» Carepoints Conference for Parents of Children with Medically Complex Illnesses

Friday, May 2, 2003

The first annual CarePoints conference provided a forum for parents to give feedback to caregivers, to address how families' needs are ignored or met and to explore how families' lives can be improved.

The conference, which was held today at the Holiday Inn in Brookline, was free for parents and offered at low cost for professionals, in keeping with the purpose of the program. The unique new CarePoints program, housed at the Simmons College School of Health Sciences and coordinated jointly with Wheelock College, is an attempt to promote parent-professional partnerships to enhance the quality of life for children with complex, sometimes life-threatening conditions.

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

"We know that 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," said Koocher.

The conference wshowed parents how to develop leadership, networking, resources, and advocacy roles necessary to care for their children. The conference featured dialogues throughout the day between parents of complexly ill children and professionals, with a number of 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.

The workshops included setting realistic goals after a child's diagnosis, best ways for professionals to deliver a diagnosis to parents, palliative care planning to help children with life-threatening conditions, successful communication about prognosis between families and caregivers, resources for parents to set up an effective home care plan, and parent-professional partnerships for end-of-life care.

For more information on the CarePoints conference or program or to register for the 2004 conference, contact the Simmons College School of Health Sciences at 617-521-2908, or visit http://www.carepoints.org/. The Cameron and Hayden Lord Foundation and the Joseph P. Kennedy, Jr. Foundation support the CarePoints program.

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