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You may have met a social worker when your child was diagnosed. Most children’s cancer centers have social workers who help families figure out what the hospital routine will be like, deal with insurance and financial concerns, and are available for support of the parents and, sometimes also, the child or siblings. The social worker usually works as a team with other mental health professionals and with the doctors and nurses caring for your child. You can ask the social worker any questions about how you or your child are feeling and about what services are available for support through the cancer experience.
If this is your first experience working with a social worker, and you feel a little embarrassed, remember: Social workers in hospitals have had a great deal of experience with others who have been where you are, and they can offer good advice and direction. This is one of the places where it is good to recognize that you are being asked to handle much more than a typical parent, and it is helpful to get all the support you can so you can offer your child all the support he or she needs.
In some hospitals, there are psychologists who work with patients and/or parents on the children’s cancer floor. You may be asked to meet with a psychologist or to allow your child to meet one. The psychologist may be available to follow your child or you through the cancer experience, or they may be there to do an initial evaluation of your child. They may not routinely see all families. If you are concerned about how your child is doing, you may want to ask if the psychologist could see your child to evaluate them. This may be useful since psychologists who work in hospitals understand the ways in which children’s behavior typically changes when they are sick or in pain. Psychologists have a variety of ways of working with families. Some use, among other things, interventions developed for families of children with cancer that have been shown to be helpful and effective in reducing stress.
If your child had a psychologist who knows them from before the hospitalization, it may be useful to talk with the hospital psychologist about how they might work together to help your child deal with his or her fears and concerns about being ill.
In some centers, it is psychiatrists who see patients or parents on the cancer floor. Psychiatrists are physicians whose specialty is working on people’s emotional problems. They can also prescribe medication. Talking with a psychiatrist doesn’t mean you will have medications prescribed. The psychiatrist may or may not recommend medication for you or your child, and you can discuss your thoughts, feelings and questions about medication with the psychiatrist.
Many hospitals and clinics offer groups for parents to talk with other parents about the stresses and strains related to their child’s treatment for cancer. Even if you are not typically a “group person,” it might be worth attending at least one meeting to see if talking with other parents – or even just listening to them talk – is helpful. You may think differently about groups at this time as this is an unusual circumstance. If you have not been told about a group for parents, ask the social worker. Sometimes, if there is not a formal group, you can arrange an informal group in the playroom, or the cafeteria.
Some parents are fearful of involving mental health staff because they fear that it will be costly. Typically, this is not a problem. How the mental health services are covered varies from hospital to hospital and you can find out about this from the mental health professionals themselves or from your child’s social worker. Sometimes the cost is built into the day costs in the hospital or clinic. Sometimes it is billed to and covered by your insurance. Recent improvements to Federal laws about insurance coverage for mental health say mental health services should be covered in parity with physical health services, so check with your insurance company if you have questions about your coverage. If you are concerned about costs, talk to your social worker and to help you figure out how to get you and your family the emotional care you need during this difficult time.
Parents often feel that the only people who can truly understand their feelings are parents of other children who have faced similar circumstances. It can be very helpful to talk to parents of other children, especially parents whose child has a similar diagnosis and is the same age as your own child. The hospital social worker may be able to put you in touch with such parents who are willing to share their own experiences.
If you have a religious affiliation or belief system, you may find it helpful to talk to your priest, minister, rabbi, imam, or other religious leader. If you are far from your home community, the hospital can put you in touch with a local spiritual leader of your faith who can support you. There also may be a chapel in or near the hospital that offers a place to pray and find peace. Most hospitals have a chaplain on duty. The chaplain is typically not affiliated with any particular religion and is available to visit families in the hospital. If you would rather not have any person of faith visit your child’s room, tell the nurses your preference.
Doctors and nurses can, of course, help you to understand your child’s disease and treatments and their current health status – how they are doing today. They can also help answer questions you may have about how children with your child’s disease function when they grow up. You can, if you wish, also ask your doctor or nurse questions about who can help you with the emotions your child is showing or that you are feeling. They can help direct you and tell you what parts of what you are observing in your child are typical for the medications they are on or for their phase of treatment.