Pre-Surgery Education for Children and Families at the Center for Limb Differences
Studies as far back as 1934 document the negative effects of illness and hospitalization on children. According to a study done in 1966 with 387 children, these effects include regression, separation anxiety, sleep anxiety, eating disturbances and serious aggression. Since 1966 great strides have been made in care for children facing surgery or hospitalization. These include family members being included in the education process prior to surgery or hospitalization, family members being allowed to stay overnight for inpatient stays, child life specialists involved with children's care, better preparation for children prior to hospitalization, and a large number of surgical procedures for children being done on an outpatient basis.
These changes have had many positive effects, but there is still much work to be done. The unfamiliarity with the hospital setting, the scary medical equipment, the painful procedures, the child's lack of control over the situation, the limited time for preparation prior to surgery, as well as the limited time for both the child and the family to become accustomed to the hospital setting and its regimen remain problems causing negative effects for both the child and the child's family.
Current estimates are that over 70% of surgical procedures are being done on an outpatient basis. This is a positive change, but also presents some challenges of its own, which include limited time at the hospital for pre-procedure education and for acclimatization to the hospital milieu. Also because of rapid discharge following the surgery, the family is responsible for care which was previously done by hospital personnel. Because of these factors, education for children and families prior to surgery is imperative.
This education needs to be a team effort involving the doctor, nurse, occupational and physical therapists, and social worker, if available. This effort needs to be coordinated so that all aspects of the process are covered including specific procedure details and reason for the surgery along with benefits and risks; usually done by the doctor. Information regarding anesthesia, pain and pain control, possible developmental changes following surgery, expected healing process, and various therapies needed post-surgery, as well as specifics about admission procedures, how to get to the facility, and housing possibilities, if needed, are also very important.
Other considerations such as post-surgery equipment needs, changes to home environment, clothing adaptations needed post-surgery, and education specific to certain procedures also needs to be addressed. Readiness for surgery, fears, anxieties, and pain tolerance should usually be addressed by the social worker.
All this information needs to be geared to the child's level of understanding, or the parents (if this is younger child) need to be given resources so they are able to give their child the correct information at the appropriate time. The information needs to be given in an open and honest way. Questions must be en- couraged and the family and child (if old enough) must be able to verbalize their understanding of the information that has been given.
Written materials need to be given to reinforce the teaching done and phone numbers need to be given so that the clinic staff is available for questions that may come up. It is also helpful for the family to have the clinic nurse call a week or so before the surgery to answer any questions, to make sure necessary arrangements are in place, and to go over the admission procedure with the family.
Why is this important?
For the child (patient) it decreases anxiety and increases the child's sense of safety while at the hospital. With decreased anxiety there is decreased tension, which results in promotion of healing, and can also lead to decreased reaction to pain. It can also lessen the amount of regression and sleep disturbance that most often comes following discharge. It may also help with anesthesia induction.
For the family it also decreases anxiety and may help the parent to dispassionately be able to explain to the child about the upcoming surgery. Surgical education can promote confidence in the doctor and the hospital and may help the parent/family member present at the time of the surgery to be a better advocate for the child. Additionally it may help the family following discharge to distinguish between normal post-surgical recovery and complications. It can be helpful if another surgery is necessary in the future and it provides resources for the family and the child to answer their questions.
General Rules and Assumptions for Any Pre-Surgery Discussion
- A child should never be threatened with hospitalization, an injection, or a visit to the doctor because he/she did something wrong.
- Regression to earlier stages of behavior is very common following hospitalization.
- Children will exhibit mistrust and insecurity if their questions regarding hospitalization and surgery are not answered.
- Anesthesia must be talked about as "a special kind of sleep," not as "being put to sleep" (like the family dog). This "special kind of sleep" needs to be explained further in terms of the special medicine given by a doctor so the child won't wake up until the doctor stops giving the medicine after the surgery is finished. The child needs to know he/ she won't wake up, like sometimes happens at night, until the surgery is finished.
- The child needs to know that nurses and doctors are their friends who are there to help the child get better, even if they have to do something that might hurt or make the child uncomfortable. This is done to help the child get better.
