Text Size

  • Increase
  • Decrease
  • Normal

Current Size: 100%

August 2005

Welcome

Stacy Orloff
stacyorloff@thehospice.org

Welcome to the Children%27s Project on Palliative/Hospice Services%27s (ChiPPS) third newsletter.  We thank everyone who has taken the time to offer feedback, support, and suggestions regarding the newsletter.  One of our primary goals is that you, the reader, will offer ideas and suggestions regarding the content- both current and future.  What ideas do you have for themes?  Send me an e-mail.  We especially want to publicize conferences that you%27re aware of.  Please send that information to Sandy Macomber.  You%27ll find her e-mail address in this newsletter under the education section.   In fact, all the section writers have included their e-mail addresses in hopes you%27ll communicate directly with them about their sections.  We want to address topics that will help all of us do this work better.  What information will assist you in doing so?

As in previous issues, we have selected a theme for this edition.  We felt it important to recognize the special needs of bereaved siblings.  Often called the ‘forgotten mourners%27, siblings may be less included in the professional plan of care as well as in what was ‘the every day life%27 of the family.   We will highlight several aspects of working with bereaved siblings.  We begin an insightful article by Dr. Betty Davies.  Dr. Davies is a leading international expert on sibling loss and she shares with us a review of some of her research findings.  I encourage you to read this article and, if you don%27t have it already, purchase a copy of Betty%27s book, Shadows in the Sun.  It is an excellent resource for anyone working with bereaved siblings. 

We%27re very proud to share some thoughts from bereaved siblings. Through poetry, discussion, and thoughtful sharing, these brave young men and women have much to teach us. 

We%27re also very lucky to have an article by Dr. Charles Corr.  Dr. Corr is also an internationally known expert in end of life care with children and, in fact, developed and taught the first full-term, credit-bearing, college-level course on Children and Death in 1977.  He is an educator who has taught courses on death, dying, and bereavement, along with writing and presenting in this field, since 1975.  One of Chuck%27s areas of expertise is children%27s grief literature and he shares this wealth of information in this newsletter. 

You%27ll also see that our regular features also reflect some aspect of sibling loss.  Make sure you read our Frequently Asked Questions and Unique Programs and Projects sections.  Our Pain Column addresses some of the more commonly used scales and our education section addresses national and regional conferences as well as calls for proposals. 

Sibling Bereavement
Echoes of each other%27s being.
Whose eyes are those that look like mine?
Whose smile reminds me of my own?
Whose thoughts come through with just a glance?
Who knows me as no others do?
Who in the whole wide world is most like me
Yet not like me at all?
My sibling.

(Faber & Mazlish, 1989, p. 114)

From the time that a new baby enters the family, a special bond develops between the children.  Siblings protect one another, support one another, and ally together against parents and others.  Siblings play significant roles in each other%27s lives, and a sibling%27s death can be traumatic for brothers and sisters left behind.  In fact, siblings%27 stories indicate that the impact of such a death lasts a lifetime, perpetually influencing their ways of being in the world. 

Not all siblings are affected to the same degree by a child%27s death.  Parents, in fact, need to be advised that each child in the family will react differently.  Many factors come into play to affect children%27s grief responses.  Individual sibling characteristics come into play – for example, the child%27s age and gender, health status, temperament or coping style, and previous experience with loss.  As well, situational factors must be considered. These include characteristics of the situation itself, such as duration of illness, cause of death, where the death occurred, and the degree to which children were involved in the events pertaining to a brother or sister%27s illness, death, and related events.  Bereaved children who were actively involved in the care of their sibling or in planning of the funeral or of related events have been shown to have fewer behavioral problems than children who were excluded from such activities.  Of course, giving children a clearly informed choice about whether or not they want to be involved is key.  Finally, psychosocial environmental factors have an enormous impact upon sibling grief.  The nature of the pre-death relationship, for example, is critical.  When children have shared many aspects of their lives, the loss of one child leaves a large empty space in the surviving sibling.  When two children share a particularly close relationship, the empty space is even larger.   The family environment also significantly impacts upon grieving siblings.  For example, in families where communication is more open than closed, feelings, thoughts, and ideas are more freely expressed; a sense of cohesion or closeness exists, and bereaved siblings exhibit fewer behavioral problems.  Since families do not live in social vacuums, their culture and community values and priorities also impact sibling bereavement.  However, whether within the family or outside of the immediate family, it is the interactions siblings have with the adults in their lives that are critical. 

