Situation

A.J. is a 9-year-old female newly diagnosed with acute lymphocytic leukemia, which is the most common childhood cancer, accounting for about 30% of all childhood cancers (American Cancer Society, 2005). She has recently been admitted to an inpatient oncology floor at a children’s hospital to begin the first round of chemotherapy for her cancer. P.J. is her single mother, who is also the guardian of A.J.’s 12-year-old and 5-year-old brothers. Since this is the first time any of her children have been admitted to the hospital, P.J. is very overwhelmed and concerned for her daughter’s life, and she is also worried about how A.J.’s brothers’ lives will be changed.

Imagine that you are the parent of a family similar to this, with two or more healthy children, when suddenly one of your children is diagnosed with a chronic illness, such as cancer, diabetes, or another serious childhood disease. Some of the first things that may run through your mind may be “How will this change my child’s life?” “Will my child suffer?” or “Is my child going to die?” Another important topic that parents do not immediately consider is how to continue to effectively parent the ill child as well as his or her siblings.

In addition to administering drugs and taking care of the child while in the hospital, nurses, as well as other healthcare professionals, play a pivotal role in helping the parents learn how to continue parenting their children effectively while dealing with the newly diagnosed disease. Although families of children of all ages need support while experiencing a chronic illness, the focus of this article will be the school-age child (6 to 12 years old) who is diagnosed with a chronic illness and helping the parent(s) to continue to parent all their children, ill as well as healthy. As the nurse, understanding what the families experience is essential to providing comprehensive care (Ward-Smith, Kirk, Hetherington, & Hubble, 2005). The nurse will be responsible for helping to answer the many questions that the child and the family will have. Even though the family may not mention it, the nurse should discuss ways to successfully continue with parenting the chronically ill school-age child along with his or her siblings.

Children with a chronic illness are typically treated differently than the other children in the family who are healthy. While watching the ill child receive the extra attention required by the illness, the healthy children may feel ignored and become jealous of the attention that the ill sibling is receiving (Ward-Smith et al., 2005). Children may not understand the illness and think that it is not fair that they are not ill also, or they may be worried about their own health, since they do not want to “catch” the disease (Batte, Watson, & Arness, 2005).

Immediately after being diagnosed with a chronic illness, the school-age child may be scared, confused, or upset. All children deal with problems differently, depending on personality, age, and maturity level (KidsHealth, 2005). Younger or less mature children often view illness as something that they personally caused. Older or more mature children are more likely to understand that illness is something that can happen regardless of their actions.

By school age, children begin to understand the concepts of illness and death, and they begin to experience a wide range of emotions about illness and death, such as guilt, anger, sadness, and shame. Some children have a difficult time expressing emotions and often react by withdrawing, having poor performance in school, and being aggressive (People Living with Cancer, 2005).

Here are some suggestions for parents dealing with an ill child:

• Explain the disease to the child in an age-appropriate manner (Akron Children’s Hospital, 2005). Explain everything to a school-age child thoroughly and honestly, but use simple terms such “good” or “bad” cells in the body causing illness, and say that treatment will help the “good” cells kill the “bad” cells (National Cancer Institute, 2006).
• Keep life as normal as possible—Allow the ill child to still be a child by allowing for typical play time for the child’s age, as well as time to do schoolwork (Chivari, 2001).
• Try to keep a regular routine at home, such as dinner or bedtime rituals. The child should also attend school as regularly as possible, in order to maintain relationships with peers and keep on task with developmental milestones (KidsHealth, 2005).
• Do not bend the rules or make exceptions in discipline for the ill child; keep things consistent in disciplining for all children in the family (Chivari, 2001).
• Plan household chores for all children, even the ill child. Although the ill child may be tired some days, he or she can still do lighter household chores, such as setting the table for dinner, or cleaning up afterward. He or she could even “help” the other children in the family complete their chores, if it is easier on the ill child (Chivari, 2001).
• Avoid false hope for the ill child, such as “You’ll be OK” or “This won’t hurt” while going through a procedure, such as an IV placement or lumbar puncture (KidsHealth, 2005).
• Ask the ill child how he or she is feeling—do not assume. This can help the parent to direct conversations about the illness and treatments that might occur. For example, if the ill child is very frightened, then the parent can gear the conversation toward safety and informative details about the illness or procedures (KidsHealth, 2005).
• Allow the ill child to be responsible for his or her own care, when appropriate, to give the child control. The ill child can be given choices, such as what type of juice to take his or her medication with (Texas Children’s Hospital, 2006).
• Encourage your child to talk to you or another adult at any time about his or her feelings. The child needs to describe how he or she is feeling, whether scared, confused, or angry (Malcarne, 2002).

