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Admission to the hospital is something none of us wants to do, but is also something many people experience at least once in their lifetime. For children with special needs or disabilities, hospital admission can be more complicated with more things to consider.
Admission to the hospital may happen as a result of a visit to the emergency room, or your child might be sent to the hospital after a visit with his primary care clinician. Sometimes hospital admissions are planned ahead for surgeries, medical procedures, and treatment. Some children with special health care and medical needs may experience multiple hospital admissions for many different reasons. Many families of children with special health care needs are all too familiar with the process of hospital admissions. Whether your child is admitted to the hospital only rarely, or he is a “frequent flyer,” you can help make the experience easier on everyone by taking a proactive role and learning about the process of admissions, inpatient stays, and discharge.
Parents of children in the hospital often feel uneducated and intimidated by the hospital processes, which can seem overwhelming. The more you are involved, the more those feelings will dissipate and you’ll be able to advocate for your child in the hospital setting. Ask questions, and ask for more explanation when you need it. Letting health care professionals know you want to be involved and work with them as your child’s advocate on the health care team will help both you and the professionals to feel comfortable working together.
Hospital admission requires criteria for admission, which is usually provided by a doctor, and patient information, which will be provided by you. Patient information is the paperwork that you will be asked to fill out, or it will be entered into a computer by hospital staff. If you have a child who has a medical history, it is helpful to have information available in a care notebook or something similar. A care notebook is a binder families use to keep their child's entire medical and care information in one place. Much of the information in your care notebook is what you will need to fill in the admission forms. This can be one of your best tools, especially when used at hospital admission and health care visits. To assemble your own Care Notebook, go to: Care Notebook.
When your child is being admitted into the hospital, here are some things to consider:
- Have we been informed of our patient rights?
- If we have communication needs, are they being met? (language interpreter, assistive device, etc.)
- If I am having trouble filling out admission forms, can someone help me?
- Are we being treated with dignity and respect in a culturally competent manner?
- Does my child have needs that may affect her care? Have I communicated these needs to the health care team?
- Do I truly understand what is going on? Have things been explained to me at a level that I can understand?
- Is my child being included to the best of his ability?
Even if your child is being admitted to the hospital in an emergency situation, and decisions are being made based on emergency criteria, as a parent, you have the right to be informed of everything that is happening and to be included in decision making.
If your child is sent to the hospital for admission from a visit at a doctor’s office, it is usually because there is an immediate concern, and the physician felt it was best for your child to be in the hospital. In these physician referral situations, the admission process may begin in the admissions office or through the emergency room.
If your child is being admitted to the hospital for surgery or treatment, you will likely complete much of the admissions process well beforehand, and will arrive at the hospital with most of the paperwork completed. It is still good to bring your child's care notebook or medical history, just in case you need it.
Some children with special health care and medical needs are frequently admitted to the hospital, and sometimes without much notice. It can be helpful for families to be prepared for these multiple trips to the hospital. Here are a few suggestions to make these trips a little easier.
- Pack a “go bag” for yourself and one for your child. Keep these bags somewhere that you can grab them and go. A go bag will contain your toothbrush, personal items, comfortable clothes, a book or something to read, and maybe some snacks or change for vending machines. For your child, you’ll want to include some comfort items, like a favorite toy or a movie to watch, and his own toothbrush. It is hard enough having to go to the hospital without knowing ahead, but having some of your things with you can make things go smoother.
- Have a few friends, family members, or neighbors who you can call to take care of your other children, house, or pets. It helps to talk with a few people ahead of time and ask them if they can help out if you’re in a jam. They may be able to come get your kids and watch them, collect your mail, or feed your dog.
- Don't forget your care notebook! Keep it in a place that is easy to access when leaving your house.
If your child is admitted to the hospital, it usually means she’ll be staying a day or more. As your child settles into her room, you will meet new hospital staff and a new health care team.
As an inpatient, your child will usually have a nurse, attending physician or hospitalist, and other team members, such as a resident physician, respiratory therapist, social worker, CNA, or other health professionals.
As a parent, it is your right to be informed of what is happening with your child. If you want to be part of the health care team, let the attending physician and nurse know. You can even be part of meetings or rounds involving your child.