Thinking of sibling responses with the words that brothers and sisters themselves have used to describe their experience offers guidance in our interactions with grieving siblings.

“I hurt inside.”  This response includes all the emotions typically associated with grief that arise from the vulnerability of being human, of loving others and missing them when they are no longer with us.  The hurt siblings feel includes sadness, anger, frustration, loneliness, fear, irritability, and all the many other emotions that characterize grief.  Unlike adults who often talk about their emotional responses, children are often unable or inexperienced at identifying what they are feeling.  Rather, we have to look for changes in their behavior.  For example, some siblings also are nervous, and others act out by not listening to their parents or becoming irritable and belligerent.  Some may experience sleep disorders; many experience loss of appetite or overeating.  Changes in schoolwork are also common – not just declining performance, but overachievement may be a sign of a child trying to fulfill unrealistic self-imposed expectations.  It is important to remember that we are looking for persistent changes in the child%27s behavior and for a pattern of problems; no one behavior by itself is necessarily an indication of trouble.   And, a child%27s death also holds potential for growth in siblings, as evidenced by competence on handling adversity and confidence in facing death and helping others. 

For children who “hurt inside,” the goal is to help children accept whatever emotion they experience and to manage those emotions in appropriate ways.  This is easier said than done.  Since children seldom verbalize their thoughts and feelings – at least not in adults%27 terms – it%27s important that caring adults watch for changes in the child%27s behavior and respond sensitively.  Children who are hurting inside need comforting and consoling.  They do not need lectures, judgments, teasing, or interrogations.  Rather, they need someone who is consistent and honest, and who is willing to share their own thoughts and feelings with the child.  Helping children who “hurt inside” is a two-way process. 

The other three response categories are rooted in a different kind of vulnerability – the kind that arises from children%27s dependence on adults for information, inclusion, and validation.  Therefore, how adults respond to siblings%27 hurt contributes to the degree to which siblings experience these other responses. 

“I don%27t understand.”   How children begin to make sense of death depends in large part on their level of cognitive development.  However, once children know about death from personal experience, their worlds are forever altered.  Children growing up today in the midst of television coverage of war and terrorism scenes are all too aware of the reality of death.  But such awareness only compounds their confusion if they are not helped to understand and, in their own way, make sense of death and related events.   As siblings grow and develop new ways of viewing and understanding the world, they will have questions about the death.  Each new phase of development will bring more questions and the desire to go over the story yet again.  This is a normal phenomenon, and not a sign that the child is “dwelling” on the death.

To help children who “don%27t understand,” adults need to remember that confusion and ignorance are additional forms of hurting.  Therefore, adults must continue to comfort and console.  Adults have a responsibility to be aware of what children understand, and to offer honest explanations that fit with the children%27s developmental capabilities.  Caregivers must be open to children%27s questions, giving them the freedom to ask whatever they want without fear of ridicule.  Helping children understand is not just providing information about facts and events; it is also giving information about feelings, about what to expect, and about what not to expect.  Teaching them about the reality of death and all the feelings and questions that arise is key.

“I don%27t belong.”  A death in the family tears apart the normal day-to-day patterns of family life.  Parents are overwhelmed with their grief; siblings are also overwhelmed with the flurry of activity and the heaviness of emotion that surrounds them.  Siblings do not know what to do or how to help, and if they try, their efforts may not be acknowledged.  Siblings begin to feel as if they are not part of what is happening.  Over time, as roles and responsibilities realign within the family, siblings may feel as if there is no place for them anymore. They may find solace outside of their family, but often their experience with death makes siblings, particularly adolescents, feel very different from their peers.  They feel as if “I don%27t belong” within their family and with their friends as they once did.  Adults can do much to prevent siblings from feeling as if they “don%27t belong.”  Encouraging children to help in some way in the activities of caring for an ill brother or sister, or involving them in the rituals surrounding death is reasonable when individual choices are also respected. 

