Social Science Series #6: Psychological Effects of Leukemia in Children
Leukemia is the most common cancer in children and teens, accounting for almost 1 out of 3 cancers. Most childhood leukemias are acute lymphocytic leukemia (ALL), while the remaining cases account for acute myeloid leukemia (AML). Chronic leukemias are rare.
The diagnosis of leukemia is a critical life event that can alter a child´s life. Having to deal with different treatments and constant hospital visits at an early age, can be very difficult to manage. Such a diagnosis can impact children not only physically but mentally and emotionally. It affects a child’s social relationships as well. Young patients may have difficulties in handling different emotions such as anxiety, anger and managing stress. Sometimes they and their families have problems expressing how they feel to their loved ones, leading to complications in relationships.
(Sources: American Cancer Society and Cancer.net)
Social and emotional issues during and after treatment
Some children may have emotional or psychological issues that need to be addressed during and after treatment. Factors such as a child’s age when diagnosed and the extent of treatment can play a role here. Depending on their age, they may also have some problems with normal functioning and school work. These types of issues can often be helped with support and encouragement. Doctors and other members of a healthcare team can also often recommend special support programs and services to help children after treatment.
Many experts recommend that school-aged patients attend school as much as possible. This can help them maintain a sense of daily routine and keep their friends informed about what is happening.
Friends can be a great source of support, but patients and parents should know that some people have misunderstandings and fears about cancer. Some cancer centers have school re-entry programs that can help in these situations. In these programs, health educators visit the school and tell students about the diagnosis, treatment, and changes that the cancer patient may experience. They also answer any questions from teachers and classmates.
Parents and other family members can also be affected, both emotionally and in other ways. Some common family concerns during treatment include financial stress, travelling to and/or staying near the cancer center, the need to take time off from work and the need for home schooling. Social workers and other professionals at cancer centers can help families sort through these issues.
Centers that treat many patients with leukemia may have programs to introduce new patients and their families to others who have finished their treatment. This can give them an idea of what to expect during and after treatment, which can be very important.
Once treatment is finished, a number of emotional concerns may arise. Some of these might last a long time and can include:
- Dealing with physical changes that can result from the treatment
- Worries about the disease returning or new health problems developing
- Feelings of resentment for having had leukemia or having to go through treatment when others do not
- Concerns about being treated differently or discriminated against (by friends, classmates, coworkers, employers, etc.)
- Concerns about dating, marrying and having a family later in life
Cognitive (Thinking) Effects
Learning difficulties may begin either during treatment or may become evident months or even years after treatment. Mathematics, spatial relationships, problem solving, attention span, reading and spelling, processing of information, planning and organizing and concentration skills are all areas of learning that may be affected. Problems with fine motor coordination, which might cause poor handwriting, can also develop.
Childhood leukemia and lymphoma patients may receive therapy that affects the central nervous system (CNS). The CNS includes the brain and spinal cord. Therapies that affect the CNS can increase the risk for genitive effects, including educational issues. Examples of these therapies include:
- Methotrexate or cytarabine—if given in high doses intravenously (IV) or injected into the spinal fluid (intrathecal [IT])
- Total body irradiation (TBI), prior to a stem cell transplantation
Receiving cancer treatment at a younger age also increases the risk. Significant cognitive effects are more often associated with treatment plans that include radiation to the brain or brain surgery, neither of which are routinely used to treat childhood leukemia or lymphoma.
(Source: Leukemia and Lymphoma Society)
Psychological Care for Children with Leukemia Survivors
- Neuropsychological Testing. Neuropsychological Testing. Any child who is at risk for cognitive effects or is having difficulty in school should have neuropsychological testing done by a licensed pediatric psychologist or neuropsychologist to check for possible learning challenges. A referral from the child’s health care team is required. Also, insurance coverage needs to be determined for neuropsychological testing as it can be expensive. When testing is complete, the neuropsychologist will explain the results and make recommendations for adjustments or accommodations that may help the child in school. If necessary, the neuropsychologist can explain the necessary recommendations to the school staff. These recommendations will also be used to help determine if the child needs a formal education plan, such as an Individualized Education Plan (IEP) or 504 Plan.
- School Psychological Assessment. If neuropsychological testing is not an option, a school-based assessment may help to determine the child’s educational needs or may be required by the school. These assessments are usually performed to determine if the child is eligible for special education programs. Generally, school-based assessments are less effective at linking cancer treatment with learning or behavior problems. Ask the child’s school administrators for more information.
In caring for a child with leukemia, it is important to keep a record of physical and emotional symptoms that the child experiences and discuss them with the child’s treatment team.
Additionally, caregivers should help the child develop and maintain a healthy lifestyle after treatment ends, through appropriate exercise, sun protection, good nutrition and not smoking. Enlist the help of health professionals as needed.
(Source: Leukemia and Lymphoma Society)