Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A. ORIGINAL TOOLS FROM FEATURED INNOVATORS

The Prevention Research Center at Arizona State University

B. RESOURCES AND WEBSITES RELATED TO THIS ISSUE'S CONTRIBUTORS:

From St. Christopher's Hospice

Three booklets authored by the department of Social Work and published by St. Christopher's Hospice in London, England, referred to by Frances Kraus in her interview: [Return to International Perspectives]

Someone Special has Died. A booklet for children up to 12 years old; it is illustrated, with simple text the children themselves can read.

Someone Close to you has Died. A booklet for young people ages 13+ with photographic illustrations and clear, simple text.

Someone has Died Suddenly. A booklet for parents, carers, and children bereaved by a sudden or unexpected death, with photographic illustration and clear simple text.

To purchase from St. Christopher's Hospice bookshop (£2.00 each), please contact

Jan Smith, Library Assistant/Bookshop Administrator
Halley Stewart Library
St Christopher's Hospice
51-59 Lawrie Park Road
Sydenham
London SE26 6DZ
Phone: +44 (0)181 778 9252
Fax: +44 (0)181 776 9345

Arizona State University, Prevention Research Center
http://asuprc.la.asu.edu/
The Prevention Research Center (PRC) was established in 1984 to develop, evaluate, and disseminate prevention programs for children and families in high stress situations. It is one of four research centers funded by the Prevention Branch of the National Institute of Mental Health. Research at the Center focuses on children and families experiencing four different stressors: parental divorce, poverty, bereavement, and parental job loss. The Family Bereavement Program, featured in this issue, is part of the PRC and is directed by Dr. Irwin Sandler.

Association for Death Education and Counseling
http://www.adec.org
Professional organization for therapists, educators, and researchers working in the field of grief and loss. ADEC provides introductory, intermediate, and advanced training opportunities for professionals from a variety of disciplines.

Death Studies
http://www.taylorandfrancis.com/E-pub
Leading peer-reviewed journal of research and practice relevant to death, dying, and bereavement.

The Hospice Information Service at St. Christopher's Hospice
www.hospiceinformation.co.uk/
St. Christopher's Hospice hosts this site to provide information on hospices and palliative care in the United Kingdom.

University of Memphis, Home Page of Robert A. Neimeyer, PhD
http://neimeyer.psyc.memphis.edu
Dr. Neimeyer, guest editor of this issue of Innovations on Coping with Loss, is a Professor of Psychology at the University of Memphis, in Memphis, Tennessee, where he also maintains an active private practice.

C. OTHER RELEVANT WEBSITES:

The resources for this issue Coping with Loss are largely geared toward families and communities who are grieving together in times of trauma, illness, and sudden loss. A few of the following sites were created in response to the events of September 11. Additional valuable resources addressing basic grief and bereavement needs can be found on the Resources and Tools page of the May-June 2001 issue of Innovations entitled On Grief and Bereavement.

American Academy of Pediatrics
http://www.aap.org/advocacy/releases/cad.htm
The American Academy of Pediatrics has compiled its resources and materials on disasters, bioterrorism, and psychological support of children.

AARP Grief and Loss Programs
http://www.aarp.org/griefandloss/
AARP (American Association of Retired Persons), a nonprofit advocacy organization, offers an array of resources for bereaved persons. The information is organized into five categories: For Families and Friends, Helping a Parent or Loved One, For the Professional, Resources, and Volunteer Opportunities. Each section offers an array of practical advice and personal insight intended to help answer some difficult questions.

American Psychological Association Online
http://www.apa.org
This site includes several pages relevant to the new end-of-life initiative, traumatic stress, as well as resources to address the September 11th tragedies.

American Red Cross
http://www.redcross.org
Central agency for dealing with widespread trauma and disasters; provides training to first responders and mental health volunteers.

Band-Aides and Blackboards
http://www.faculty.fairfield.edu/fleitas/contents.html
Joan Fleitas, a nursing educator at Fairfield University in Connecticut, has put together this information to help elementary school children and teens cope with chronic, serious medical problems. The site is organized with age-appropriate links. Parents and teachers will find background information and suggested classroom activities to help everybody deal with pediatric medical problems.

Bereavement Magazine: A Journal of Hope and Healing
http://www.bereavementmag.com/
Designed to be "a support group in print," Bereavement Magazine is a bimonthly publication that includes articles, stories, and poetry from the bereaved themselves. There are also regular departments in the magazine written by professionals who are eminent in the field of grief intervention. Articles address physical and mental health issues, the psychology of mourning, ecumenical faith and cross-cultural perspectives, the grief of children, and humor.

