and find out where you can view the program near you.

Task Force in Pennsylvania Examines Options for Terminally Ill Children

Last Monday we published a report of a pediatric palliative care project starting in California. This article discusses the Pediatric Palliative and Hospice Care Task Force forming in Pennsylvania to look into the service that are available for dying children and their families. More information about the task force can be found from Pennsylvania's Department of Public Welfare website.

California Offers a Pediatric Palliative Care Pilot Program

Five counties in California have been selected to prepare a new palliative care program for children with life-threatening illnesses. This would allow children to receive palliative and hospice care, while still continuing with aggressive medical treatment. California's pilot program can offer an alternative to parents who struggle with choosing hospice for their children. An article from the Santa Cruz Sentinel notes:

"Dying is not a prescribed science, especially with kids," said Ann Carney Pomper, executive director of Hospice Caring Project of Santa Cruz County, which takes care of five to 10 children each year. "It's difficult for parents to have to say 'yes' to some kind of indication that death is near.

"With the waiver, 'what is best for my kid?' can be the question," Pomper said.

Schools Debate Honoring Parents Wishes at the End-of-Life

A December 9 Chicago Tribune article discussed the role public schools play in honoring end-of-life decisions for children in their care. Some parents, who have struggled through a child's life-threatening illness for years, have made the difficult decision of establishing a Do Not Resuscitate (DNR) order for their child. However, end-of-life decisions are not the province of the family alone, as this article illustrates.

While hospitals have experience with DNRs, schools are treading on new territory. Some schools may have a policy of ignoring such orders; in others, confusion may exist over what actions the order allows, according to reporter Jeff Long's article. Long's report indicates that end-of-life questions and debates are arising in areas where they were never discussed before.

A Survey of Parents Who Have Lost Children Suggests Improvements for End-of-Life Care

The study, published in the journal Pediatrics, surveyed parents of children who had died. Pediatric deaths mainly occur while children are in a critical-care setting, and palliative care is not widely available. The study suggested improvements in the areas of doctor-parent communication, coordination of care and communication, easier access to doctors, and respect for the parent-child relationship.

On Grief: From One Child to Another

Milly Bell was seven years old when her father died from a brain tumor. With the encouragement of her mother, she used drawing and painting to help ease her grief.

When Milly learned that she isn't the only kid to have lost a parent, she wanted to share what she had learned. The resulting book, My Daddy is Dying, was assembled by her mother and is now being published with help from her father’s former employer and FORCE, a UK cancer survivor charity.

"I wrote about the things I found difficult like going to sleep. I hope that my book helps other children and lets them know they are not alone." (BBC)

Some of Milly’s suggested activities include: making a color-coded “feeling chart”; creating a recipe for a “happy feelings cake” and drawing a picture of what it would look like; and, drawing a “circle of life” diagram to illustrate how all living things, including plants and animals, live and die.

PDF’s of some of Milly’s activities are available from FORCE’s website.

As War Continues, Children Continue to Deal with Grief

Children typically revisit a loss as they grow and change developmentally. This article in the New York Times examines how children of soldiers killed in Iraq are dealing with these losses, and how the Tragedy Assistance Program for Survivors (TAPS) helps them cope with the unique issues they face.

Perinatal Hospice Programs Offers Assistance for Families Experiencing the Earliest Loss

This article in The Des Moines Register discusses the Perinatal Hospice Programs at a local hospital. The program is "for patients who have been given a nonviable diagnosis or a life-threatening diagnosis for an unborn child." A March 2007 Health article from The New York Times provides an excellent description of perinatal hospice and its history.

Supporting Children's Grief Through Shared Experiences

When a family deals with loss, children need special support in their grief. Reporter Maja Beckstrom, in her article The ABCs of Grief, highlights the stories of some families in the Twin Cities who found support from professionals and other families dealing with loss.

For many young people, learning that other children are coping with grief helps them to feel less alone. Read an article by a 14-year-old boy writing about his experience of loss.

Eight Myths about Children, Adolescents, and Loss

Note: This article by Kenneth J. Doka, PhD, is featured in the Helping Young People issue of Journeys - A Newsletter to Help in Bereavement. Journeys is published monthly by Hospice Foundation of America.

