4542/3500/7-11
Tools to Help Children When a Sibling Is Sick
Dear Families, Having a child in the hospital can be extremely stressful for a family. Having to care for a child in the hospital while trying to care for other children who are at home can complicate matters. It can be difficult to be separated from your other children, who are experiencing their own stress about the situation. Children have many questions about what they see and experience in the hospital while their brother or sister is receiving care. At the same time, they may be dealing with how the hospitalization is affecting their own lives. They will be hearing new words for medical terms, procedures and medicines, all of which can cause anxiety and confusion. As a parent, you may find that you need some help explaining things to your child in a way they can understand or that you need some advice on how to help them navigate their own emotional reaction to having a sick brother or sister. It is important to remember that you are not alone, and there are many people that are able to support you and your family through this journey. This book was written as a resource for parents on how to help support your children in coping with a sibling’s diagnosis, both inside and outside of the hospital. We hope that you will find Brothers and Sisters: Tools to Help Children When a Sibling Is Sick a useful resource to help your children have a better understanding of the experience your family is facing.
Sincerely, The Family Consultants at The Children’s Hospital of Philadelphia
Table of Contents 01
Developmental Concerns for Siblings
02
Common Questions Children Ask
03
Things Parents Wonder
04
Bridging the Gap
05
Coming Home
06
Glossary
07
Helpful Resources
CHAPTER
CHAPTER
CHAPTER
CHAPTER
CHAPTER
CHAPTER
CHAPTER
PAGES 4-11 An overview of the challenges children face at different stages of development and some solutions to make this difficult time a little easier.
PAGES 12-17 Questions children might have about a sibling’s hospitalization/illness and suggestions for answering them.
PAGES 18-21 Advice for parents struggling to navigate their other childrens’ concerns and their home life during a child’s hospitalization/illness.
PAGES 22-23 Ways siblings can maintain communication to help bridge the gap between home and hospital.
PAGES 24-25 Changes and challenges when a child is being discharged from the hospital.
PAGES 26-31 Common hospital/medical terms, explained in ways that kids can more easily understand.
PAGES 32-35 Books to help kids cope when their sibling is hospitalized/ill.
3
01
Developmental Concerns for Siblings When a sibling goes to the hospital, children can have many different emotions as they are faced with new and, oftentimes, confusing experiences. While all children grow and develop in their own unique ways, the following section contains an overview of the challenges children may face at different developmental levels. In addition, you will find some tips to help make your job as a parent a little easier during this difficult time.
Infancy (0-1 year) Key Developmental Milestones n
Developing a sense of trust that needs will be met
n
Developing a secure attachment to parents/caregivers
n
Learning occurs through sight, touch and sound
n
Exploration of physical self and environment
n
Cause and effect learning begins
Common Hospital Challenges for Siblings n
Separation; parent/caregiver bonding
n
Lack of stimulation
n
Loss of developed trust between parent and child; multiple caregivers
n
Loss/lack of routine
Typical Behaviors and Common Reactions n
Fussiness due to inconsistent routine
n
Changes in eating/sleeping habits
Ways to Help n
Encourage consistent caregivers in hospital and other care settings
n
Maintain infant-directed schedule/routine
brothers + sisters | Developmental Concerns for Siblings
5
Toddlers (1-3 years) Key Developmental Milestones n
Expressive skills begin to increase, but understanding is limited
n
Believe the world is focused primarily on them
n
Developing autonomy and a desire to do things for themselves
n
Beginning to master and grow motor and language skills
n
Learn through experience
n
Fearful when family is not around; “Stranger Anxiety�
n
Easily frustrated
Common Hospital Challenges for Siblings n
Separation anxiety
n
nable to ask questions about sibling’s hospital experience and the reasoning behind tests, U procedures and physical changes, so may be confused
n
Loss of routines and rituals
Typical Behaviors and Common Reactions n
Regression, including loss of newly learned skills (for example, potty training)
n
Uncooperative
n
Temper tantrums and resistance
n
Aggression (hitting, biting, kicking, etc.)
