When Your Child is in the

HospitalA Guide for

Caregivers of Hospitalized Children

When Your Child is in the

Hospital

When Your Child is in the

HospitalA Guide for Caregivers of

Hospitalized Children

When Your Child is in the

Hospital

First and foremost...

You are the most important person to your child.

ADVOCATEad•vuh•keyt verb to speak in support of another person

Your role as a caregiver is very important to your child’s recovery. By simply being present with your child in the hospital, you are helping them tremendously through this tough time. You know your child best and you know what works for your child. Do not hesitate to speak up and tell the healthcare team your child’s preferences, what works best for your child, or anything else that might enhance your child’s hospital experience. You are not only helping the healthcare team by sharing this information - you, in fact, are an important member of the healthcare team. You can advocate to ensure the best treatment plan is in place and to remind the team to treat your child for who he or she is rather than just focusing on the illness or condition your child faces. Know your role as your child’s caregiver and provide plenty of love and encouragement to your child throughout their hospital experience. Stand confident in what you know about your child and how you can contribute to the treatment provided by the healthcare team.

ADVOCATE

Know Your ResourcesChild Life

Your Hospital

During your hospital stay, you will likely meet a child life specialist. These healthcare professionals are committed to promoting the emotional health of children and minimizing the stress of the hospital setting. Child life specialists use play, therapeutic activities, and developmentally appropriate education to help children and adolescents during their hospital stay. They can also prepare children for procedures and support children as procedures are happening. Child life specialists can help you adjust to your role in the hospital setting and give you special ways to support your child during this time.

While each hospital may look very different, every hospital has resources to help you through your child’s hospitalization. Speak with a healthcare professional at your hospital to understand what these resources are for you.

Examples of resources at your hospital may include:

Family LoungeFamily Kitchen

Family Lending Library Educational BooksBusiness CenterOutdoor Areas

Chaplain ServicesQuiet Spaces

Asthma

WHAT TO EXPECT:Common Hospitalization Stressors & Responses

InfantsSeparation From Family

Lack of StimulationUnfamiliar People, Places, and Sounds

Lack of Routine and RitualsActing Younger Than They Are

Difficulty Bonding with CaregiverAnxietyStress

ToddlersFear of Injury & Pain

Acting Younger Than They AreAgression

UncooperativenessClinging

Verbal and Physical ProtestsTemper Tantrums

Frightening Fantasies

AdolescentsDependence on Adults

Separation From Family Members and PeersLoss of Privacy and IndependenceBody Image and Sexuality Concerns

DepressionDenial and Hostility

PreschoolersFear of Loss of Control

Thinking Objects Have Personalities Thinking of the Hospital as Punishment

AngerCrying

Sleeping and Eating ProblemsActing Younger Than They Are

Aggression

School-AgersSeparation From Family

Loss of Mastery and ControlSeparation From Peers

Fear of Bodily Injury and PainNot Cooperating

DepressionFrustration

Displaced Anger

Every child reacts differently to the stress that hospitalization may bring. Below are some common stressors and responses for each developmental stage:

Comfort is KeyComfort Items

Most hospitals allow patients and families to bring comfort items from home to make the hospital feel a little bit less like a hospital and more like home. If your child or adolescent has a toy, stuffedanimal, or blanket that makes him or her feel comforted, ask a healthcare professional to make sure it is okay and then bring that item along with you. Your child or adolescent will be thankful to have something familiar to hold.

Making the Space More Comfortable Encourage and help your child to make the space his or her own! If you know you will be in the same room for more than just a day or two, decorate the room to give your child or adolescent ownership of the space. Post pictures around the room of your child, family, friends, favorite characters, or whatever would make your child feel more comfortable. By encouraging your child to personalize this space, you are also giving your child an opportunity for self-expression. In addition, you are allowing the healthcare team to see more of who your child is outside of the hospital walls.

Positions of Comfort Ask your child life specialist to show you some options for positions of comfort. These positions allow you, as your child’s caregiver, to assist in procedures in an active and positive way by providing a secure and comfortable position for your child to be held in. Using these positions of comfort, or comfort holds, will allow your child to feel more in control of the situation.

For example, during an I.V. start or blood draw, allow your child to sit in your lap, either facing forwards or facing to the side. Your child can extend one arm towards the nurse. If your child wishes to be distracted, you can read an interactivebook or play a game with your child.

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Being Honest with Your Child

Anxiety can be contagious.

You have likely established a strong relationship of trust with your child. When you are in the hospital, sometimes it can become difficult to discuss what procedures or outcomes are ahead. Many caregivers have the instinct to protect their child by hiding bad news. However, it is extremely important for you to honor this trusting relationship by being truthful in a developmentally appropriate way. By telling the truth, you are helping your child adjust to the situation at hand. If you need help telling your child what is happening, ask your child life specialist for

some tips and support.

It is often true that the more calm and confident a caregiver is, the more calm and confident the child will be. Your child or adolescent will look to you to know how to feel. If you are stressed, your child or adolescent may pick up on that and become stressed, too. It is important to convey a message of confidence to your child. Try to keep a positive attitude even if things get scary and ask for

breaks when you need to have a little time away from your child.

Your child will match your emotions.

Why is it important to be truthful?

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Helping Your Child CopeDistraction

Distraction can be an effective coping technique for many children when facing difficult procedures. Fortunately for your child, you can be there to distract them. Talk to your child life specialist about the best ways you might do this. Perhaps an interactive game on a tablet or smart phone will work best for your child. Other children are best distracted by blowing

bubbles or looking at I Spy books.