Beyond Blame: Reacting to the Terrorist Attack
http://www2.edc.org/beyondblame/beyondblame.pdf
In response to the events of September 11 and subsequent reactions against Arab-Americans, Education Development Center, Inc. (EDC) has developed a free 30-page curriculum for middle and high school students focused on issues of justice and mislaid blame. The program was designed by a team of researchers and curriculum writers and is co-sponsored by the Justice Project and the Vietnam Veterans of America Foundation. The curriculum is available in both English and Spanish. Note: you need to have the Adobe Acrobat Reader (version 3 or higher) installed on your computer to download this free curriculum. You can download the Acrobat Reader (for free) from the Adobe site at http://www.adobe.com/products/acrobat/readstep2.html A hard copy of the curriculum is also available by calling (617) 618-2700.

Center for Loss & Life Transition
http://www.centerforloss.com/
The Center for Loss is a private organization dedicated to furthering the understanding of grief. Its mission is to help both the bereaved, by walking with them in their unique life journeys, and bereavement caregivers, by serving as an educational liaison and professional forum. Founded in 1983 by Dr. Alan Wolfelt, author, educator, grief counselor, and faculty member at the University of Colorado Medical School's Department of Family Medicine, the Center serves its mission through a combination of workshops and publications. The Center's GriefWords library at http://www.centerforloss.com/library/centerforloss/contents.asp contains 50+ articles on grieving and is arranged by audience and topic.

Center for the Advancement of Health
Grief Research: Gaps, Needs and Actions
http://www.cfah.org/programs/grief_research.cfm
The Grief Research: Gaps, Needs and Actions project is part of larger initiative undertaken by the Center for the Advancement of Health, with funding from the Project on Death in America (PDIA), to assess the state of the grief and bereavement field. The project will make recommendations to PDIA for the next steps that can be taken to build capacity in the field; develop and support leaders in research and practice; and build effective partnerships between researchers, participants, and policy-makers.

Compassionate Friends
http://www.compassionatefriends.org
The Compassionate Friends is a nonprofit, self-help support organization that offers friendship and understanding to bereaved parents, grandparents, and siblings. The mission of the Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.

Counseling for Loss
http://www.counselingforloss.com
A place for bereaved people throughout the Internet community to access information, exchange ideas, and share their own personal experiences in regard to the grieving process.

Families Helping Families
http://www.jennadruck.org/
Families Helping Families (FHF) provides comprehensive support services to bereaved families who have experienced the death of a child. Based in San Diego, California, its programs are offered at no cost and include individual and family consultations, support groups, workshops, a sibling bereavement program, community education, and referral services.

Final Thoughts
http://www.finalthoughts.com
In the Grief and Loss department, Final Thoughts presents a collection of articles and coping strategies and works to dispel myths centered around grieving.

Finding Our Way
Living with Dying in America
http://www.findingourway.net/
Finding Our Way is a series newspaper articles that serve as a short course on death and dying in America.

Grief and Loss in the Workplace
http://www.umich.edu/~hraa/griefandloss/index.html
This program is part of the Faculty and Staff Assistance Program at the University of Michigan. It includes guidelines for managers, supervisors, and co-workers in dealing with workplace loss from a personal crisis, sudden death, chronic or terminal health problems, or job termination.

GriefLink
http://www.grieflink.asn.au/frameset.html
GriefLink is a haven of educational and practical information for many types of relationship losses (e.g., stillbirth, gay partner) stemming from a wide variety of occurrences (e.g., organ donation, workplace) and among a range of groups (e.g., Vietnam veterans, indigenous grief). The site was developed as a joint project between the National Association for Loss and Grief (NALAG) and the Department of General Practice at the University of Adelaide in South Australia.

GriefNet
http://www.griefnet.org
GriefNet is a nonprofit Internet community of persons dealing with grief, death, and major loss. The site is home to 37 different e-mail support groups geared toward a diverse community of bereaved persons. GriefNet's companion site, http://www.kidsaid.com/ is a safe environment for kids and parents to find information and ask questions. Both sites are supervised by Cendra Lynn, PhD, a clinical grief psychologist, death educator, and traumatologist based in Michigan.

Growth House
http://www.growthhouse.org/death.html
GrowthHouse is a search engine that offers access to a comprehensive collection of reviewed resources on all aspects of end-of-life care. The link to Grief and Bereavement is a springboard for finding books, online resources, and support groups pertaining to loss.

Helping.org
http://www.helping.org
In addition to providing a robust list of coping resources, Helping.org also offers links to charities and nonprofit organizations that help care for people coping with loss and tragedy.