Parenting the siblings of a chronically ill child can often pose an even bigger challenge. Unintentionally, parents may begin to pay less attention to the siblings. This may be due to the frequent hospital trips of the ill child for care. Some things that healthcare providers can help parents with, regarding the ill child’s siblings, are as follows:

• Explain the disease to the siblings in an age-appropriate manner. Even though the children may be young, do not lie to them. Do not assume that they do or do not understand what is happening. Children need to learn about the disease and the possible lifestyle changes the family may face, no matter how young they are. The more explanation about upcoming changes, the more comfortable the children will feel (Akron Children’s Hospital, 2005).
• Know what some of the typical feelings are that siblings may experience: jealousy, anger, frustration, resentment toward the ill child, and guilt (Malcarne, 2002).
• Encourage the siblings not to ignore the disease and special needs that the ill child may have. Allow siblings to help with the ill child’s daily needs whenever possible, such as reminding the ill child to take his or her medications or helping pack things for the family to stay a night in the hospital. This allows the healthy children to feel involved in their sibling’s care, and not otherwise ignored and jealous (Akron Children’s Hospital, 2005).
• Encourage siblings to ask questions about the disease and their feelings about it. Answer the sibling’s questions honestly—do not sugarcoat anything. Realize that if the sibling is told that everything will be OK no matter what, the sibling will not be adequately prepared for a negative turn in their sibling’s illness and treatment (Akron Children’s Hospital, 2005).
• If unsure of how to start a conversation, ask the siblings how they are feeling at the moment. A parent may assume a sibling is not upset about the illness, because he or she is still playing and “seems fine,” although the child may feel very upset inside (Akron Children’s Hospital, 2005).
• Prepare your children to deal with how other peers will react to the illness—role play with them and offer suggestions on how to cope. They can even help educate uninformed children about their sibling’s disease (Akron Children’s Hospital, 2005).
• Set children up with a support group for families at a local hospital. Allowing the children to interact with other children experiencing the same situations helps them to feel that they are not alone (Akron Children’s Hospital, 2005). See Figure 1 for support groups for siblings of children with a chronic illness.
• Spend one-on-one time with all your children. It is important for the parents to spend “alone” time with each child, doing something that each child particularly enjoys. This allows each child to feel that he or she is loved enough to receive special attention from his or her parent(s).

As a healthcare professional, it is part of your job to help parents and families of newly diagnosed chronically ill children understand what types of things they might expect in the future regarding their child’s illness. Healthcare professionals should encourage parents to maintain as normal of a household as possible during this time. Although this is not one of the first things parents think about after their child is diagnosed with a chronic illness, it is very important to remind them about the challenges they may face with their ill child, as well as the ill child’s siblings. By using the information just described, the situations experienced by families may become less stressful and easier to handle.

About the Author

Address correspondence to Katrina D. Lewis at katrinad lewis@yahoo.com.

References

Akron Children’s Hospital. (2005). Tips to grow by: Dealing with your child’s chronic illness. Retrieved October 9, 2006, from http://www.akronchildrens.org

American Cancer Society. (2005). What are the types of childhood cancers? Retrieved November 17, 2006, from http://www.cancer.org

Batte, S., Watson, A., & Arness, K. (2005). The effects of chronic renal failure on siblings. Pediatric Nephrology, 21(2), 246–250.

Chivari, T. (2001). Parenting a chronically ill child. Magellan Health Services. Retrieved October 4, 2006, from http://www.magellanassist.com

KidsHealth. (2005). Caring for a seriously ill child. Retrieved October 4, 2006, from http://www.kidshealth.org

Malcarne, V. (2002). Siblings of children with chronic illness. Retrieved October 4, 2006, from http://www.jsdn.org/archmedart/siblings.htm

National Cancer Institute. (2006). Young people with cancer: A handbook for parents. Retrieved November 17, 2006, from http://www.cancer.gov/cancertopics/youngpeople/page4

People Living with Cancer. (2005). Helping a child or teenager who is grieving. Retrieved October 9, 2006, from http://www.plwc.org

Texas Children’s Hospital. (2006). Texas Children’s offers tips for dealing with chronically ill children. Retrieved October 4, 2006, from http://www.texaschildrenshospital.org/Parents/TipsArticles/ArticleDisplay.as px?aid=1087

Ward-Smith, P., Kirk, S., Hetherington, M., & Hubble, C. (2005). Having a child diagnosed with cancer: An assessment of values from the mother’s viewpoint. Journal of Pediatric Oncology Nursing, 22(6), 320–327.