The role of a caregiver in the hospital
During 131I-MIBG therapy, a minimum of two adults must take on the role of family caregiver, with one individual available on the premises of the hospital during the full duration of your child’s hospitalization. The designated family caregivers will alternate for the duration of the admission so that one caregiver is present on site at all times.
While your child is receiving 131I-MIBG therapy, you are expected to actively participate in your child’s care throughout their treatment. Nurses and doctors will provide necessary medical care but will try to limit how often they come in the room to reduce their exposure to radiation. Some responsibilities for the caregiver include helping your child take medications, go to the bathroom, eat and do other necessary activities. All caregivers, including family caregivers, must follow strict radiation protection guidelines during this treatment to limit their exposure to radiation. Many safeguards will be in place, such as wearing protective clothing, assisting your child from behind lead shields and wearing dosimeters to measure radiation exposure.
What are my responsibilities as a family caregiver?
The family caregiver will be asked to participate in many aspects of care.
Your responsibilities will include:
- following instructions from your child's health-care team
- participating in all 131I-MIBG and radiation safety education provided by hospital staff
What can/should I bring to the hospital?
You can bring your luggage and belongings into the caregiver area or anteroom, a room connected to but separate from the patient area. You will need to bring a pair of closed-toe shoes to be worn at all times. Do not bring any personal items into the patient area without prior approval from the radiation safety officer (RSO). Items brought into the patient side of the room may become contaminated with radiation after 131I-MIBG has been given and may have to stay at the hospital for up to three months. All personal items will be screened by the RSO before discharge and returned to you at a later date if found to have radiation contamination.
You should plan to leave anything at home that you do not want stored for prolonged periods of time. Any item your child handles—including clothing, blankets and toys—could become contaminated with 131I-MIBG. These items will be treated as radioactive and cannot be returned to you right away. It is recommended that you have duplicates of special toys, blankets or drinking cups/bottles that your child finds comforting so they will not miss them when they leave the hospital. Child life specialists may also provide activities and small toys for your child during their admission.
What general restrictions will I have to follow during treatment?
You must limit direct physical contact with your child during this treatment. You will be guided daily by the RSO and nursing staff as to the amount of time you can spend in close proximity to your child.
When you are not providing direct care to your child, you will need to stay in the family caregiver area. This is an area within the patient room for family caregivers to stay and sleep. For more information about the 131I-MIBG suite, please see 131I-MIBG therapy for high-risk neuroblastoma.
Will I be exposed to radiation?
You will be exposed to radiation during treatment. Your radiation exposure will be kept “as low as reasonably achievable” (ALARA) by following the guidelines and instructions that your child’s care team gives you. How well you follow the recommended precautions will greatly affect the radiation dose you receive. By following the precautions outlined, you will not only minimize your radiation dose but also the radiation dose to others (by not spreading radiation contamination). The actual risks of harm are very low, but we have an obligation to keep radiation exposure as low as possible for everyone.
The Canadian Nuclear Safety Commission limits a family caregiver’s radiation exposure, and this is closely monitored by the RSO at the hospital.
Exposure to radiation can be divided into two basic categories:
1. External radiation exposure
You will be exposed to gamma radiation being emitted from the 131I-MIBG that is in your child. The gamma radiation is emitted from your child in all directions, similar to a light bulb giving off light. The closer you are to your child, the higher level of gamma radiation you will receive. Another source of gamma radiation exposure is urine. This is why your child will have a Foley catheter in place to collect urine directly into a bag that is stored in a lead box during treatment.
To prevent or reduce your exposure to external radiation:
- Minimize the time you spend near your child.
- Maximize the distance between you and your child as much as possible (radiation levels fall rapidly with distance).
- Stay in the family caregiver area as much as possible.
- Stay behind the lead shields when helping your child.
- Use good hygiene practices (frequent handwashing).
2. Internal radiation exposure
This type of exposure mainly results from contamination of 131I-MIBG on the hands. Any 131I-MIBG contamination on the hands can be transferred to food items and can enter the body when you eat. Once the 131I-MIBG is in your body, exposure to radiation occurs. Because of the precautions taken during therapy, this type of exposure is highly unlikely.
To prevent or reduce your exposure to internal radiation:
- Wear personal protective equipment (PPE) when entering the patient care area. This is especially important when touching your child or anything that your child has touched.
- You will be told how to properly enter and exit the patient care area according to radiation safety principles.
- Do not eat or drink while in the 131I-MIBG suite.
- Wash your hands often, especially after caring for your child and before leaving the 131I-MIBG suite.
What precautions will I have to take when entering the room?
All patient caregivers must put on personal protective equipment (PPE) before going into the patient area:
- Closed-toe shoes
- Disposable shoe covers
- Two (2) pairs of disposable gloves
- Disposable gown
- Eye shield, if needed
- Hairnet, if needed
- An electronic dosimeter
How will I monitor my radiation levels?
Family caregivers are given their own electronic radiation monitoring device called a dosimeter. You must wear the dosimeter at all times while in the 131I-MIBG suite. This device measures your radiation exposure during your child’s stay in the hospital. Hospital staff will teach family caregivers how to use the dosimeter. Instructions for the dosimeter will also be posted in the anteroom. All readings must be recorded in the dosimeter log and will be checked daily by the RSO.
What will I have to do when leaving the patient area?
When leaving the patient area, you will remove your PPE and monitor for radiation contamination on yourself. Before your child starts 131I-MIBG therapy, staff will teach family caregivers how to safely remove and dispose of PPE and check for contamination.
How is radioactive waste handled?
All the waste collected in the waste containers during the treatment is most likely contaminated and must be treated as radioactive waste. This waste is to be left in the patient care area and will be collected daily by the RSO. It is taken to a specialized waste storage facility and held for approximately three months. After three months, 131I-MIBG radiation will be gone, and the waste can then be disposed of as normal medical waste.
Other considerations: Pregnancy, other visitors
Pregnant individuals may not act as a designated family caregiver and will not be allowed in the 131I-MIBG suite. If there is a pregnant individual living in the house, the RSO will discuss safety precautions prior to discharge home. It may be necessary to have your child stay in the hospital longer.
No other visitors are allowed besides the designated family caregivers.
How will emergencies be handled?
Your child will receive the same level of care as any patient would in an emergency. If your child needs to receive intensive care support, the Pediatric Intensive Care Unit (PICU) staff will discuss with the 131I-MIBG care team and RSO if care will be provided in the 131I-MIBG suite or in the PICU. This will depend on the radiation levels your child is emitting and the level of care your child requires.