Emotional Expression You are the perfect person to encourage emotional expression from your child or adolescent. Be available to listen to your child’s fears or concerns. Sometimes, it is difficult to express feelings using words. In such cases, your child might do best by expressing his or her emotions through play or creative activities. Be open to the

variety of ways that children and adolescents express their feelings.

Developmentally Appropriate Education Learning about the hospital, what might happen in the hospital, and facts about your child’s condition is a great way for your child to feel more in control over his or her situation. Talk to your child life specialist about ways to speak about your child’s hospitalization so that your child or adolescent will understand. For everything confusing a doctor may say, there is

an understandable way to explain it!

Hospital Term It’s Not... It is...

I.V. Poison Ivy A medicine straw

Dressing change Changing clothes Putting on a new bandage

Leads Taking you somewhere Stickers on your chest

Urine “You’re in!” Pee

Stretcher Stretching your body A bed on wheels

Move to the floor Lying on the floor Moving to a different level of the hospital

Maintaining “Normal”

Oftentimes, it becomes difficult for caregivers to enforce the same rules in the hospital that they have at home. However, children in a hospital setting need limits and consistency just as they do outside of the hospital walls. It is important to stick to these same rules and boundaries. Not only does this help you as a caregiver, but it also helps your child in a way he or she will likely be unable to understand at this time. Take the time to explain your rules as well as any additional hospital rules that may apply to your child. Continue to use appropriate discipline techniques, like encouraging a child to reflect on his or her choices and think about what might be a better option next time. When options are limited, consider giving your child limited but positive choices in order to give your child some control. For example, you might say, “We can play with play dough here in your room or go for a walk around the hospital. It’s your choice!”

What are some things at home that you do that make you feel like a caregiver? Find ways to do those same things, as often as possible, here in the hospital. Maintain routines when you can. For example, if your child has a typical time that he or she naps or eats dinner, strive to make those same times work here. Think of what your child might be doing if he or she weren’t here in the hospital. What does “play” look like for your child? Make sure that your child is still able to do those same play activities as often as possible.

Not only is play essential in promoting normal development, but it also allows for the expression of feelings, decreases anxiety, and increases a child’s sense of control!

Keep up with rules and boundaries.

What would you do if you weren’t here?

Maintaining normalcy in the hospital setting is an important way to help promote typical development for your child. Keeping things as normal as possible will also likely help your child cope with hospitalization. Below are some ways you can help.

Siblings Your child’s hospitalization may have a significant impact on his or her siblings. A variety of reactions can take place including guilt, fear, worry, anger, and other emotions. Children under the age of seven are often most vulnerable and may believe that they did something to cause their sibling’s hospitalization or illness. Other children in the family may feel guilty for being healthy or may be fearful of getting sick or hospitalized themselves. Additionally, it is often difficult for well siblings to be away from their ill siblings and any family members who are with their sibling in the hospital. Take time to show your other children that they are still loved and cared for. Coordinate visits when possible so that your other children can see where their loved one is. Your other children may also want to help their ill sibling in some way. Allow opportunities for them to be involved. For example, you may ask if they would like to draw pictures for their ill sibling to hang in their hospital room. A child life specialist may be able to assist you in explaining your child’s hospitalization in a way that will make sense to your other children.

FEAR ANGER

WORRYGUILT

FAMILYFAMILY fam•uh•lee nounthe people who know you the best and love you the most

Taking Care of Yourself

You can’t pour froman empty cup.

Caregiving for a child in the hospital can be very draining. As a result, you may find it difficult to prioritize taking care of yourself throughout this time. However, you cannot let your own self care fall to the way side! Make sure that you are taking breaks in order to promote your own well being. In turn, you will be better able to care for your child or adolescent in the hospital. A majority of hospitals have a family lounge, library, or outdoor area where you can go to get a moment to yourself or breath of fresh air. Whether you exercise, write, draw, paint, pray, or read, find an activity that allows you to relax. Make time for those activities in order to address your own needs. In addition to showing kindness to your child, you must also be kind to yourself! When in doubt, take the time to slow down and simply breathe. By taking slow, deep breaths, you can calm yourself down and lower stress levels. Lastly, watch out for warning signs of depression like an overall loss of energy, changes in sleep patterns, weight changes, and loss of interest in activities that were once enjoyable to you. Seek professional help should these symptoms become present in yourself or a loved one.

Take care of yourself first.

Questions for the Healthcare Team

Have you ever thought of questions and then forgotten them as soon as you had the chance to ask? These pages are a place where you can write down your questions for the

healthcare team as you think of them. Below are some examples of questions you might ask:

How will this condition impact my child academically or socially?How long will this condition last?

What does treatment consist of? Are there any side effects of this condition or of the treatment?

About how long should we expect to be here in the hospital?What do I need to know to take care of my child with this condition?

Questions & Notes

About This Guidebook

My name is Katie Waser and I am a Master of Science Student at The University of Georgia obtaining my degree in Human Development and Family Science with an emphasis in Child Life in August 2016.

Upon becoming a Certified Child Life Specialist, I hope to practice child life in a pediatric hospital setting. Research indicates that caregivers may face confusion and role ambiguity when facing a child’s hospitalization. I have put together this unique guidebook after exploring what child life specialists suggest might be helpful for caregivers to know going into a child’s hospitalization.

It is my hope that it provides you with some comfort, guidance, and empowerment throughout this experience.

April 2016