Coping with hospital stays

Children often need to be in the hospital for treatment soon after they are diagnosed with cancer. Kids also spend time at the hospital for tests and surgeries or to manage side effects. Coping with hospital stays, whether long or short, can be hard for all members of the family, especially if the hospital is far from home.

Being in the hospital can be scary, especially at first. It’s a whole new world, with none of the comfort and familiarity of home. It’s no wonder some children or parents feel out of control or helpless. But there are still many ways to help your child.

As you’ll spend a lot of time at the hospital throughout treatment, it’s a good idea to become familiar and comfortable with the surroundings as soon as you can. Once you become more familiar and comfortable, you can better focus on the needs of your child. As well, kids are more likely to feel comfortable if parents feel comfortable. You can:

• Learn the layout of the hospital and specifically the ward that your child will be in. Find out which areas are for staff only and which are for the public.
• Locate the public washrooms.
• Discover the patient kitchen and see if you can bring some of your child’s favourite foods to the hospital. Are there snack and drink machines close by? Is the cafeteria open to the public, and what are the hours?
• Find out where eating and drinking are allowed in the hospital.
• Learn about your child’s healthcare team and what role they play in caring for your child. They all have specific duties and responsibilities. Learn who you need to talk to for specific requests such as pain medicines or clean pyjamas.
• Talk with the staff about what is expected of the parents in caring for their child and what the staff will provide to your child in your absence. Children often prefer to have parents help them in the bathroom or with bathing. They tend to feel safer and more at ease when parents are part of their treatment and care in the hospital. It can also give you a feeling of control.
• Ask if cell phones can be used in the hospital. If not, get some prepaid phone cards for the payphones so that you don’t have to worry about having the correct change.

When you arrive at the hospital, you can help make things easier for your child by telling the healthcare team about:

• your child’s normal routines, likes and strong dislikes for eating, sleeping and bathing
• special fears your child has, such as fear of the dark, loud noises or needles
• words your child uses to name body parts
• important objects, such as a special toy or stuffed animal
• any special needs your child may have
• the best ways to get your child to cooperate
• aids such as glasses or a hearing aid that your child uses
• how you would like to be involved in your child’s care, such as bathing, changing diapers or feeding

Children of any age will feel more comfortable if you try to create a sense of normal life in the busy, noisy hospital. Of course it’s not quite the same, but you can:

• Keep the same daily routines for eating, sleeping and bathing. (You may need to talk to your nurses so you can coordinate these routines with daily rounds.)
• Bring things from home such as your child’s pillow, blanket and favourite stuffed toys.
• Let your child wear their own clothes or pyjamas.
• Bring a few favourite toys, books or games.
• Decorate the room. First ask the hospital staff if this is OK. If it is, have your child, siblings and friends draw pictures to put up on the walls, or put up posters from home. Put up pictures of family members, pets or the child doing some of their favourite activities. Kids also often like to put up pictures of their room at home or their house. Classmates may send cards or banners that can also be put on the wall.
• Bring in favourite music to listen to. Headphones are a good idea if the child must share a room.
• Ask if you can have a regular “family night” in your child’s room. Some families have a regular pizza or movie night during long hospital stays. This weekly event helps brothers and sisters feel better as well.

Just like at home, you’ll need to set clear, consistent, age-appropriate expectations about how your child behaves. Children find comfort in routine and clear expectations. Of course you can be flexible when your child feels ill or in pain. It’s important to respect and respond to how your child is feeling. But children expect and need adults to set these rules, even when they’re ill. If there are no rules or if rules change a lot, children may worry that their cancer is worse than they have been told or that they are going to die. It may also be hard to re-establish rules later on.

Find ways to be physically active in the hospital. Take short walks to the bathroom or playroom or try simple games that encourage movement (like charades or Simon Says). Moving and stretching can help everyone feel better. It can also help your child to sleep better at night if they are able to do some physical activity during the day.

Even in the hospital, there will be many times when you can offer your child a choice. Whether it’s about red or blue pajamas or an apple or orange for a snack, having a choice helps children feel more in control and less frightened. Children of all ages will often cooperate more easily if they are allowed to make choices that do not cause problems with their treatment or care. Even young children can make decisions about which arm to have their blood pressure taken on, when to take a bath, what to order for meals, what clothes to wear and how to decorate their room. Some children like to have a guest book or poster that must be signed before any procedure is done or vital signs are taken. Some simply like a record of people who look after them or come to visit.

