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Don’t bombard with information
When addressing the educational needs of parents with sick children, health care professionals frequently assume they know what is appropriate, yet often they miss the mark.
That’s why it’s important to get input from the population you serve, says Kim Meighan, RN, health information manager at The Hospital for Sick Children in Toronto. You might decide to produce a pamphlet, but the parents may need a video or audiotape instead, she explains.
At St. Jude Children’s Research Hospital in Memphis, TN, parents help shape patient education because they have a unique perspective on the needs of family and children undergoing cancer treatment, says Samuel L. Maceri, RN, MPA, CNA, director of education and support of patient care services. "We are the content experts and they are the experience experts," he explains.
Parents can provide information on what needs to be communicated, when it needs to be communicated, how it needs to be communicated, and how much or how little information needs to be included. For example, parents have told the health care providers at St. Jude that when their child is first diagnosed with cancer, they don’t want to be bombarded with information. Instead, they need time to get used to the diagnosis.
"Later, they go through a phase where they are hungry for information, and whatever manuals and books we can provide is hardly enough. We have to gear our educational efforts to their phases," says Maceri.
To help parents get information when they need it, St. Jude put into place a video-on-demand system, and they are producing educational videos for it. Also, they moved their cabinets of patient education materials out in the hallway and put a sign on it that instructs parents to take whatever information they wanted. "Nurses will continue to give parents information, but they can come by and rifle through the cabinet whenever they want to at their will, and the video on demand is the same idea," says Maceri.
In an effort to ensure that the distributed materials are parent-focused, The Hospital for Sick Children often does focus testing with parents when developing materials. For example, they currently are in the process of assessing what types of materials families who have children with brain tumors might need. To capture the information needs parents have at each stage of illness, they are interviewing three groups of parents. Those groups are parents who have a child who was just diagnosed with the brain tumor, those parents who have had the diagnosis from three months to a year, and parents whose child has been diagnosed for longer than a year.
While input on educational materials is valuable, parents can be used to improve education in many ways. At St. Jude, a panel of parents and cancer survivors spend time talking with the nursing staff about the experience of being a patient. The panel is part of an intensive pediatric oncology course all new nurses must participate in.
Parents sit on many committees at The Hospital for Sick Children, such as the pain management committee. "Parents are able to offer input in terms of the types of direction we should take in programming or educational materials," says Meighan.
Although a parent does not currently sit on the interdisciplinary patient education committee at St. Jude, it’s been discussed, and a parent will soon be selected. A parent already has been selected to sit on the planning committee for the new family resource center. When the hospital remodeled its outpatient area, parents and children were asked for input in order to make the area as user-friendly and child-sensitive as possible.
Many of the article ideas and tips printed in St. Jude Parents, a family newsletter, comes from parents. For example, one parent suggested a piece about how to keep children from sharing germs in waiting areas.
"We take parent’s concerns and put them in the newsletter, as well as the tips that they give us," says Maceri. Parent participation can be invaluable, he says, but the information that is used in the newsletter must carefully be evaluated, and participants on committees and other projects must be selected with care.
The information provided for the newsletter must be clinically valid and not open to misinterpretation by other parents. Also, parents selected as committee members or speakers must be representative of families in general and have a true desire to provide valid information. "We contact the parents and talk with them to make sure they have the time and are available to work with us. Our concern is that they don’t have an ax to grind or one particular point of view," says Maceri.
Nurses and physicians that have worked closely with the parents during their child’s illness recommend those who are asked to participate. "They know who is involved and who is articulate," explains Maceri. n
For more information about soliciting parent participation to improve patient education, contact:
• Samuel L. Maceri, RN, MPA, CNA, Director, Education and Support Patient Care Services, St. Jude Children’s Hospital, 332 N. Lauderdale St., Memphis, TN 38105-2794. Telephone: (901) 495-2019. Fax: (901) 495-4478. E-mail: Samuel.email@example.com.
• Kim Meighan, RN, Health Information Manager, The Hospital for Sick Children, 555 University Ave., Toronto, Ontario, Canada M5G1X8. Telephone: (416) 813-6528. E-mail: Kimberley.firstname.lastname@example.org.