Bridging a special needs gap

One of the goals of the Bridge to Independence and Training Lay Trainers projects is to help families and health care workers communicate about the child’s needs.

Families caring for a child with a serious, chronic illness have enough to worry about without trying to deal with the confusing healthcare system.

A partnership involving faculty from the University of Wisconsin-Milwaukee School of Education (SOE), the Medical College of Wisconsin (MCW) and Children’s Hospital of Wisconsin is working to make it easier for families to learn how to care for children with special needs.

The guide can be used at home or in clinics to help care for a child with special needs, but also can help families be prepared for emergencies.

“We have developed a curriculum to help caregivers learn how to provide quality, safe care for their children,” says Simone Conceição. Conceição, associate professor in the SOE’s Department of Administrative Leadership, is the UWM leader of two related projects –Bridge to Independence and Training Lay Trainers. John Gordon of the Department of Pediatrics is the principal investigator and Sarah Johaningsmeir is the Research Coordinator from MCW. Holly Colby is the partner with Children’s Hospital of Wisconsin.

Basically, what Conceição and her colleagues are doing is designing simple, straightforward educational materials to teach parents and other caregivers about their child’s condition and how to manage it. The initial materials were originally produced as part of the Bridge to Independence project for nurses and case managers who work with families and caregivers.

However, the partnership then received a two-year, $200,000 grant to expand the program, using the same curriculum materials. The resulting Training Lay Trainers project prepares parents of children with special healthcare needs to teach necessary skills to other parents of children with similar needs. “We want to train lay people to teach other caregivers,” says Conceição. The first training session was held in mid-June.

The Training Lay Trainers grant is funded through the Healthier Wisconsin Partnership Program, which MCW oversees. The funding is from endowments set up in 2004 at the state’s two medical schools with money from the conversion of the former Blue Cross & Blue Shield United of Wisconsin to a for-profit company.

The text and graphics were designed with health literacy principles in mind, and include plain language, short sentences, text boxes and bulleted lists.

In addition to UWM, MCW and Children’s Hospital of Wisconsin, the Wisconsin Department of Health Services’ Children and Youth with Special Health Care Needs (CYSHCN) Program and the Milwaukee Bureau of Child Welfare are partners in the Training Lay Trainers project.

The information that she and others developed for both projects is designed to be easy for parents and other caregivers to use, says Conceição, who specializes in adult education. “We used health literacy principles in designing the materials.”

The written text uses short sentences, active voice, plain language, pictures, examples and video/audio resources. There are plenty of graphics, lots of white space, text boxes, bulleted lists and other design elements to make the material easy to read. The approach blends patient stories, information on the child’s health condition, action steps for caregivers and resources and forms.

“The idea is to make it easier for families and medical people to communicate about the child’s needs. The materials developed for use by nurses and case managers can be used in the hospital, at home or in clinics. It can be used in person, during phone conversations, through email and over the Web. “We want to help them become more self-sufficient,” says Conceição. An eventual goal is to translate the materials into Spanish.