Myth 1. Children do not grieve, or only grieve when they reach a certain age. Children grieve at any age. The way grief is manifested will vary, depending on the child’s age, development and experiences. It is important to remember that children may grieve in ways different from an adult.

Myth 2. The death of a loved one is the only major loss that children and adolescents experience. Children and adolescents experience a range of losses. The loss of a pet, dreams, separations by divorce or relocations, losses of friends or relationships, or losses due to illness or death can generate grief reactions.

Myth 3. It is better to shield children from loss. They are too young to experience tragedy. Although we’d like to protect children from loss, it is impossible. Exclusion can increase fears and breed feelings of resentment and helplessness. It may isolate the child or adolescent at a time when they need the support of adults most.We can support, teach and model our own ways of adapting to loss and include rather than exclude children and adolescents.

Myth 4. Children should not go to funerals or children should always attend funerals.
Children and adolescents should have the choice as to how they wish to participate in funeral rituals. They will need information about the funeral, options on how they may participate, and support from caring adults as they make their choice.

Myth 5. Children get over loss quickly.
No one gets over significant loss. Children, like adults, will learn to live with the loss and may revisit that loss at different points as they go through life.

Myth 6. Children are permanently scarred by early, significant loss.
Most people, including children, are resilient. While loss can affect development, solid support and strong continuity of care can assist children as they learn to live with loss.

Myth 7. Talking with children and adolescents is the most effective approach in dealing with loss.
While there is much value in openly communicating verbally with children and adolescents, there are approaches that allow the child or adolescent creative ways of expression. Play, art, dance, music, activity and ritual are examples of creative modes of expression that they may use to express grief and adapt to loss.

Myth 8. Helping children and adolescents deal with loss is the responsibility of the family.
Families do have a critical responsibility. But it is a responsibility shared with other individuals and organizations such as hospices, schools, faith communities, as well as the community at large. In times of significant loss it is important to remember that the ability of family members to support one another can be limited.

Grief Camp Offers Support for Children of Deceased Military Personnel

The Seattle Post Intelligencer published an article about a TAPS camp (Tragedy Assistance Program for Survivors) for children of military personnel who have been killed in Iraq and Afghanistan. Sixty-two families in Fort Lewis took part in a day-long program that offered bereavement support for both adults and children. Learn more about TAPS and their role in support military families through grief on their website.

HFA's 2008 teleconference and book, Living with Grief: Children and Adolescents, will focus on the experience of grieving children and adolescents and how we can best support them during this time. "Military Children and Grief," written by a TAPS peer mentor, looks at how loss for children in the military community is different.

Published September 23, 2007

Family Structure Can Affect Grief

With more and more U.S. single parents, blended families and step and half-siblings, some are "shut-out" of an illness or funeral, a U.S. expert said. Diana Nash, a professor of psychology at Marymount Manhattan College in New York and a counselor specializing in grief and bereavement, said ex-spouses and first children of the deceased can be left out of an illness and funeral because the new family doesn't want them around.

Published September 24, 2007.

Children as Caregivers, the Burdens Placed on Kids with Chronically Ill Parents

This in-depth piece by Washington Post reporter Michael Alison Chandler looks at the role more and more children are playing as caregivers for their chronically ill parents. Chandles sites a 2005 survey by the United Hospital Fund and the National Alliance for Caregiving that shows as many as 1.4 million children in the United States from age 8 to 18 care for a chronically ill or disabled relative. The burden of caring for ill parents is having a huge effect on these children, and there are few public services to offer needed assistance.

Published August 25, 2007

Palliative Care for Children

MDLinx reports findings of a qualitative study investigating nurses involved in arranging children's palliative care services.

HFA's 2008 Living With Grief teleconference will focus on children and adolescents. Learn more here.

Published August 30, 2007.

The Role of Hospice for Children

This posting from the Redefining Hope blog articulates the role of hospice in caring for terminally ill children and their families.

HFA's 2008 Teleconference will focus on children and adolescents. Learn more on the HFA website.

Posted August 24, 2007.