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Focus on Pediatrics: Prepare parents and child before ostomy surgery
STOMA acronym helps to reinforce steps
Teaching parents and children about ostomy care takes more than straightforward instruction because this form of surgery is an emotional issue, says Marie Oren, RN, BSN, CWOCN, a wound, ostomy, continence nurse at Children’s Healthcare of Atlanta.
During surgery, a physician makes an artificial opening in the body to allow the release of urine from the bladder or feces from the bowel. Parents no longer have a "normal" child, and the parents, as well as the child, must adjust to a different way of managing the bowel or bladder function, says Oren. For adolescents, the surgery often is a self-esteem issue.
To help prepare families for the change, education must begin before surgery. Oren discusses the ostomy with parents to make sure that they understand what it is. She also addresses their concerns and fears. If children are at least 4 years old, she teaches them as well usually using a lifelike doll that has an ostomy. In this way, families see what an ostomy looks like prior to surgery.
"It is important for them to know what it looks like because an ostomy is very physically altering. It is your intestine on the outside of your body, and it is something we don’t normally see. It is important for parents and kids to be familiar with it so they aren’t in shock after the surgery," says Oren.
The purpose of the ostomy also is discussed. When this surgery is performed on children, often it is temporary and not something they will have for the rest of their lives. The reason for the ostomy might be trauma, frequently from a seatbelt injury. Other reasons for ostomies include Crohn’s disease, a long-term swelling bowel disease; ulcerative colitis, a chronic inflammatory disease of the large intestine and rectum; Hirschsprung’s disease, the absence of nerves in the muscle wall of the colon resulting in poor squeezing motion to eliminate feces; inborn defects of the anus; and general health issues related to premature babies.
Following surgery, Oren meets with parents to explain the tubes and drains their child has because they are vital to recovery. They often help with bodily functions until the ostomy is working correctly, says Oren.
The discussion about the drains usually takes place the day after surgery. At that time, parents are given a booklet on ostomies. The booklet discusses Oren’s role; explains the digestive and elimination system; shows photos of different ostomies and the pouch that covers the stoma, which is the cut in the wall of the abdomen; ostomy care; and information on how a child can adapt physically participating in such normal activities as school, swimming, and other sports.
"I give them a book up front so that they can learn how to take care of their child before they actually have to do it. By involving them, they feel useful. They don’t feel so helpless," Oren explains.
On the third day following surgery, parents watch Oren change a pouch, either on their child if he or she is well enough or on the doll. Immediately following the demonstration, parents watch a video about changing the pouch, which helps to reinforce the teaching. It also shows them a variety of techniques from which they might choose.
The word stoma turned into an acronym and used to teach parents the steps for changing the pouch. The letters are a reminder to:
• S — set up the supplies;
• T — take off the pouch;
• O — observe the skin;
• M — measure the new pouch;
• A — apply the new pouch.
The pouch has to be cut so that it is the same size as the stoma. In that way, it will fit around the stoma and stick to the skin, says Oren. The pouches are made with a sticky barrier to keep the skin from coming into contact with the stool or urine.
In addition to instruction on changing the pouch, parents learn about the disposal of the stool or urine, which needs to be done when the bag is a third to a half full. Older children can sit on the toilet to empty the bag.
Oren teaches children ages 10 and older how to empty and change the pouch. Once home, parents can teach smaller children. It is similar to potty training, says Oren. "A child should be able to empty the bag and do a basic emergency pouch change, meaning cutting the hole and putting the pouch on, by the time he or she is in school."
Prior to discharge, the parents do a pouch change on their child or on the doll so they have hands-on experience. If the child feels up to it, he or she also will do a pouch change.
Oren instructs parents to set up a routine for changing the pouch. Older children need to change the pouch every five to seven days or when it is leaking, and younger children need a pouch change more often depending on their level of activity.
The various methods of instruction Oren uses when teaching ostomy care seem to work well. "I like to incorporate reading a book, watching a video and hands-on [teaching] because they use all the senses and people learn differently," she says.