While staying at the hospital, your child will be cared for by people who may not know him. Sometimes, doctors, nurses, or other health care professionals may come into the room and begin to talk with you without introducing themselves and their title. Do not hesitate to ask who they are and how they are related to your child’s case; it is important that you know with whom you’re talking. Some hospitals have whiteboards in the rooms that will indicate who your child’s health care team members are, for example: Attending Physician – John Smith, Resident Physician – Cathy Bush, RN – Joe Johnson. These boards can also be effective for communication between you and the staff. You can write your questions, needs, or preferences on the board. If your hospital room does not have a whiteboard, create something yourself. A sheet of paper could do, but remember, if your child is in the hospital for multiple days, his medical team may change as the doctors or nurses change shifts or duties.
It can be helpful to put up signs that let nurses and doctors know more about your child. One parent we know always puts up a sign at her child’s bedside that states, “Hi, my name is Adam. I have non-verbal speech impairment, so I do not use words to communicate. I can understand what you are saying. Please introduce yourself to me and talk to me, too.” Another parent puts signs up to remind nurses of a specific way her child needs to be suctioned, and another posted signs to not disturb his child when he was sleeping. Signs can serve as friendly visual reminders for professionals who see multiple patients and sometimes need to be reminded of special circumstances.
Sometimes a child (and family) needs to learn about an upcoming surgery or procedure. Some hospitals have Child Life departments and specialists to educate, ease anxiety, address fears, and explain benefits of particular surgeries or procedures. Children sometimes get bored in the hospital, and Child Life may also be able to assist with activities for your child, taking the focus off what is happening and keeping her entertained. Some hospitals have video, book, and toy lending libraries. Ask your child’s nurse if these services are available at your hospital. It’s also a great idea to bring a few things from home, such as toys to play with, books to read, or videos to watch.
Discharge is the process of leaving the hospital, but leaving is the final step. Discharge includes planning and preparing for your child and family's needs when you go home. Discharge can take hours, or sometimes days to prepare and complete.
Many different people are involved in the discharge process, including the patient and family, attending physicians, resident physicians, nurse practitioners, nurses, pharmacists, case managers, discharge planners, social workers, and sometimes home care professionals.
Sometimes discharge can be more complicated. You may need to make arrangements for medication, home health care and supplies, and follow up care. As a family, it is also important to learn how to safely and confidently care for your child at home. Nurses, social workers, and other hospital staff can involve and assist you and your child by answering questions, helping you make decisions about ongoing care, ordering home care supplies, arranging follow-up appointments, and helping you find community services and supports.
Here is a discharge checklist from an experienced parent:
- Are you confident about taking your child home? Sometimes parents feel or know that the child is not ready, for one reason or another. If you think he should stay another day because he is still too sick to go home, or you feel you need more education about special care, make sure to let the attending physician know, and explain your concerns.
- Has everything regarding your child’s hospital stay, ongoing health issues, prescriptions, and follow-up care been communicated to your child’s primary care physician? If not, ask the nurse to have the records sent. If your child does not have a primary care physician, you may need to choose one. If you need assistance with this, ask if you can see a social worker.
- Do you have everything you need to take care of your child when you get home? Sometimes the delivery of home care supplies can take a while. If there is anything your child is using in the hospital that he will need at home—for example, suction catheters, oxygen, g-tube supplies—ask the nurse if you can take a small supply of these items home to use until home care supplies arrive.
- Do you have and understand the discharge papers? Make sure you can read them and thoroughly understand them. When you leave the hospital, make sure you know where you put them. In the rush of finally getting to go home, such paperwork is easily lost (remember, this is experience talking). Once you are home, you will need them for instructions, referrals, and phone numbers. If you keep a care notebook for your child, you can keep the discharge papers in it.
- Do you have phone numbers to call if you have questions after you are home? You may still be able to contact the attending physician from the hospital, and you can also call your child’s primary care physician. If you have a complicated child, and your physician’s office has on-call service, ask your physician to give the other doctors a “heads up” about your child, and inform them that you may be calling after-hours.
- Go home and enjoy it! Even though things may still feel stressful, you are home with your child and family. Eat some real food, sleep in your own beds, get some rest, and enjoy.