Edmarc Hospice for Children

Established in 1978, Edmarc Hospice for Children was the first hospice in the nation designed specifically for children. Edmarc is the only pediatric hospice organization in Hampton Roads. Edmarc was founded by the members of Suffolk Presbyterian Church in Suffolk, Virginia, along with their minister who was dying of cancer, and a young couple whose only son was dying of a progressive neuromuscular disease. The minister's name was Edward; the boy's name was Marcus. The agency is named in their memory. In 1982, Edmarc Hospice for Children received a $300,000 grant from the Birthday Offering of the Presbyterian Women. This generous community gift funded the development and expansion of our hospice, home health care, and bereavement support services. Edmarc now serves a wide geographic area that includes the Virginia Peninsula and all of Southside Hampton Roads. Edmarc Hospice for Children is a United Way agency, serving children with life-limiting illness and their families, without regard to their ability to pay for services.

Mission Statement:

The mission of Edmarc Hospice for Children is to ease the trauma of a child's illness or death, and to reduce the disabling effects of pediatric illness, loss, and bereavement on families.

Vision Statement:

Edmarc Hospice for Children sees a community in which no child or family is denied pediatric hospice services and a society that wholeheartedly accepts and supports pediatric hospice care.

Program & Service Summary:

Edmarc's health care services allow a child with a life-limiting illness to stay at home whenever possible. Remaining at home helps alleviate some of the child's stress, and can make healthcare for the child less traumatic. But when a child is ill, Edmarc never forgets that the entire family is affected. Families who have a child with a life-limiting illness experience a high level of stress, including emotional, social, spiritual, and financial pressures. This stress often becomes debilitating to the entire family, sometimes resulting in dysfunctional family dynamics, financial hardship, and divorce. Numerous studies cite a divorce rate of 75% in families where a child has died. In Edmarc bereaved families, the marriage failure rate is less than 20%.

To help families cope, Edmarc offers a broad range of services to address not only the physical and emotional needs of the child, but the multi-dimensional needs of the family as well. Edmarc's home health, hospice, and bereavement support services are available to children and families 24 hours a day, 7 days a week. Since 1978, Edmarc's program has grown steadily, indicating a need for this unique type of care. Edmarc has served 733 families in Hampton Roads, and more than 2500 family members in the past 25 years.

To Learn More About Edmarc Hospice for Children

Call us weekdays at (757) 967-9251 during regular business hours, email us at edmarc@edmarc.org or write us: Edmarc Hospice for Children, 516 London Street Portsmouth VA 23704. We'd be happy to provide the information you're looking for.

Services provided by Edmarc Hospice for Children

Home Health & Hospice Care

Physician-directed care is delivered by registered nurses.
Nurses will assess a patient's status or perform a skilled procedure such as administer chemotherapy, give pain medications, or draw blood for testing.
Care is provided to the child in the comfort of their own home.
Nursing care is available to patients and families 24 hours a day, 7 days a week.

Patient & Family Support

Individual and group support is provided to patients, parents, and siblings by medical social workers.
Social workers can assist with coordinating financial resources and supportive services for families as indicated. Spiritual support is available for families upon request.
Funeral planning and resourcing is available.
We offer monthly patient and sibling support groups, socialization activities, and a kids' newsletter.
Staff members work with other local agencies such as Angel Flight to develop logistical support when patients must be transported for treatment in other locations.
Ongoing support is available for families as they cope with multiple grief issues.
Socialization activities are designed to enhance a family's coping skills and cohesiveness, and we encourage families to attend events such as the Easter egg hunt, family picnic, Halloween party, ice skating party, and multiple special events like baseball and hockey games.
A dedicated, caring group of volunteers provide one-on-one support for patients, siblings, and parents, both in the home and in the hospital.
Support from the community makes the holidays special, and with donations from generous individuals, corporations, and local organizations, we can share Thanksgiving and holiday food baskets for families in need, and home visits with caroling and gifts for every family member.

Bereavement Support

Edmarc offers one-on-one support for bereaved families including home visits and telephone calls, as well as customized educational materials about the grief process for each family, based on their needs.
Staff members maintain personal contact with families on significant anniversaries such as the child's birthday, date of death, Mother's Day, and Father's Day.
We offer support groups for mothers, fathers, and families.
All families are invited to take part in our Annual Remembrance Service.
Families are invited to Camp MAGIC (My Active Grieving Instills Courage), a weekend away for bereaved families.
Families who have lost a child are invited to our bereaved parents retreat weekend and can receive our bereavement newsletter if they choose.
Our Peace by Piece program is open to any grieving child or teen in Hampton Roads.

People Served by Edmarc Hospice for Children

Patients:

Nursing care by registered nurses delivered in the child's home, with on-call availability 24 hours a day, 365 days a year.
Medical social work services delivered in the child's home, with hospital follow-up, including counseling and spiritual support when requested.
Kids Can Cope support group for ill children and their siblings. Kids Can Cope is designed to help children recognize their feelings, develop good coping skills, learn to adapt to the changes occurring within their family, and receive peer support from other children in similar situations.

Siblings:

Kids Can Cope (see description above)
Peace by Piece bereavement program where children participate in art therapy and group sessions with other kids their age who have also experienced the loss of a parent, sibling, grandparent, or other significant loss.

Parents:

Medical social work services include emotional support, spiritual support, funeral planning and financial resourcing.
Support groups for bereaved families, including mothers groups and fathers groups, bereaved parents retreat weekends, and couples groups.

Families:

Family events held throughout the year, including the Easter Egg Hunt, family picnic, Beat the Heat ice skating party, Evening at the Farm, Halloween party, and Christmas caroling.
Holiday support through food baskets at Thanksgiving, and food baskets and gifts for family members at Christmas. All items are donated by and delivered to families' homes by volunteers.
Annual Remembrance Service for all families who have experienced the death of a child.
Camp MAGIC, a bereaved families camping weekend, held in the summer.

Collaborative Efforts

Edmarc staff members work with other organizations across Hampton Roads to provide comprehensive support to children and families in our program:

Children's Hospital of the King's Daughters and Portsmouth Naval Hospital, to ensure that children receive the continuity of care they need and intervention can begin in a timely manner.
Make-A-Wish Foundation, in screening and determining eligibility for children who may have a wish fulfilled.
American Cancer Society and the National Children's Cancer Society, to get financial resources, special nutritional supplies educational materials, family support, and transportation resources for children with cancer.
American Red Cross in meeting needs of military families, especially in locating resources for funeral expenses and logistics, helping to get relatives home when a patient is critical, and in financial planning.
Jewish Family Services of Tidewater in partnership to provide a support group, Peace by Piece, for grieving children and teens throughout Hampton Roads.
Lee's Friends for families facing financial hardship or transportation issues.
Angel Flight, when patients and families need free airline travel for special medical procedures and bone marrow transplants at nationally recognized medical centers outside Virginia.
LifeNet for professional education on the death and dying process, and to teach skills on caring for caregivers.
First Hand Foundation, a private foundation providing financial support for medical needs including wheelchairs and other equipment for children with severe or life-limiting illness.

In addition to these nonprofit agencies and foundations, Edmarc Hospice for Children works extensively with other organizations such as the Social Security Administration, the public school systems in Chesapeake, Norfolk, Virginia Beach, Portsmouth, Suffolk, Newport News, and Hampton, and the Community Social Services Board to coordinate vital services and financial support for our patients and their families.

Reviewed 05/2004

General Information: edmarc@edmarc.org