- For younger children, prior to the hospital admission for an outpatient procedure, making preparations with the child for their return home after the procedure, can sometimes be helpful. Setting out pajamas or comfortable clothes for the child to put on when he/she comes home can be reassuring for some children to let them know that the plan is for them to come home once the surgery is over.
- Letting the child express his/her feelings and ask the questions they have about the surgery must be allowed; as well as giving reassurance about the validity of the child's concerns.
The information given must be based on the child's developmental level, which may or may not coincide with their actual age.
Infants and Toddlers (ages birth-3 years old)
- These children are not equipped to handle anxiety, so they are totally dependent on their parents/family to advocate for them while they are at the hospital.
- Information given must be geared to the parent's/family's needs, as the child is too small to understand.
- Parents/family members are particularly anxious and often have no previous experience with surgery or hospitalization. Explanations need to be complete and open-ended so the family feels comfortable asking questions.
- Taking familiar objects/toys that will comfort the child e.g. a stuffed animal or special blanket is very helpful and makes the hospital more like home.
- If this is going to be an outpatient surgery, suggest to the family that if possible, 2 adults should be present at the time of discharge. Both adults can listen to and remember the discharge instructions and one adult can drive home while the other attends to the child.
Pre-School Children (ages 3-6 years)
- These children are very curious and fantasize about things during their play. They fear the unfamiliar.
- The child may think that hospitalization and surgery is a punishment for some wrong-doing. Reassurance and explanation is needed so they know it is not their fault.
- Realistic medical equipment used on a doll or teddy bear can give them an idea of some of the things to expect. If this is not available, pictures of this equipment with explanations about how it is used can be substituted.
- Having children draw pictures of what they expect or having them role play their expectations can ease fears and allows the family to correct misperceptions.
- They only need to be told about 3-4 days prior to admission. Storybooks or color books can aid in the process. These children a little time to think about what is going to happen and to ask questions about it.
- Simple short explanations are best, using the same words each time. Be honest and matterof- fact and don't go into detail.
- Take along comforting toys, pictures, or other objects.
- A parent or other adult needs to be with them at all the times, when it is possible.
- Children 4 years old and older may receive great benefit from a hospital tour about a week prior to the scheduled surgery. This shows them what the hospital environment is like and helps them to know better what to expect.
School-Age Children (about 6-12 years)
- These children are especially afraid of painful procedures and of losing control, so explanations about pain need to be very clear. The child needs to be given ways such as distraction or deep breathing to help handle the pain. Emphasis needs to be on the short term nature of the pain and they need to be allowed to cry without being made fun of.
- Always be open to their questions and let them know their fears are understandable.
- The older the child, the more detailed the explanations need to be, but it is very important to choose the words for these explanations carefully. Telling the child not to be scared or not to worry frequently makes the anxiety worse.
- Sometimes these children fear that what is done to one body part may affect the function of other parts. Be specific about what to expect following the surgery; give the exact area that will be affected and talk about the expected function of that part following surgery.
Adolescents (ages 13 years to adulthood)
- There is a great difference in maturity levels in this age group, so level of understanding and sophistication must be assessed prior to giving information.
- Privacy is a very important issue, so it is important to address this in any pre-surgical teaching.
- Body image is also of vital importance, so this person needs to be told honestly how the surgery will affect their body functionally and cosmetically.
- Always address this patient directly with the necessary information and treat them with respect.
- This patient also fears loss of control, pain, and the unknown. Clear and honest explanations of what to expect are very important.
Having the right materials on hand to aid in the pre-surgery education process is very important. Resources may be published by various organizations or publishers in written form; they can be found on the Internet; they can be videos or DVD's; and they can be something that is prepared internally for your clinic setting. All of these different venues can be very effective, but they should only be used to reinforce the verbal education that you give them.
