Hematology and Oncology Support Services for Patients and Families
Center for Cancer and Blood Disorders Patient and Family Services
When your child is diagnosed with cancer or a chronic blood disorder, it can be emotionally overwhelming. Not only are you worried for the health of your child, but you wonder how you will be able to navigate the months or years that your child will be receiving treatment.
In addition to the questions about your child’s treatment and prognosis, there are questions about medical costs, about potential job loss if a parent has to miss work, concerns about school attendance, and how to deal with the feelings surrounding the news that a child has cancer.
The medical team at the Center for Cancer and Blood Disorders is well aware of the emotional and social impact of this situation. It is the reason we have oncology social workers as part of the team that will work with you and support you as your child receives care at the Center for Cancer and Blood Disorders.
When a child begins treatment, it can be an unsettling and frightening time for families. Social workers will meet with you to learn information that can be helpful in knowing what resources may be available for you. Social workers will also help you identify the best ways to cope while your children are receiving care; help you with issues that may arise with siblings who are also fearful about their brother or sister’s disease; help you decide how best to communicate with other family members, the child’s school, and the parent’s workplace; identify financial resources that may be available; and, assist you in efforts to coordinate support from other family members.
An oncology social worker is there to help you navigate the healthcare system and find support to manage the day-to-day challenges of living with cancer. All these issues and more, are ones that a social worker can help you with.
Throughout the duration of treatment, a social worker is available to help the family with community resources, FMLA paperwork, financial resources, crisis intervention, problem solving and supportive counseling.
Families tell us that they receive much needed emotional support from other family members in the same situation, and by having activities that the entire family can participate in. In response, the Center for Cancer and Blood Disorders developed programs devoted to family activities to meet these needs. Rainbow Kids activities occur on a regular basis, and include all family members. There is also a one week camp that is available for children who have a cancer or a blood disorder.
Sometimes families want to obtain additional information about their child’s diagnosis and treatment. The Emily Center has the ability to help parents obtain additional information and articles about the specific diagnosis their child has. They can also help families identify the most up-to-date and informed web sites to use.
Taking care of the whole person
For most people, a cancer diagnosis brings new feelings and experiences, and an oncology social worker can help you work through these aspects of a cancer diagnosis. Many facets of a person’s life contribute to the response you have to the diagnosis of your child, including ethnicity, spirituality, and family situation. Our social workers may ask questions to find out the best ways to honor and support the unique aspects that every family experiences. Families should feel free to ask about questions about any issues that come up. Every person has a different way of adjusting to a diagnosis for a life threatening or chronic disorder, and our social workers want to make sure they do everything possible to help you find the best ways to cope with this new medical situation.
Families also often have questions about how to tell other siblings about the child’s diagnosis of a cancer or blood disorder. A Child Life Specialist is available to work with the family about how to present the information, or is able to set up a time when the family can bring in the siblings for a discussion about the child’s diagnosis. Child Life Specialists have specific training in the best way to present medical information in language that a child understands.
Understanding new roles and responsibilities
A child with cancer may wonder how parents, siblings, friends and the children at school will react to the diagnosis, especially when there is hair loss. Treatment for cancer is not easily hidden. A child may not be able to participate in the same types of activities they did before. They may have to stay away from large crowds of people at certain points during their therapy. They may tire easily and be unable to keep up with what their peers are doing. They will likely lose their hair. An oncology social worker can help parents find other outlets for their children, help them identify ways to help their child cope with these reactions, and find community resources for additional help.
An oncology social worker can help connect you with the resources you may need to find help while you are supporting your child through their treatment. For some people, this involves a referral to the financial aid office of the hospital, instructions for applying for disability, an explanation of rights covered under the Family Medical Leave Act, or a referral for counseling support. For others, it means learning about support groups at a local community wellness center.
Helping with questions about fertility
One of the issues that parents worry about is whether their children will be able to have their own biological children when they reach adulthood. While parents first priority is to make sure their children survive their cancer, parents also want to know about their child’s ability to have children once they are adults. Chemotherapy may affect the fertility of children who are battling cancer. It is important to have a discussion with the medical team about fertility issues in order to know what options may be available for planning for the future. A social worker can help you raise these issues with the medical team and find resources for help if the family wants to take steps to harvest sperm or eggs.
Adjusting to life after treatment
Many parents find that the months after their child has completed their cancer treatment are especially difficult. In addition to a potentially slow physical recovery, there often are intense worries about future health and returning to a more normal life. There may be behavior changes that place a stress on the family, or the child has fallen behind in or lost interest in school. Oncology social workers can continue to work with you through the period of survivorship, and many people find this an ideal time to process the experience. Others join a support group for survivors and find the best understanding and help from other people in similar situations.
The education of oncology social workers
Oncology social workers at Phoenix Children’s Hospital have a Masters in Social Work (MSW) degree from an accredited university and are licensed by the Arizona Board of Behavioral Health Examiners in addition to training in cancer care through continuing education and on-the-job experience. An oncology social worker is available to provide you the confidential support and resources you need to help manage your child’s cancer or blood disorder treatment in a way that is respectful of your individual needs and wishes.