“I%27m not enough.”  Siblings typically want to make their parents feel better, but no matter what they do, their parents%27 sadness persists.  On top of this, some siblings feel as if the child who died was their parents%27 favorite child and they may feel they should have been the one to die. Often, such feelings of inferiority were present before the death but are only compounded after the death when parents direct intense emotion and longing towards the deceased child.  No matter what they do or say, surviving siblings cannot seem to make their parents happy again.  They feel as if “I%27m not enough.”  Such siblings do not feel special in their parents%27 eyes.  Contributing to feeling less worthy is a child%27s sense of responsibility for the death or feeling displaced by the addition of other children to the family, particularly when the grieving child perceives the new child as a substitute for the one who died.  A sibling can interpret this as if he or she was “not enough”; otherwise, why would mom and dad need another child? 

Helping siblings to feel as if they are valued, loved, and considered to be special by the adults in their lives is the best way to help children avoid feeling as if they are “not enough.”  Validating their worth, not necessarily for their accomplishments, but for just being in the world, is integral to making children feel they are special in the lives of the adults who are closest to them.  If adults interact with bereaved siblings in ways that comfort their hurt, clarify their confusion, and involve them in what is happening, it is unlikely that bereaved siblings will feel as if they are “not enough.”

I have often asked siblings what advice they have for adults who want to help grieving children.  They inevitably respond, “Don%27t forget the brothers and sisters!”  Their words capture well the most important message.  Though sibling grief may be a difficult, long, and lonely journey, it is not one which siblings must travel alone if the significant adults in their lives acknowledge the impact of sibling bereavement and are willing to walk alongside them on their journey, comforting and consoling, teaching, involving, and validating. 

References

Davies, B. (1999).  Shadows in the sun: Experiences of sibling bereavement in childhood.  Philadelphia, PA: Brunner/Mazel. 

Faber, A. & Mazlish, E. (1989).  Between brothers and sisters: A celebration of life%27s most enduring relationship.  New York: Avon Books.

News from the Children%27s Project on Palliative/Hospice Services
Sue Huff                                                         Stacy Orloff
shuff@palliativecare.org                              stacyorloff@thehospice.org

We%27re proud to serve as co-facilitators of the ChiPP%27s leadership advisory council.  We%27ve had a very busy year thus far and would like to share some of our progress with you. The ChiPPS leadership advisory council has identified its strategic priorities for the new year.  In order to achieve its goals two distinct workgroups have been developed.  Dr. Suzanne Toce is facilitating a workgroup developed to identify strategic partners and create ways to increase collaboration.  Efforts are well underway.  If you%27d like more information about this workgroup contact Suzanne at sstoce@gundluth.org

Dr. Charles Corr and Dr. Stacy Orloff co-chair the education workgroup.  This workgroup has primarily focused on publishing this newsletter. With three newsletters completed, this workgroup is ready to expand its efforts.  If you%27d like more information about this workgroup contact Chuck at charlescorr@mindspring.com or Stacy at stacyorloff@thehospice.org

Other efforts from ChiPPS include:  revising the NHPCO program standards to include special pediatric needs, reviewing research opportunities for pediatric hospice and palliative care, increasing ChiPP%27s visibility through enhanced NHPCO web site accessibility, and investigating possible revisions to NHPCO%27s current surveys to make them more pediatric ‘friendly.%27  Would you like to be involved in any of these projects?  If so, please contact Sue or Stacy. We%27re eager to hear from you.

Educational Opportunities

Sandy Macomber
smacomber@hospice-swf.org

Here are some educational opportunities that are available in a variety of forms.  Please send information about any conference, lecture, new educational resource you%27d like for us to publicize to my e-mail address. 