There are also toys such as the Playmobile® operating room set or the Playmobile® hospital room that are quite inexpensive, but can be especially helpful for children who aren't going to be able to have a hospital tour. These sets are quite realistic and come complete with masks, gowns, IV bottles, and much more, so they give a child some idea of what to expect. Also realistic toy medical equipment that the child can play with is very helpful for dispelling some fears. Fisher- Price® makes the best toy medical kit that I have found. Having a surgical mask for the child to see can also make the experience less traumatic.
I have also prepared written materials on topics pertaining to my specific setting that the families find useful. The topics include such things as the admission procedure, presurgery requirements of our doctors and the hospital, pertinent names and phone numbers, how to set up a hospital tour, and information regarding housing opportunities, should they be necessary.
At the end of this article, I have also listed some resources that I have found very useful in my setting. Check those out to see if they could be helpful for your patients and their families. Just a note, this is not an exhaustive list; I'm sure many of you have other wonderful resources that your use. I would love to get email from anyone with more suggestions. Thank you!
Resources for Children -most of these will need to be read to the child by a parent/family member with explanations along the way.
- A Visit to the Sesame Street Hospital, Deborah Hautzig, Random House, Children's Television Workshop, 1985. (for ages 3-6 years)
- Having an Operation, Arthur Greenwald and Barry Head, Family Communications, Inc. 1977. (for ages 3-8 years)
- Going to the Hospital (First Experiences), Fred Rogers, Jim Judkis, Putnam Publishing Group, reprint edition, 1977. (ages 3- 8 years)
- Franklin Goes to the Hospital, Sharon Jennings, Brenda Clark, Paulette Bourgeois, Shelley Southern, Scholastic Press, 2000. (ages 4-8 years)
- Let's Talk About Going to the Hospital (The Let's Talk Library), Marianne Johnston, Power Kids Press, 1998. (for ages 9-12 years, younger if read by a family member)
- Curious George Goes to the Hospital, H. A. Rey, Houghton Mifflin, 1966. (a classic- for children 4-8 years)
- Krames Health Education and Safety pamphlets, The Stay Well Co.
- My Surgery Coloring Book (outpatient surgery information for ages 4-6 years).
- My Surgery Activity Book (outpatient surgery information for ages 6-11 years)
Resources for Children to Use in Explaining Surgical and Other Procedures
- An Illustrated Adventure in Human Anatomy: Blueprints for Health, Kate Sweeney, Anatomical Chart Company, Lippincott Williams & Wilkins, 2nd edition, 2002.
- Jessica's X-rays: Includes Actual X-rays! Pat Zonta, Clive Dobson, Firefly Books Ltd. 2002.
- Slim Good Body Presents The Before Tour: An Operation Preparation video (VHS), Slim good Body Corporation, can be purchased at www.slimgoodbody.com
Teaching Materials for Families -these will be helpful for the parent/family in understanding the entire process, in being able to give explanations to the child who is having the surgery, and in distinguishing the normal reactions to surgery vs. the abnormal.
- Anesthesia and Your child-pamphlet from the American Academy of Pediatrics, 2001.
- Materials distributed by Maxishare (www. maxishare.com)-these materials are written by personnel from Children's Hospital of Wisconsin and are for use in most surgical facilities
- So Your Child is Going to Have Surgery, 1996, reviewed and reapproved 1998, 2000.
- Changes in Behavior-When Your Child Returns Home From the Hospital, 1997.
- Play and Your Immobilized Child, 1994.
- So You Are Going Home in a Cast, 1990, reviewed and revised, 1993 and 1996.
Websites that Can Be Helpful For Adults and Children to Use With Pre-surgery Explanations
- www.rollercoaster.ie/hospital/ preparing_your_child.asp -site for family telling how and when to tell a child about upcoming surgery (some of the information is specific to that hospital only)
- www.ynhh.org/pediatrics/ hospitalization/ preparing_your_child.html site for parents to use in preparing their child for hospitalization and surgery
- www.devoschildrenshospital.org/ -site has information in English and some topics in Spanish. There is information for kids, teens, and parents, depending on the headings clicked on. For specific presurgery information under the Kids section click on People Places, and Things; under the Teens section click on Q & A; under the parents' section scroll down and click on The Child Having Surgery.