By Deborah Miller, MSN, RN, CNN The adolescent period is often a difficult time for families, and when you have a child with a chronic illness, the difficulties are compounded. The adolescent with chronic kidney disease or the “renal teen” is no exception. A major challenge for this age group is the need to progress from dependence on family to dependence on self. This is often in direct conflict with the parent’s need to protect the ill child. In most families, the parents have had the responsibility for ensuring proper care including making appointments, getting the prescriptions and being the “historian” at the doctor’s office. These parental roles are long established, and as the child starts to make the transition into adolescence, an increase in family conflict may occur. In order to understand some of the factors at work, let us divide adolescence into three stages; each stage includes distinct developmental processes. Once the processes are identified, let us look at how illness exerts its influence, and then at some approaches families can use with their child. Keep in mind that these generalities and children are not usually this predictable. The early adolescent (age range 11-14) is in the midst of puberty. The child is preoccupied with self, particularly the questions of “am I normal” and “what can I expect.” The parents still exert a great influence on this age group. The child moves from elementary school to middle school at this time, and with this tremendous change comes a greatly expanded peer group. While there are more choices for friends, there are also more chances for rejection. Young renal teens are exquisitely aware of the biologic changes occurring during puberty and sensitive to their particular timing and rate in relation to their peers. Many adolescents need a great deal of reassurance at this time. Mid-adolescence is more complex. This child is the 14-16 age range and is very concerned with independence as well as self image. This is often when risk-taking behavior is seen, as the child is concerned with “who am I” and “do I have power.” Acceptance is important to the mid-adolescence and peers exert a great influence. With the transition into high school, the teen has an even larger pool of peers from which to choose. Middle adolescents spend much less time with their families than early adolescents, and when not with their peers, they are often alone in their rooms. The tendency to stay away from the family is consistent with trying to establish a separate identity. The late adolescent (17 and older) is more future oriented. This age group is increasingly concerned with issues of intimacy and career. The questions asked are “am I smart enough,” “am I attractive enough” and “what can I do.” The need to establish more intimate relationships drives social interaction and there is a greater influence exerted by “partners.” This change in thinking may decrease the number of friends, but may increase the intensity of friendships. The older adolescent is searching for direction, and feels pressure to make “life decisions.” The search for identity intensifies during the senior year of high school with graduation creating a deadline for decision making. These are simple role definitions and there is a great deal of overlap between stages. But how does chronic illness come into play? The most obvious influences are growth and development. Renal teens may start puberty and its associated growth spurt much later than their peers which can contribute to their anxiety. It is hard to think of yourself as “normal” when your peers are so much bigger and better developed. Does your child have scars? If a child showers after gym class, the scars cannot be hidden. This is a time when the world revolves around self so the adolescent is convince that everyone is always looking at him or her. And all those medications? No “normal” kids take all those pills! What is the adolescent’s favorite food? Big Macs, pizza, tacos, fried chicken, french fries – everyone else eats them, why can’t the renal teen? And football – I have had children on peritoneal dialysis tell me that if they can’t play football, their life is over (this is a very dramatic stage of life). Then there is the mortality issue. The average teenage feels immortal, which is in direct conflict with the renal teen’s chronic illness. Is your child worried about dying? Does this worry translate into noncompliance with medications and diet to prove they are normal? Is there risk-taking behavior involving sexual activity or substance abuse in an effort to be like everyone else? Here are some suggested approaches: First, always tell your child the truth. Don’t “protect” your child by speaking privately with the doctor as this may foster a spirit of distrust. Encourage your child to become involved in his care by asking questions of the medical team. This is a good time to slip out and let the physical exam be done in private so that “embarrassing” questions can be asked and reassurance given. The renal teen needs to be treated as normally as possible. “Normally” means chores at home, expectations of daily school attendance and academic performance to the level of his or her ability. Allow your child to experience the satisfaction that comes from hard work and work well done. Adolescents on dialysis are perfectly capable of doing dishes and cleaning their room. Mastery of tasks increases self esteem and everyone want to feel competent. If you never learn anything useful, how can you take care of yourself?” Always emphasize the positive, concentrate on what the child can do, not what he or she can’t do. Encourage exercise, swimming, baseball, soccer, bike riding, tennis, etc. There are very few restricted activities, but check into summer camp. Although regular summer camp is often desirable, there are special camps across the country for children and adolescents with renal disease. In this environment your child will be “normal” and may find that he or she is healthier or stronger than the average renal kid. There are often junior counselor opportunities for the renal teen who feels too old for camp. Your social worker can help you find an appropriate camp and scholarships are often available. Physical activity helps keep bones and hearts healthy and you don’t have to be tall to play baseball or soccer. Lastly, don’t forget to tell your child how much he or she means to you. Acknowledge the difficulty you are having with letting go. Let the child know about your concerns and ask for his or her input. Finally, counseling should not be a last resort, it should be a first response. Your facility has many services available to you; use them early and often. With a lot of hard work, flexibility, and a good sense of humor you can successfully master the challenges of raising a responsible young adult. Deborah Miller, MSN, RN, CNN is a clinical nurse specialist in pediatric nephrology at Fairfax Hospital in Fall Church, Va. She is Chairman of the Pediatric Special Interest Group of the American Nephrology Nurses Association. This article originally appeared in the Special Edition 1997-98 issue of aakpRENALIFE, Vol. 13, No. 2. |