Hospice Foundation of America
http://www.hospicefoundation.org
The Hospice Foundation of America is a nonprofit organization that promotes hospice care and works to educate professionals and the families they serve in issues relating to caregiving, terminal illness, loss, and bereavement. They have compiled a list of resources that focus on grief after sudden or traumatic loss and can be found at http://www.hospicefoundation.org/sudden.htm

Innovations in End-of-Life Care, On Grief and Bereavement, Vol. 3, No. 3.
http://www2.edc.org/lastacts/archives/archivesMay01/default.asp
The May 2001's issue of Innovations was "On Grief and Bereavement." See its Resources and Tools page for additional sites.

International Association for Traumatic Stress Studies
http://www.istss.org
This site has resources on the psychology and biology of trauma and its treatment.

International Work Group on Death, Dying, and Bereavement
Contact RBendiksen@aol.com for more information. This is a professional organization for leaders in field of death and loss. This group formulates "assumptions and principles" documents to guide intervention in disaster and other contexts, ranging from hospice to violent death.

Little Hero
http://www.littlehero.com/
This site is a resource for families with premature or sick infants in the Neonatal Intensive Care Unit (NICU), as well as families experiencing neonatal loss. The authors have twice experienced such loss and bring a personal commitment to helping parents, families, doctors, and nurses cope and support one another. There is also an online store that sells special remembrance books for babies in the NICU or who were miscarried or stillborn.

Love, Josh
www.nhpco.org/LoveJosh
The fifth documentary in HBO's Family Parent Handbook series, Love, Josh documents a year in the life of a 15-year-old whose father has died from liver cancer. The National Hospice and Palliative Care Organization website includes resourcful information related to this documentary for teens, parents, educators, and counselors and contains a print-friendly resource guide www.nhpco.org/index.cfm?weburl=/public/articles/index.cfm?Cat=137&CFID=1552945&CFTOKEN=17783906.

National Association of Elementary School Principals
http://www.naesp.org/sept11-01.htm
In response to the September 11^th attacks, the National Association of Elementary School Principals has put together this list of resources to assist staff, parents and students in coping with loss, safety preparedness, support/donations, and teaching tolerance.

National Hospice and Palliative Care Organization
http://www.nhpco.org/
The National Hospice and Palliative Care Organization (NHPCO) has made available for download, a new guide "Trauma and Grief Resources in the Aftermath of September 11th" that is available in PDF format. In addition, this site has four grief and bereavement guides related to death in the workplace. The four guides are: A Guide to Grief; When a Co-Worker Suffers a Loss; When a Co-Worker is Ill or Dies; and Grief: A Guide for Managers. (Adobe Acrobat Reader is required to retrieve these documents. Download Acrobat for free at www.adobe.com/products/acrobat/readstep2.html)

National Mental Health Association
http://www.nmha.org/reassurance/coping.cfm
The National Mental Health Association (NMHA) is the oldest and largest nonprofit organization in the United States that addresses all aspects of mental health and mental illness. In addition to providing practical advice for children and adults, whether they're coping with loss while in school or at the workplace, NMHA provides a resource to help grieving individuals determine when it might be time to seek outside help.

National Organization for Victim Assistance
http://www.try-nova.org
Professional organization for assisting victims of crime and disaster.

New England Center for Loss & Transition
http://www.neclt.org/
New England Center for Loss & Transition is a nonprofit organization dedicated to training professionals in topics of grief, loss, and transition. The Center sponsors seminars and in-service trainings for social workers, counselors, nurses, educators, clergy, business personnel, and others working in the field of bereavement or affected by grief and loss. The Center also founded The Cove, a support program for grieving children and their families, located at several sites in Connecticut. There is a list of numerous children's grief support programs and telephone numbers organized by state at http://www.neclt.org/kidsgroups.htm

Recover: Support for Survivors of Sudden and Traumatic Deaths
http://www.lossandhealing.org/recover.htm
Recover, a collaborative program of the William Wendt Center for Loss and Healing and the District of Columbia Office of the Chief Medical Examiner (OCME), places experienced, professional grief counselors in the OCME to guide survivors of sudden deaths through the process of grief. A unique approach to service and prevention, Recover endeavors to intervene in the cycle of violence by empowering grieving children and their families to cope with their anger and grief following a sudden or traumatic loss.

WidowNet
http://www.fortnet.org/WidowNet/
WidowNet is an information and self-help resource for, and by, widows and widowers. Topics covered include grief, bereavement, recovery, and other information helpful to people of all ages, religious backgrounds, and sexual orientations who have suffered the death of a spouse or life partner.