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Parents of Children with Complicated Illnesses: Finally Being Empowered?

Unique May 7 Conference Teams Parents with Medical Professionals for Improved Care

BOSTON (April 14, 2004) — A unique New England conference to help beleaguered parents of children with life-threatening illnesses play a greater role in their care, will be held Friday, May 7 at Simmons College.

The conference will run from 8 a.m. to 4 p.m. in the third floor conference center at Simmons's Main College Building, 300 The Fenway.

The "CarePoints" program, housed at the Simmons College School of Health Sciences and coordinated jointly with Wheelock College, is an attempt to promote better parent-professional communication to enhance the quality of life for children with life-threatening, complex conditions.

The CarePoints conference is designed to give parents a forum to talk honestly and directly with caregivers, to address how families' needs are ignored or met and how their lives can be improved. The conference will help parents to develop leadership, networking, resources and advocacy roles in the care of their children while helping care providers to better understand and address these families' needs.

"Too often, parents are overwhelmed, and the busy family pediatrician can't find the time to handle all the pieces," said Gerald Koocher, dean of the Simmons School of Health Sciences and former chief of psychology at Children's Hospital. "Sadly, our current medical system often means the coordination of these children's care is left to parents who are tired, confused, and anxious. Throughout the nation there are children who have medically complex, often life-long illnesses such as muscular dystrophy, Tay-Sachs disease, or pediatric diabetes that require a huge amount of time and attention from parents and a myriad of health care specialists.

"When we bring the parents and the professionals together to talk honestly and in depth about how to become true partners, it will enhance the quality of life for the children and their parents and help them all live a richer and fuller life."

The conference, "Positive Connections: Communication Among Medically Complex Children, Their Families, and Those Who Care for Them," will focus on how families and professionals can improve communication in what can be a very difficult and stressful time.

David Browning, director of the national Initiative for Pediatric Palliative Care (IPPC) headquartered in Newton, is the keynote speaker at 9:15 a.m. He will discuss ways that parents and professionals can "speak the same language" when coping with a child's serious illness. Conversation among families, professionals, and the audience will follow.

Workshops centered around "care points"-- those junctures in care where recognizing an unmet need, responding with a timely resource or connecting with deep understanding reflects what it means to be a healing presence, will take place throughout the day. They include team-based communication, conversations around prognosis and hope, incorporating spirituality in practice, and communicating with extended family and community.

The conference is free for parents, $85 for professionals, and $40 for students (fees increase after April 22).

To register, or for more information on the CarePoints conference or program, contact Mary Hanifin, program director, at 617-521-2522, or visit The CarePoints program exists through support provided by The Cameron and Hayden Lord Foundation.