Dani’s Foundation cannot stress enough the importance of building a healthcare team who will work with you in your journey through your child’s cancer treatment.
Your healthcare team should include:
Other physicians that may be needed to assist with your child’s treatment may include:
Other specialists that can be of assistance to your child’s case are
Social Worker Support Services
Now that you have your physicians in place, you should begin to work closely with your physician/hospital social worker. For people diagnosed with cancer, an oncology social worker is an important member of the health care team. An oncology social worker provides counseling, education, and information services, and referrals to community resources to people with cancer and their families and friends. In addition, an oncology social worker helps people navigate the health care system and find support to manage the day-to-day challenges of living with cancer.
Taking care of the whole person
For most people, a cancer diagnosis brings new feelings and experiences, and an oncology social worker can help people work through these aspects of a cancer diagnosis. An oncology social worker understands that there are many aspects of a person’s life that contribute to his or her cancer experience, such as a person’s ethnicity, spirituality, and family situation, and that cancer affects each person in a different way. He or she talks to people about the different aspects of adjusting to the cancer, and helps find strategies to adapt to and manage health care concerns. Talking with a professional who has helped other people manage similar situations may help a person find ways to improve his or her quality of life, manage fears, and find hope. This process can happen through individual, couples, and family counseling; support groups; and referrals to community agencies that have additional support programs.
Understanding new roles and responsibilities
A person with cancer may wonder how parents, children, friends, and coworkers will react to the diagnosis. An oncology social worker can help a person cope with these reactions. People may also wonder if there will be changes in their ability and desire to keep up with the many responsibilities of their life, such as a demanding job, taking care of young children, or helping an older parent. A social worker can arrange a meeting to talk about how those roles and responsibilities might change, and about what kind of support a person needs while going through treatment.
A bridge to the medical care team
Another role of an oncology social worker is a liaison between the person with cancer and the medical team. Because an oncology social worker has advanced training in cancer treatment and how these treatments affect a person with cancer, he or she can help people and their families understand the treatment options. For example, an oncology social worker helps gather and organize the information people need to make decisions about their care and arrange a meeting with the patient, family members, and the medical team to discuss the patient’s care and treatment options. A social worker can also refer people to additional educational resources and to community organizations that have information about cancer and treatment.
Accessing resources
An oncology social worker helps people connect to the resources they need to find practical help. For some people, this involves a referral to the financial aid office of the hospital, or instructions for applying for disability, or an explanation of rights covered under the Family Medical Leave Act. For others, it means learning about support groups at a local community wellness center. An oncology social worker can also help begin discussions about the cost of cancer care.
Adjusting to life after treatment
Many people find that the months after completing cancer treatment are especially difficult. In addition to a slow physical recovery, there often are intense worries about future health and returning to a more normal life. Oncology social workers can continue to work with individuals 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.
Patient Navigators
Patient navigation is a way to help people find their way through the health care system. This type of care management provides one-on-one help to access and learn about cancer services from detection through treatment. Patient navigation also helps break down common obstacles to receiving care.
This approach began in 1990 and is becoming an important part of cancer care. More than 200 cancer care programs in the United States have some form of patient navigation. Patient navigators may be based in hospitals or in local communities.
Navigation services often begin when a person receives a cancer diagnosis or abnormal test result, although some navigation programs promote cancer screening or prevention before a cancer diagnosis. Some navigation programs may also begin when a person is scheduled for surgery or starts cancer treatment.
Why navigation is important
A goal of patient navigation is to make sure that people with cancer receive a proper diagnosis, begin treatment as early as possible, and understand their treatment options and care plans.
However, the health care system often is confusing, and some people have no one to help them. Patient navigation is a bridge between the complex health care system and the person with cancer.
There are a number of reasons why some people have trouble finding and receiving high- quality cancer care. Some examples include:
These barriers may result in health disparities, which are differences in obtaining cancer care or unequal treatment results among specific population groups, including racial and ethnic minority groups. Research shows that people from historically minority populations in the United States have poorer health, encounter more obstacles to receiving care, and are more likely to receive poor-quality care than other Americans. Among people with cancer, those who have lower incomes and belong to minority groups are often diagnosed later and have lower five-year survival rates (percentage of people who survive at least five years after the cancer is detected, excluding those who die from other diseases).
The role of a patient navigator
A patient navigator (sometimes called a health navigator) may be a health care professional, such as a nurse, social worker, or case manager. A navigator may also be a trained layperson, sometimes a volunteer who is a cancer survivor.
The navigator learns a person’s needs and problems that hinder care. Working with knowledge of the community’s resources, the navigator then uses a problem-solving approach to address them. Navigators also may provide cancer information, connect the patient to cancer resources, and lend emotional support. Their goal is to teach people with cancer how to successfully manage their own care.
Navigation services
Patient navigation services vary by the program and the patient’s needs. A patient navigator may offer these services.
Benefits of navigation
First, navigation recognizes and meets the needs of patients that may otherwise have gone unmet.
Navigation improves patients’ abilities to access cancer services.
For instance, it can increase use of cancer screening tests and getting follow-up care when the test result is abnormal.
Some patients believe that navigation improves their emotional and physical health.
By removing barriers to early diagnosis and treatment, patient navigation can help save lives. The first navigation program, in New York City’s Harlem community, helped increase survival rates among mainly low-income and uninsured women with breast cancer.
The National Cancer Institute created the Patient Navigation Research Program to learn how navigation may benefit underserved patients. The program studies whether navigation improves the timeliness of cancer diagnosis and treatment, is cost-effective, and meets patients’ needs.