  • The 28th Annual Conference of the Association for Death Education and Counseling (ADEC) will be held at the Tampa Marriott Waterside Hotel and Marina in Tampa, Florida, from March 29 through April 2, 2006.

ADEC has recently issued a Call for Abstracts for concurrent sessions in the program of this meeting.  Abstracts are to be submitted online to www.adec.org/abstracts between July 15, 2005, and midnight CDT August 16, 2005.  Abstracts must reflect one of the following presentation types: research reports, scholarly papers, practice reports, symposia/panel discussions, experiential workshops, personal experience and reflection, or poster presentations.  Additional information about requirements for submitting abstracts (which must be followed precisely) is available at www.adec.org.  For those who do not have Internet access, the ADEC Headquarters Office can also be contacted by telephone at 847-509-0403 or by fax at 847-480-9282.

  • The 17th World Congress sponsored by Children%27s Hospice International (CHI) will be held in Salt Lake City, Utah, from September 29 through October 2, 2005.Information is now available at www.chionline.org and early bird registration has been extended until July 22nd.
  • The 9th Annual Interdisciplinary Approach to Symptom Control, Palliative and Hospice Care, featuring the Palliative Care Board Review for candidates eligible for The American Board of Hospice and Palliative Medicine, will be held in Houston, Texas on October 14-16, 2005.  This conference is sponsored by The University of Texas M. D. Anderson Cancer Center, Department of Palliative Care and Rehabilitation Medicine.  For additional information, contact Jennifer Anderson, Department of CME/Conference Services at JAAnders@mdanderson.org.
  • For further information on the ELNEC Project, please check the website at www.aacn.nche.edu/ELNEC or contact Pam Malloy at pmalloy@aacn.nche.eduor call 202-463-6930, extension 238.

Books

The following books focus specifically on sibling bereavement. They aim to inform and guide professionals and parents in their interactions with children, adolescents, and other adults who have experienced the death of a brother or sister.

Barber, Erika R. (2003). Letters from a Friend: A Sibling%27s Guide for Coping and Grief. Amityville, NY: Baywood. Paperback; 186 pages.

  • This workbook by a child life specialist workbook contains a wide variety of therapeutic activities (games, creative writing, and drawing exercises) designed to help children and adolescents who have experienced the death of a brother or sister. The book can be used by older children on their own, by younger children with assistance, as a catalyst for communication within families, and as a therapeutic tool by professionals. Pages can easily be removed or personalized to become a lasting journal or memory book.

Davies, Betty. (1999). Shadows in the Sun: The Experiences of Sibling Bereavement in Childhood.  Philadephia: Brunner/Mazel. Hardbound; 256 pages.

  • This is the premier book for professional readers in the field of sibling bereavement. It represents an impressive combination of insightful caring, informed scholarship, rigorous research, and practical utility. The author is uniquely qualified as a guide on the basis of her own extensive program of research in various aspects of this subject, her appreciation of immediate, short-, and long-term responses to this type of bereavement, and her thorough familiarity with research and literature in the field. The final chapter is particularly worth reading as a synthesis of all that has gone before into a comprehensive model of sibling bereavement and a set of guidelines for caring adults.

DeVita-Raeburn, Elizabeth. (2004). The Empty Room: Surviving the Loss of a Brother or Sister at Any Age. New York: Scribner. Hardbound, 240 pages.

  • The author is a science journalist who experienced her brother%27s diagnosis with aplastic anemia in 1972 and his death 8 years later. Here she traces the impact of those experiences and adds extensive interviews with other siblings who have encountered the death or a brother or sister.

Farrant, Ann. (1998). Sibling Bereavement: Helping Children Cope with Loss. New York & London: Continuum International Publishing Group. Paperback, 144 pages.

  • In this book, adults look back on their experiences of childhood sibling bereavement.

