PARENTS / CAREGIVER

Making Sense of it All

Parenting  has its ups and downs when your child (or children) are healthy. But when your child is ill or injured, and if you have other healthy children, parenting becomes a more difficult balancing act.

Making Sense of it All

Parenting  has its ups and downs when your child (or children) are healthy. But when your child is ill or injured, and if you have other healthy children, parenting becomes a more difficult balancing act.

Parenting while in the hospital has its own challenges. You will have your own fears and worries and so will your child and other family members. Remember everyone reacts and copes in different ways. You may feel or express emotions differently from your child or your family members. This may be hard to understand why and can stress your relationships.

What can help you parent in and outside the hospital is to understand your child’s reaction, how their age affects their reaction, how to keep to routine, as well as other tips to help your whole family cope.

Parenting while in the hospital has its own challenges. You will have your own fears and worries and so will your child and other family members. Remember everyone reacts and copes in different ways. You may feel or express emotions differently from your child or your family members. This may be hard to understand why and can stress your relationships.

What can help you parent in and outside the hospital is to understand your child’s reaction, how their age affects their reaction, how to keep to routine, as well as other tips to help your whole family cope.

Taking Care of Your Entire Family

Leaving the Hospital

The day your child is discharged from the hospital can be filled with many mixed emotions. You may feel happy, relieved, and excited to have your whole family back at home again, but it’s common to also feel scared, nervous, or not ready to care for your child without the hospital staff. It’s helpful to talk to your son or daughter’s doctor or nurse about what you can expect at home and who to call if you need help.

Questions to ask before discharge:

  1. What medicines will my child need to take at home?
  2. How often does my child need to take these medicines? For how long?
  3. Is there anything my child isn’t allowed to do? For how long?
  4. Are there foods my child shouldn’t eat? For how long?
  5. What medical care do I have to give my child at home? How often?
  6. What follow-up appointments do I need to make?

After returning home, everyone in your family will need time to re-adjust. You may find that you will cope with this adjustment differently than your child. It’s common for family members to react and cope in different ways. Remember to be patient with everyone. You might find yourself having the following thoughts, feelings and actions:


Even though these reactions are common, if they begin to get in the way of your daily life or last more than one month, it might be a sign you need extra help from a professional. You can talk to your doctor, a clergy member, or counselor for help in coping with your child’s illness or injury.

As you and your family adjust to life at home, it’s important to get back to a routine and to renew relationships. Getting back to a routine can help your child, family and yourself feel safe, organized, and in control again. While it may be tempting to relax any house rules or routines, it is better to keep them the same.

Tips to Set up a Routine
  1. Keep the same morning routine and breakfast time – this makes starting the day easier.
  2. Set up a family check in routine – this can happen in the morning to help plan the day, or at any time that works for your family.
  3. Don’t forget about playtime! Setting aside a set time for your child and family to have fun is important. Playing your favorite games, reading, drawing, or watching movies are all great ways to have fun!
  4. Just like the morning routine, keep to the same night routine – Have a dinner and bedtime routine to help everyone relax at the end of the day. Dinnertime can be a great way to talk about what happened during the day. Taking a bath or reading a bedtime story can help your child unwind and go sleep easier.
  5. Remember to schedule time for yourself! Set time to check in with yourself each day. Take time to breathe, relax, and think about what is going well in your life at the moment.
Parenting your ill or injured child and siblings
  1. While your children may not be aware of what is going on, they pick up on a lot.
  2. Do not get frustrated when your child regresses.
  3. Continue to parent your children. Keep in mind realistic expectations.
  4. For your other children (siblings), if they feel scared, let them know it is okay to come to you.
  1. Reassure your children that the feelings that they are feeling are normal and help them work through them.
  2. Siblings may feel jealous or hurt because a lot of attention is given to their sibling because they are sick or hurt.  Teach them that they can still have fun by doing family activities such as hospital slumber parties, movies or playing games.
Always remember, no one expects an illness to happen to their child. When it does, it’s a traumatic experience, and it’s common for you and your child to feel upset, scared or worried at first. Hospitals and/or clinics can be strange and scary places for both you and your child. You might not know where to find things or who to ask for help.

When your child is in the hospital, it’s normal to feel sad, upset or even guilty the first couple times you see your child in a hospital bed, hooked up to machines or feeling sick. You may feel upset, or even helpless, as your role of caregiver to your child changes over the course of their illness or hospital stay.

Keep in mind, you are the expert on your child. You know how best to comfort them and it’s okay to let the hospital staff know what works. Depending on the medical equipment needed, you may not be able to put your child at ease, and it can be helpful to ask the doctors and nurses how you can help your child. You can also work with the nurses to create a home-like setting in the hospital room. Bringing pictures or favorite items, like a toy, book, or pillowcase, can make the room more comforting.

Just like bringing in items from home comforts your child, remember whether in the hospital or not, you are a source of strength and a role model for your child. Even though it may be hard at times, answering your son or daughter’s questions, being honest about what is happening, and reassuring them that the hospital staff is doing everything they can to help will put your child’s fears and worries at ease.

Dealing with your child’s time at the hospital or clinic

The hospital environment:

  1. Think about what makes your child comfortable (ex: they do not like hospital pajamas so you may bring some from home).
  2. Keep your child’s toys in organized tubs and bring them to the hospital.
  3. Boundaries are important, it is okay to say no visitors.
  4. Suggest that visitors meet you in the hospital cafeteria instead of the room, if your child is not up to having visitors.
  5. If you have to stay at the hospital, bring food from home.
  6. Depending on their age, include siblings in appointments and hospital stays.  Long hospital stays can be lonely and isolating for many family members.

Specific situations:

  1. When your child has to fast (not eat) for a procedure it is helpful if you fast too.  Have on hand the foods that your child would want, once they are able to eat again. If you do have/want to eat when your child is not able to, leave the room so they do not see you eating.
  2. Be honest with your child, if it will hurt, let them know (ex: procedures).
  3. Consider having a close friend or family member take notes during meetings about your child’s care.

Reaching out for help:

  1. Utilize the hospital staff such as your child’s child life specialist and music therapist, if available. These therapies can be good, even for toddlers.
  2. Seek what external help exists while you are in the hospital (ex: Ronald McDonald House, Ronald McDonald Room, social work department for meal or parking assistance).

Keep track of everything!

  1. Keep a notebook with details of conversations with doctors, medicines, etc.
  2. Write down any questions that you may have for hospital staff.
  3. Keep a notebook for other record keeping-gifts, meals, or services for thank you notes.
Understanding Medical Terms

What did they say? When a doctor speaks it may sound like a different language. It is hard to focus or ask questions when you do not understand what they are saying. All those terms, what do they mean?

If you find yourself listening to the doctor speak and do understand what they are saying, ask the doctor to stop so you can ask questions or ask to have the information re-explained using different words. You may also want to:

  1. Write down terms that you do not know or ask the doctor to write it down for you so you can look it up later.  A good online medical dictionary can be found at https://medlineplus.gov/mplusdictionary.html.
  2. Did the doctor use letters instead of a word like MRI, CT or EEG?   Ask them what those letters stand for and ask them to explain them further.
  3. If you have a family meeting scheduled you may want to think about having a family member present to take notes. This will allow you to focus on what the doctor says and reflect back on the notes at a later time to see if you have any additional questions.
  4. Ask for other materials or handouts to help you better understand.
  5. Use the teach back method. Listen to what the doctor says then repeat back so you can confirm that you have the information correct.
  6. If needed, ask for a little time to think about everything. Ask for a follow up meeting to discuss any additional questions or make decisions on treatment options.

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