How to find a patient navigator
To find patient navigation programs in your area, try one of these options:
Counseling
Cancer is a disease that affects a person’s physical and emotional health, and distress and anxiety are common for people coping with cancer and those who care about them. Fortunately, counseling can help reduce stress, improve coping and decision-making skills, and improve overall quality of life.
In counseling, the clients (patients) talk about their problems and receive guidance and advice from a trained mental health professional. Although the terms counseling and therapy (or psychotherapy) are often used interchangeably, counseling aims to find solutions to specific, immediate problems (such as coping with the side effects of cancer treatment). Learn more about the benefits of counseling. Therapy usually involves a longer, more intensive exploration of life issues or treatment of more serious conditions, such as clinical depression.
The types of counseling include individual counseling, family counseling, couples or marriage counseling, and group counseling (where individuals with similar problems meet in a group led by a counselor). Counseling services are found at a hospital, in a community or clinic setting, or in a private practice setting (at the counselor’s office or home). The type of counseling you choose depends on the goal of therapy, cost, and whether you prefer a group or individual setting.
Types of counselors
In most cases, mental health professionals must complete specialized training and pass a state examination before becoming a licensed counselor. A variety of mental health professionals are qualified to provide counseling services.
Psychiatrists are medical doctors (MDs) who specialize in the diagnosis and treatment of mental disorders. Psychiatrists can prescribe medications to help treat mental disorders and emotional problems, such as anxiety and depression, in addition to providing counseling.
Psychologists have a doctoral degree (PhD, PsyD, EdD) and advanced training in diagnosing and treating mental disorders. Psychologists who conduct counseling or therapy usually have a doctoral degree in clinical or counseling psychology.
Licensed clinical social workers (LCSW), or psychiatric social workers, have at least a master’s degree in social work and advanced training in counseling. In addition to providing counseling, social workers specialize in connecting patients with community resources and providing practical assistance, such as managing health insurance issues.
Oncology social workers have specialized training in how a diagnosis of cancer affects a person and his or her family and friends. An oncology social worker provides services, such as counseling, education, and information and referrals to community resources, including support groups. An oncology social worker often acts as a liaison between people with cancer and the medical team, and helps people find ways to navigate the health care system. Learn more about how an oncology social worker can help.
Psychiatric clinical nurse specialists (or psychiatric nurse practitioners) are registered nurses who have at least a master’s degree in psychiatric mental health nursing. They specialize in treating mental disorders and are trained to conduct counseling.
Licensed professional counselors have at least a master’s degree in counseling.
Licensed marriage and family therapists have at least a master’s degree in marriage or family therapy or a related field of psychology and specialized training in conducting counseling with couples or families.
Licensed pastoral counselors have at least a master’s degree in ministry or divinity and specialized training in counseling. Licensed pastoral counselors conduct counseling in the context of religion and spirituality.
Finding a counselor
Before looking for a counselor, consider the type of counseling you need. Talk with your oncologist, nurse, or social worker about the types of problems you have to decide what type of counseling might be best. If you are experiencing emotional problems such as depression and anxiety that do not improve over time, you may need to see a psychiatrist or clinical psychologist. If you are looking for more practical advice or general emotional support, you might consider a clinical social worker or a support group facilitated by a counselor.
Here are some tips for finding a counselor:
Choosing the right counselor
Once you have a list of potential counselors, it is a good idea to briefly interview each counselor on the telephone before choosing one. There may be a cost to do the phone interview.
Many people feel nervous when talking to a new person about personal issues, including a new counselor. The success of counseling often depends on how well the counselor and client fit together as people, and not every counselor will be a good match for you. If after several sessions you do not feel comfortable talking with your counselor, or you don’t think that your counselor’s suggestions are helpful, you may want to consider finding a new one.
Paying for counseling
Counseling is expensive, so it is important to address payment issues before beginning. In general, the cost of counseling is determined by the counselor’s degree of training and by the setting. Psychiatrists and clinical psychologists usually charge more than licensed social workers or licensed professional counselors. Counseling delivered in a private-practice setting usually costs more than counseling delivered in a clinic or community setting. Group counseling is often less expensive than individual counseling.
Locating a counselor
The following organizations offer referral services to help people with cancer and those who care about them locate counselors:
CancerCare provides counseling performed by oncology social workers (by telephone nationwide or face-to-face at locations in the New York City area).
The American Psychosocial Oncology Society provides a toll-free helpline (866-276-7443) for people with cancer and their caregivers to find counseling services in their local communities.
The American Psychological Association’s (APA) Help Center offers an online Psychologist Locator Service.
Findapsychologist.org is a searchable database by the National Register of Health Service Providers in Psychology for locating doctoral-level psychologists in the United States and Canada.
Mental Health America provides a directory of local mental health associations (listed by state and county) that connect clients with local mental health services.
TherapistLocator.net, a service of The American Association of Marriage and Family Therapy, is a searchable database of marriage and family therapists in the United States and abroad.
Most Importantly…
Last, but surely not least, is the ability to work with your physician(s), specialist(s) and your hospital on the financial obligation that is associated with your child’s cancer treatment. Your social worker should be able to assist with telling you who to talk to at each office to insure that they are aware of your current financial situation and can work with you on how to proceed with the payment for your child’s treatment.
The social worker can assist with providing information on other insurance opportunities available in your state of treatment including:
And, the social worker can work with you on additional resources which are available through local organizations and foundations. These programs can help to defray the cost of some treatments and or human needs to those patients and their families who are considered “in need” of additional support.
Do not be afraid to ask for support! A variety of professionals are available to assist throughout your child’s cancer treatment; all you have to do is ASK!