Many hospitals have playrooms or special programs that allow your children to meet other kids who are also in hospital. Some even have outdoor spaces for kids. There may be programs especially for teens such as drop-ins, movies, games or events. It can be really helpful for kids to connect with others who are going through similar things.

Children of all ages need to know that it’s OK to feel mad or sad. Provide safe ways for your child to express anger and other feelings using things like playdough, painting or building blocks for young kids, talking, physical activities, writing, music or art for older kids. Some hospitals provide programs in these areas.

Taking a break from the hospital can be energizing. Even a short break to get some fresh air, go for a walk or run outside or go for a coffee or snack away from the hospital can make a huge difference. Your child may not be able to go outside, but family members can take turns taking some time away. This can help you to be strong and be there for your child.

Hospital time can be very boring with long periods of waiting. Try to be prepared with things to do. Bring a book, puzzles or something to do for you and your child. You could use the time to keep track of what’s happening. Write down the names of your healthcare team and make notes about your child’s tests, side effects and other important information. Many hospitals provide family journals, binders or even apps to help you stay organized. Make the time work for you.

Try to eat well. It will make it easier for you and your child to get through treatment and recover after treatment. In the hospital, all meals and snacks are provided for your child. Talk to the healthcare team if your child has any special likes or dislikes or if your family follows a certain diet or has cultural or religious needs. Many hospitals can adjust the menu for your child.

Although hospitals don’t provide meals for family, they may offer some free snacks like juice, yogurt, popsicles or cereals. Some centres may offer meal trays for an extra cost. Most hospitals have cafeterias or other places to buy food.

There may also be a kitchen where you can store and reheat food from home. Find out from the healthcare team if you can bring food from home and if so, are there any guidelines or rules for using the kitchen. Accept offers of meals from friends and family. Eating out can get expensive and tiresome, so if loved ones are willing to bring home-cooked meals to the hospital, you will likely appreciate this break from eating cafeteria food. Bring in favourite foods from home for your child to eat when they are feeling well.

If there isn’t a kitchen you can use, you may still be able to bring favourite snacks and comfort food to the hospital and keep it in a cooler in your room. A cooler that plugs into the wall may work best.

Getting a good night’s sleep can be pretty hard when you’re dealing with a cancer diagnosis. But being well-rested can make a huge difference in how you are able to cope. Some tips for getting a good night’s sleep include:

• Get cozy. This may mean bringing in your own pillows, blankets or inflatable mattress. Also try to have the right amount of blankets so that you are not too hot or cold.
• Try to establish a bedtime routine every night. Sleep experts say that going to bed at the same time every night and getting up at the same time every morning is an important part of a sleep routine. Following the same steps at night, such as shutting down electronics, getting into comfortable clothes or PJs, brushing your teeth and reading can tell your body that it’s time for sleep.
• Avoid eating too much food or drinking too much before bed. Avoid caffeine. Sometimes having a warm drink or a light snack before bed can help you sleep.
• Try to get some physical activity in during the day so that you are tired. Even getting out for a short walk and getting some fresh air can help.
• Try relaxation techniques or relaxing activities before bed such as reading a book or listening to calming music and dimming the lights.

You may have to go the hospital without having much time to prepare. Have a hospital kit packed and ready to go. Don’t forget to label everything clearly.

• your child’s provincial health card
• your child’s hospital ID card (if your child has one from a previous visit)
• medical information like immunization records, and information about drug reactions or food allergies
• medication calendar or list of any medicines that your child is taking, along with how much is taken (dose) and when (schedule)
• medical aids like braces, corrective shoes, crutches, glasses or hearing aids
• disposable diapers or pull-ups for babies and toddlers
• notepaper and pen
• regular medicines that your child needs to take during a hospital stay
• name, address and telephone number of your referring doctor
• name, address and telephone number of your family doctor
• if you are separated or divorced, any legal papers that show who has custody of your child and who can make decisions about your child’s care

• comfortable clothes for everyday wear, for you and your child
• pajamas, bathrobe and slippers
• toiletries like toothbrush, toothpaste, shampoo, comb or brush
• pillows and blankets from home for you and your child
• a few favourite games, toys, books or family pictures that are important to your child
• school books and current school work
• headphones so that you or your child can watch TV or listen to music without disturbing other kids or parents
• phone cards to make local and long-distance calls
• small change for vending machines