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Parenting children with health issues
What to do when your child has a chronic illness

by Health Library

Parents of children afflicted with a chronic illness face daily challenges. While they often feel desperate and alone, there are, in fact, thousands of parents coping with the same issues every day.

An estimated 10 to 15 percent of children in the United States face medical conditions that don't go away, such as diabetes, asthma, epilepsy and cystic fibrosis. Their parents must learn to cope with special diets, medication, schooling challenges, repeated hospitalizations, behavioral issues and more.

Parents of chronically ill children, just like all parents, want to give their children the opportunity to live the fullest life possible. While children's health issues add extra challenges that impact the entire family, parents with knowledge and perspective can help their children live a complete life despite chronic illness. At the Stanford Health Library, there are a number of excellent books and other resources to help them along way.

"Parenting children with health issues" (Love and Logic Institute, 2007) is a new book co-written by child psychiatrist Foster W. Cline, M.D. along with Bay Area resident and parent of two children with cystic fibrosis, Lisa C. Greene. "Parenting children with health issues" applies the precepts of the popular Love and Logic child-rearing program to the special challenges faced by families with chronically ill children.

The main thrust of the program is to help children learn to identify themselves as having a disease, not being one. Children are encouraged to learn self-control, have a positive self-image and learn to deal with life's frustrations with a positive attitude. This highly-readable book is really a how-to book for parents looking to support the emotional development of their ill children. There are tips and tactics for effective parenting for children of all ages, from birth through adolescence.

Beyond emotional issues, parents of chronically ill children must also contend with important physical needs, such as diet. "Children with special health care needs: nutrition care handbook" (2004), from the American Dietetic Association, discusses the nutritional needs of children who may have health issues that affect their growth, feeding and eating behaviors, bowel and fluid management.

This book was written for healthcare professionals who care for these children. It is not a "how-to" book for parents, but it is full of useful information that may help parents better understand and implement the dietary recommendations of their own children's healthcare providers. This book is full of graphs, charts and clinical tips that highlight the science behind their children's nutritional prescriptions.

Many children with chronic medical conditions must also contend with hospitalization. "Your child in the hospital: a practical guide for parents" by Nancy Keene and Rachel Prentice (O'Reilly, 1999) is a great book to help parents prepare their children for a hospital stay. This book is full of good tips to help parents advocate for their children once in the hospital, too.

Going to the hospital can be scary for kids and parents alike. "Your child in the hospital" addresses issues faced in emergency-room visits, short-term and lengthy hospital stays. The way hospitals work, from understanding staff roles to billing and medical records are discussed. Specific suggestions are included for families with children with long-term health issues. There are journal pages for hospitalized children to chronicle their experience, suggested packing list and pages of further resources, including age-appropriate books for kids.

For those with Internet access, Lucile Packard Children's Hospital at Stanford has created a fun and informative Web site for children headed to the hospital (www.lpch.org/kids/english/index.html). Packard's Kid's Connection contains links to "Getting Ready," "Getting Treated" and "Getting Around." There are lots of interactive games that are fun for kids. This is a terrific Web site that makes the hospital seem like a friendly place that will help them more than it will hurt.

The Stanford Health Library offers many more resources for parents raising children with chronic illness. You can start at healthlibrary.stanford.edu to find information on both general and specific children's health issues. You can also visit the library, make a telephone call or send an e-mail to receive research assistance and information packets prepared free of charge. Branches are located at the Stanford Shopping Center near Bloomingdales'; on the third floor of Stanford Hospital or on the main level of Stanford's new Cancer Center. Call 650-725-8400, visit healthlibrary.stanford.edu or send an e-mail to healthlibrary@stanfordmed.org.