Linn-Gust, Michelle. (2001). Do They Have Bad Days in Heaven: Surviving the Suicide Loss of a SiblingAlbuquerque, NM: Chellehead Works (

1711 Solano Drive, NE, Albuquerque, NM87110
; tel. 505-266-3134; chelleheadwords@aol.com).

  • When the author was a junior in college, her younger sister ended her life by walking in front of a train. That awful experience eventually led to Michelle%27s exploration of the subject of sibling bereavement through suicide and the writing of this book.

Richer, Elizabeth. (1986). Losing Some You Love: When a Brother or Sister Dies. New York: Putnam. Hardbound, 80 pages.

  • This book reflects the viewpoints of 16 youngsters between the ages of 10 and 24 who recall their experiences with the loss of a sibling.

Smith, Alison. (2004). Name All the Animals: A Memoir. New York: Scribner. Hardbound, 336 pages.

  • The author%27s brother, Roy, died in a car accident at the age of 18 when she was 15. Here she traces the impact of that death on herself and her family for the first three years after her brother%27s death (that is, until she reached the age at which Roy died).

There is, of course, a much larger body of literature on childhood bereavement of all types and on helping bereaved children. Without venturing too far into that flood of books and booklets, here are just a few titles.

Turnbull, Sharon. (1990).Who Lives Happily Ever After? Omaha, NE: Centering Corporation. Paperback, 16 pages.

  • This brief handbook is intended for families whose child has died violently. It offers information about grief, the media, and the judicial system. Other topics include physical aspects of grief and how to talk to children and teens.

Johnson, Joy 1999). Keys to Helping Children Deal with Death and Grief. Hauppage, NY: Barron%27s Educational Series. Paperback, 179 pages.

Kroen, William C. (1996). Helping Children Cope with the Loss of a Loved One: A Guide for Grownups. Minneapolis: Free Spirit Publishing. Paperback, 101 pages.

Silverman, Phyllis R. (2000). Never Too Young to Know: Death in Children%27s Lives. New York: OxfordUniversity Press. Paperback, 271 pages.

Finally, The Dougy Center: The National Center for Grieving Children and Families (3909 S.E. 52nd Avenue, P.O. Box 86852, Portland, OR 97286; tel. 503-775-5683; www.dougy.org; e-mail to help@dougy.org) has a very useful series of booklets, which includes titles such as Helping Children Cope with Death (1997), Helping Teens Cope with Death (1999), Helping the Grieving Student: A Guide for Teachers (1998), and When Death Impacts Your School: A Guide for School Administrators (2000).

Web sites

Here are a few of many available websites.

Bereavement Magazine
www.bereavementmag.com; 1-888-604-4673

  • A magazine for all those who are bereaved.

Boulden Publications
www.bouldenpublishing.com; 1-800-238-8433

  • Materials to help adults discuss difficult subjects, such as death, with children.

Centering Corporation
www.centering.org; 1-402-553-1200; Joy & Marv Johnson

  • Comprehensive site for literature on grief and difficult life situations; many good items for and about children.

Compassionate Friends
www.compassionatefriends.org; 1-877-969-0010  Colorado: www.tcfcolorado.org

  • National self-help group run by bereaved parents; many local chapters; web sites offers various “chat” opportunities.

The DougyCenter: The NationalCenter for Grieving Children and Families
www.dougy.org; 1-503-775-5683

  • A national center for grieving children that offers information, education, and support for children and adults, along with a variety of published materials.

Fernside
www.fernside.org

  • Informative site which includes ideas and activities to assist children and teens with their grieving.

GriefNet
www.griefnet.org

  • Internet community of 30+ e-mail support groups; bibliographies available; also has a companion site for kids: KIDSAID.

Healing Hearts
www.healingheart.net

  • Site for bereaved parents; can make pen-pal connections; also offers grandparent support.

Parents of Murdered Children
www.pomc.com; 1-888-818-POMC (7662)

  • For families and friends of those who have died by violence.

The MISS Foundation
www.missfoundation.org

  • The MISS Foundation is a nonprofit, 501(c)3, international organization providing immediate and ongoing support to grieving families; a goal of the Foundation is to reduce infant and toddler death through research and education.