Maintenance for Adolescents with Sickle Cell Disease
Adolescents (ages 13 to 19) represents a period of transition marked by physical, emotional, and social changes. There may be concerns for adolescents with sickle cell disease. This is the stage of development when concerns about body image, peer group acceptance, and physical attractiveness are very important. Specific physical characteristics and complications of sickle cell disease can hinder the social and emotional adjustments of the affected teenager. Such characteristics and complications as jaundiced eyes, frequent urination, delayed physical maturation and growth retardation, unpredictable pain episodes, and the other complications, noted in other areas, can make coping very difficult. Unfortunately, most teenagers with sickle cell disease may face these complications. Affected teenagers may benefit from individual or group counseling. A support group for adolescents with sickle cell disease is important because they may hide their disease from peers and teachers. Such groups help teenagers learn how peers cope with problems and concerns.
Over protection by parents, family, and friends can pose very serious problems for the adolescent; they want to be independent. The physician dealing with the adolescent must keep the parents informed and give them an opportunity to participate in medical decisions. However, Information and education should be given to the adolescent even if parent is present.
In the absence of contraindications, the adolescent should be encouraged to participate in activities including sports. The teenager need to set his or her own pace and should be able to stop and rest when tired. The medical caretaker should help to decide if the teenager should participate in competitive sports.
Sexuality in the teenager with sickle cell disease is often different from that in their more healthy peers. Some will be sexually active, and it is important to provide advice on contraception and sexually transmitted diseases. Failure to acknowledge problems of sexuality and associated risks may result in serious complications later. When appropriate, adolescents should be referred to family life clinics. Pregnancy in adolescents with sickle cell disease presents medical, psychological, and social problems. They can usually benefit from counseling and should seek the obstetrical services from a high-risk obstetrical medical staff.
At this stage of life, teenagers should give serious consideration to college, careers, and their future as adults. They should be encouraged to consider careers that are consistent with their medical condition. Referral to key community resource agencies such as departments of employment, social or youth services can offer important linkages.