Students' Web page helps grieving families

by Stephen Forgacs
Staff writer

An Internet home page created by two UBC nursing students will help B.C. parents deal with the loss of a child to cancer and gain access to support and resources a B.C.'s Children's Hospital social worker says.

Susan Schmitten, who co-leads a bereaved parents group at the hospital, said the Web newsletter fills a gap in services offered specifically to parents who have lost a child to cancer.

"The group of parents that I work with feel it is really important that families outside the Lower Mainland have access to the support of people with similar experiences," she said. "And although many people don't have computers at home, most have access to them and therefore to an expanded range of services through this home page."

Fourth-year students Elise Eriksson and Ronda Tuyp put together the home page as part of a clinical nursing course, Nursing Care of Children and Families, in which students work with a client group to address a specific issue.

Tuyp said that while support groups and services do exist for people dealing with the loss of a family member, there is little that addresses the experiences of parents and siblings who have experienced the loss of a child to cancer and the often lengthy treatment period that precedes it.

"Losing a child to cancer is one of the most devastating losses anyone can experience, both for the parent and for the sibling," Tuyp said.

Tuyp and Eriksson spent a clinical portion of their studies in the Oncology Unit at Children's Hospital from August to December last year. During that time they worked with families dealing with cancer treatment and interviewed parents who had lost a child. They also worked closely with Schmitten, a UBC social work alumna, and Cindy Stutzer, a clinical nurse specialist in the hospital's oncology program and clinical assistant professor with UBC's School of Nursing.

The students researched programs and services offered in the province and reviewed parent interviews and the minutes of the bereavement group's meetings to determine what gaps exist in the support available.

Gaps they identified include: people living in small towns and rural areas do not have access to the range of services; families often don't know where to look for support; limited support available during the very high stress period immediately following the child's death; and grief support not being specific enough to meet the needs of those who have lost a child to cancer.

Although Stutzer and Schmitten had considered creating a newsletter for some time, they had not found the time or resources to put one together and had not considered the Internet option. UBC Nursing Assoc. Prof. Judy Lynam, who teaches the fourth-year course, introduced the home page idea as an option in course projects.

"The Internet has tremendous potential in the field of health care," Lynam said. "And the kind of work that nurses do is often seen as being independent of technology or else dealing mostly with machines. This project is a means to explore the use of technology for a very human purpose, as a way to reach out to people."

Lynam said that, since neither student had much Internet experience, they worked with Gary Bowman of the School of Nursing on the technical aspects of the project.

"The home page option is a good way to introduce students to the Internet, and to have them learn first hand how it can be used," Lynam said.

Lynam, Eriksson and Tuyp are now working with Schmitten and Stutzer to determine how the home page can be maintained, refreshed and funded. The parents are also keen to see a "chat site" developed that would allow parents in different parts of the province to communicate with each other via computer.

"It's a great beginning for what can really be a provincial service. There's more to be done, but because of these two students, a project that has been on the `to do' list has been translated into something that is absolutely usable," Schmitten said.

The newsletter, When a Child Dies of Cancer, can be found under Student Projects on the School of Nursing home page at