The Pappas PACT Program
The Pappas PACT Program is made possible through the generosity of the Thomas Anthony Pappas Charitable Foundation, whose mission is to improve the lives of cancer patients and their families.
The National Cancer Institute estimates that one of every four adults diagnosed with cancer in the US is a parent to a child under the age of 18. Parenting well is always challenging, but can be even more complicated when dealing with a cancer diagnosis and the physical and emotional demands of medical treatment.
The Pappas PACT (Parenting At a Challenging Time) Program at Newton-Wellesley Hospital helps parents address the challenges of raising children while undergoing cancer treatment. The PACT team provides individual counseling and works with parents who are concerned about the impact their diagnosis and treatment may have on their children.
PACT offers parents the guidance to:
- Explain and discuss the illness with their children
- Address common questions and behavior changes
- Prepare children for hospital visits
- Develop ways to cope with other concerns
The PACT clinician works with parents, drawing on their combined knowledge and experience to develop a plan that each parent can follow to support their child’s continued healthy development. The PACT program began at the Massachusetts General Hospital Cancer Center in 1997, and continues to serve patients and their families there.
The initial meeting usually lasts about an hour. The PACT team knows parents are busy and flexibility is important. The consult can take place on the phone, at the Pappas PACT office within the Cancer Center, during an infusion or in coordination with other cancer-related appointments.
During this visit, the PACT clinician will ask questions to learn about you, the other members of your family, your experience with cancer and your specific concerns. The clinician will talk with you to learn about your child’s age, temperament, behavior and any worries your child may have expressed.
At the end of the consultation, you will be better prepared to talk with your child, make plans to support your child’s coping and to recognize signs when more help is needed. Parents determine the need for follow-up visits.
The Pappas PACT Program serves parents in treatment or care at the Vernon Cancer Center and their family members. Patients do not need to have insurance or request authorization from their insurance company before scheduling an appointment – this service is provided without charge and is funded by the generous donations of our community. The Pappas PACT Program works with other clinical and support services at the Vernon Cancer Center.
Guiding Principles from the PACT Team – A Dozen Lessons Learned
1. Begin by identifying your illness. Call it “breast cancer” or “a brain tumor.” Euphemisms like a “lump,” “bump,” or “boo-boo” are confusing. When you name your cancer, you are telling your child you trust him with honest and open communication.
2. The worst way for a child to hear troubling news is to overhear it. News learned by accident is often confusing and inaccurate. Keep the lines of communication open by letting your child know what is happening and what to expect, straight from you.
3. Welcome all of your child’s questions warmly. Let your child know you are interested in questions about any topic. Be mindful of the settings in which your child is more likely to talk with you, such as in the car, at the kitchen table while you cook or at bedtime.
4. Try to tease out the “real” question your child wants to ask. Ask your child to tell you what she was wondering about, or if there is something else she wants to know. You may find that there is a specific concern or worry that is the “real” question. Many times this specific worry can be more easily addressed than the initial question asked.
5. Not all questions require immediate or detailed answers. It’s all right to say, “That’s a good question. I’ll need to think about it/discuss it with my (spouse, doctor, nurse, social worker or other family member) and get back to you.”
6. Respect a child’s wish not to talk. Do share basic information, as well as anything that may directly affect your child, in order to avoid confusion and surprises. Check in with your child from time to time and ask if he is hearing too much, too little, or the right amount about your illness, treatment and changes at home.
7. Don’t let your child worry alone. Encourage your child to share her worries with you. Sometimes people outside the family say unhelpful things with the kindest intentions. Ask your child to share with you what others may have said about cancer in general, or about your particular condition. Tell your child how varied the illness is.
8. Keep the channels of communication open with key caregivers. This includes grandparents, teachers, babysitters, coaches and the parents of close friends. By keeping them in the communication loop, you make it easier for these adults to provide the appropriate emotional support and stable routine your child needs during your illness.
9. Try to maintain your child’s usual schedule. To help keep the routine as normal as possible, assign a point-person for each child. Post schedules, make lists and use calendars to help your child and caregivers know what each day holds.
10. Carve out protected family time. Turn off the telephone and ask your friends and extended family not to visit at these times. Use this time to check in on the specific details of your child’s day. If you have many offers of help from family and friends, designate a “captain of kindness” to serve as a liaison for your volunteers.
11. Hospital visits often help children feel less worried. Talk with your medical team about good times for a family visit. Have extra support people accompany your children to the hospital. Be sure to have an adult check in with your child after the visit to hear about the child’s experience and to address any confusion or worries.
12. Take care of yourself. Parents with cancer and their spouses or co-parents need to be mindful of their own well-being and its impact on their children. Children can feel secure and hopeful when they know their parent is receiving excellent care, is able to appreciate today and has hopes for the future.
For more information or to schedule a consultation, please call 617-219-1230 or talk to a member of your health care team. Directions
Patients do not need to have insurance or request authorization from their insurance company before scheduling an appointment -- this service is provided without charge and is funded by the Thomas Anthony Pappas Charitable Foundation.
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