What is Pediatric Cancer Related Distress?

What is cancer-related distress?

• Distress is defined as any unpleasant feeling, emotion, or experience that affects you, your child, and your family’s quality of life, as well as the ability to cope with your child’s cancer diagnosis and treatment.
• Distress is a normal and expected side effect of pediatric cancer diagnosis, treatment, and survivorship.
• It is expected that ALL families coping with a pediatric cancer diagnosis will experience some degree of distress.
• A pediatric cancer diagnosis impacts the entire family: distress is typically experienced by the family members in different ways, and at different times for each individual.
• It is important to be aware of distress and how it is impacting your child, you, and your larger family system.
• Distress is a large umbrella term that covers many areas including:
  • Practical issues/challenges (housing, insurance, transportation, disability).
  • Family issues (talking with children, fertility, family support systems).
  • Emotional challenges (depression, fears, nervousness, sadness, worry, loss of interest in usual activities).
  • Spiritual or religious concerns.
  • Physical problems (appearance, fatigue, pain, eating, getting around, sexual function, sleep).

Why am I being asked about our experience and cancer-related distress?

• Your healthcare team wants to know if you and/or your child have distress because we can help manage and reduce your distress. This is an integral piece of your overall cancer care.
• Reducing distress in patients and families coping with cancer is important because it has an impact on patient outcomes, patient-doctor communication, early referrals for services, and the ability to complete the cancer treatment plan.
• All cancer centers that are accredited by the American College of Surgeons Commission on Cancer, including sites that provide care to children, are required to screen all patients for distress, as well as to offer further assessment, education, support, and referrals for services.

Is it normal to feel some cancer-related distress?

• Yes. A cancer diagnosis and associated treatment is a life-changing event. You may suddenly have to deal with new stressors as a result, such as an inability to work or go to school, juggling treatment and your family’s lives, talking to your family and other children about your child’s diagnosis, fear and worry about the treatment and changes to your child’s body, including hair loss and appetite changes, and concerns about your child’s future.
• Adjusting to these changes is hard and can lead to feelings of uncertainty and distress.
• Most families have a capacity for resilience (to be able to bounce back in the face of stress) and thus can manage their distress through self-management techniques.

What can I do to help manage cancer-related distress?

• Recognize that it is OK for your child, yourself, and your family to feel distress, depression, anxiety, sadness, worry, nervousness, and any other emotion
  • Just as it was BEFORE your child was diagnosed with cancer, it is important to eat well, get plenty of rest, and continue to exercise. Walking, swimming, dancing, or yoga are all excellent ways to engage in physical activity while going through cancer treatment.
  • Engage your child in activities that facilitate coping. These can include play, hobbies, art, music, recreational or pet therapy, journaling, and storytelling.
• Identify techniques that you and your family have used to help manage other periods of stress and distress in your life and put those time-trusted techniques to use now.
• Join a support group. Many are available in your community, by phone, or online. Your social worker can help make referrals to support groups in your area. Support groups are available for children, parents, siblings, and even at some schools to help classmates cope. Ask your social worker for referrals.
• Utilize supportive services at your treatment center, like child-life, social work, and pet therapy.

What do I do if our experience with cancer-related distress increases, or impacts our ability to function, or our quality of life?

• Talk to your healthcare team about these feelings and thoughts. We cannot know you are struggling if you do not tell us.
  • Do not be afraid to ask your healthcare team, family, friends, and other support persons for help when you need it.
• Ask for referrals for counseling or therapy. A social worker or navigator can help you identify practitioners who are within your insurance company’s mental health provider network, as well as investigate your mental health benefits.
• Keep a journal or log of your child’s and your distress symptoms. What is happening, when is it occurring and what are your thoughts and feelings during those times? Use this log with your healthcare team to help identify triggers and strategies to relieve distress.