Family participation

Participation from the patient’s family is a vital part of treatment and family members are expected to be actively involved in all family-centered programming. This includes individual weekly meetings with the Center’s social worker, weekly parent group, family meetings, and more.

Although it may vary, we generally expect caregivers or guardians to participate in:

• The admission process: Meeting with the admitting nursing staff and meeting with the physician assistant and/or attending physician; about one hour total, caregivers usually leave around 9 a.m. on the day of admission.
• Meeting with the social worker to discuss your child’s academic needs (this may happen within the first few days of your child’s treatment). The social worker will coordinate this time with you after admission.  
• Meeting with the psychologist during the first Talk Time (approximately 60 minutes, usually on the first or second day of your child’s admission into the program). You will be given the specific time and date of this session on the morning of admission. The psychologist will meet you either in the Day Hospital or in your child’s room, as appropriate.
• Caregiver Group: These weekly mandatory meetings are led by the AMPS team psychologists and social worker and are for caregivers of current AMPS Program patients. The Caregiver Group is held from 9 to 10 a.m. on Wednesdays. Caregivers are expected to attend weekly. We expect at least one caregiver or guardian to attend the Caregiver Group each week. Please notify the team if you are not able to attend a session.
• Weekly updates from the primary treatment team: Members of your child’s primary treatment team will connect with parents/guardians weekly during your child’s treatment to answer questions and give updates on your child’s progress.
• Family meeting: During the latter part of your child’s treatment, there is a mandatory meeting to discuss treatment goals and discharge plans. Caregivers, patients and treatment team members will attend. You will be informed of your family meeting date and time after a discharge date is determined.
• On Discharge: You will need to be available to complete discharge paperwork on the final day of your child’s treatment. The Day Hospital or inpatient nursing staff will complete the discharge paperwork with you. See our Post-Discharge Information.

After completion of the hospital treatment program, children and families are seen in our pain clinic for follow-up.

Frequently asked questions about the AMPS Therapeutic Hospital Treatment Program

How long will my child be in the intensive therapy phase (Phase 1) of the program?

The length of the program is individualized, and it is hard to predict until the patient is at CHOP and participates in the program. The average length of stay is 3-4 weeks, but it can be shorter or longer depending on the individual patient. Our team meets weekly to discuss each patient’s progress in the program and plan a discharge timeline for each patient based on their functional progress. You will be notified as soon as we decide on a discharge date for your child.

My child woke up sick. Should I still bring them to therapy?

Yes. Unless your child has a fever over 101°F, they should participate in the program. After the clinical team evaluates your child, if they are too sick or contagious to participate, we will send your child home. In many cases, symptoms like dizziness, headache, nausea and diarrhea are related to amplified pain, and it is important for your child to work through these symptoms. By working through the symptoms, your child’s nerves will be retrained, and the symptoms will decrease.

Is cell phone use permitted during scheduled therapy?

No. Patients may not send or receive phone calls or text messages while in scheduled therapy sessions because it may interrupt their progress. If you urgently need to reach your child during scheduled therapy, please call the Day Hospital or inpatient nursing staff directly. Patients will bring their phones, as well as smart watches or other Bluetooth devices, to the gym to be locked up for the day. If patients choose to bring headphones, they will be able to use their phone for music during some endurance activities, such as time on the elliptical or treadmill.

Is lunch supplied or does my child need to bring lunch?

For Day Hospital patients, lunch and snacks are provided. For inpatients, all meals are supplied. Patients are responsible for ordering their own meals. Order forms come with lunch each day and are completed and submitted at that time for the following day. Patients can check with the nursing staff with any questions. Please note that while lunches/meals and snacks are provided, patients are also welcome to bring in snacks from home.

May I eat lunch with my child?

Caregivers are not permitted to eat lunch with their child during the program. This is so patients can have lunch with their peers, which will more closely mimic a school day and will assist with their transition back to school.

What should my child do in the evening?

Regardless of whether your child is a Day Hospital patient or inpatient, they should stay active in the evening and go to bed at their scheduled time.

Here are some activity ideas:

• Day Hospital patients: For out-of-area patients staying in Philadelphia, we recommend patients and families explore the city, attend sporting, cultural or other events. We encourage Day Hospital patients staying at home to maintain peer relationships and take part in their normal extracurricular activities.
• Inpatients: Patients may leave the unit with their caregivers to dine in the Main Cafeteria using vouchers. Caregivers can go with their children to the Connelly Resource Center for Families on the eighth floor of the Main Hospital to use the Internet, wash clothes, and check out books and movies. Movies and video games are also offered at the 3 West nursing station. The child life specialist on the rehab unit is also available for assistance with entertainment and activities outside of treatment hours. Additionally, your child can talk to the art therapist who may be able to provide them with creative arts materials in the evenings to complete independently. Patients and families are also encouraged to bring activities from home (such as books, games, movies, art supplies) to use after program hours.

Additionally, all patients will typically be given a stretching program from PT that they have to complete every night, as well as a desensitization program from OT to complete once each evening. Learn more about PT and OT services as part of the AMPS program.

What should my child pack for the program?

A suggested packing list for patients entering the program includes:

Modest clothing the child can exercise in (for example: shorts, leggings, sweatpants, sneakers that tie, t-shirts, sweatshirts), refillable water bottle, fingerless gloves (such as bike riding or weightlifting gloves), headphones for use of listening to music or audio while on exercise equipment, and school books or laptops (at some point in their treatment they may be asked to participate in simulated school activities)

What if my child wants to quit the program?

The AMPS Program is very challenging physically and emotionally, and it is not uncommon for patients to express a desire to leave treatment, particularly if they are having a difficult day. When this occurs, the AMPS treatment team will often talk with your child to try to understand their concerns and provide support.

It is recommended that patients not make the decision to leave the program immediately, but instead, evaluate this decision overnight after thinking further and discussing their desires with their caregivers.

If Day Hospital patients are expressing refusal to come in for program treatment, it can be helpful to ask them to come in to talk to staff, noting that they are not committing to program treatment. We sometimes need to discharge a patient earlier than recommended by our team if the patient is not willing to continue in treatment. We will discuss with the family and provide all our recommendations prior to making an early discharge determination.