Ways to Help
6
n
Offer simple explanations in language they are familiar with (e.g., boo-boo or owie)
n
Repeat explanations, and know that they might ask the same questions over and over
n
Maintain the limits and discipline you provide on a normal basis
n
Encourage activities to promote independence, and offer realistic choices when possible
n
eep their regular schedule and routine as close to normal as possible (bedtime, nap time, K familiar caregivers)
Preschool Age (3-6 years) Key Developmental Milestones n
Imitates adults and playmates
n
Objects to major changes in routine
n
Spontaneously shows affection with others
n
Understands mine/his/hers
n
Engages in pretend play
n
Increased imagination and magical thinking
Common Hospital Challenges for Siblings n
Separation
n
Loss of control
n
Fear of not knowing what will happen to sibling
n
Belief that they caused illness
n
Loss of routine at home
n
annot fully understand sibling’s illness or disability; may make up details C about things they don’t fully understand
Typical Behaviors and Common Reactions n
Acting out
n
Aggression
n
Regression in behaviors
n
Fear of being far from family; clinginess
Ways to Help n
Identify specific times to spend with them at home
n
From time to time, put their needs first
n
Talk to them about sibling in simple words they can understand
n
Reassure them it is not their fault that their sibling is in the hospital
n
Encourage questions and provide simple, concrete, honest answers
n
Ask what they already know and address any misconceptions
brothers + sisters | Developmental Concerns for Siblings
7
School Age (6-13 years) Key Developmental Milestones n
Increased independence
n
Common fears include failure, family problems, death and rejection
n
Can be self-conscious
n
Desire to please adults
n
Ability to understand a sequence of events
n
Beginning to understand the finality of death
n
Can talk through problems to solve them
Common Hospital Challenges for Siblings n
Worry about their sibling
n
Scared they will lose their sibling
n
Resentful of having to talk about and alter their own life/routine for their sibling
n
Jealous of special attention sibling is receiving
n
Embarrassed about sibling’s or family’s differences versus their peers
n
Feeling guilty about having negative emotions about hospitalized sibling
Typical Behaviors and Common Reactions n
Can become withdrawn from family and friends
n
Clinginess
n
Denial
n
Uncooperative attitude
n
Conflicting feelings about sibling
n
Projecting personal feelings on others around them
Ways to Help n
Find ways to be involved in child’s specific activities (sports and other school events)
n
Encourage and allow child to ask questions about hospital/illness
n
Acknowledge and support their feelings
n
Give child a role and tasks to do to give them control (e.g., decorate sibling’s room)
n
Include child in planning events (e.g., welcome home party)
brothers + sisters | Developmental Concerns for Siblings
9
Adolescents (13-18 years) Key Developmental Milestones n
Working on establishing personal identity
n
Can think abstractly
n
Naturally seeking to separate from parents and family and gain independence
n
Increased dependence on peers and social groups
Common Hospital Challenges for Siblings n
Separation from family and peers
n
Fear of identity loss (e.g., role as big brother/sister)
n
Concerns about stress on family; aware of monetary strain
n
Insecure about family being different from peer group
n
Can feel as though privacy is violated
n
Loss of social support
n
Often called upon to meet increased caregiving demands
Typical Behaviors and Common Reactions n
Wanting to be protective and caring; increased maturity
n
an become uncooperative, withdrawn, anxious, depressed, sarcastic, have mood swings and be in C denial about their sibling
n
Feelings of anger and frustration
n
May develop adultlike coping skills
n
Resents increased attention sibling is getting, but has a better understanding of this necessity
Ways to Help
10
n
I nformation and preparation will lessen fears and anxiety while also enhancing coping skills; encourage education
n
Listen to adolescent’s concerns, answer questions and involve them in the decision-making team
n
Encourage peer activities
n
Provide privacy, when possible
n
Respect independence
n
Encourage expression
02
Common Questions Children Ask As children struggle with the hospitalization of their sibling, they often develop questions to try to understand and cope with the changes going on around them and the emotions they are feeling. Following are some common questions that children might have about their sibling’s hospitalization/illness and suggested ways for answering them. Every family situation is different, so feel free to contact your child life specialist for additional support.
When is my brother/sister coming home from the hospital? Explain that their sibling will come home as soon as the doctors and nurses decide that he/she is well enough. Children need age-appropriate, accurate information about what is/will be going on at the hospital. Try to include them in hospital-related conversations, whenever appropriate.
What can I do to make my brother/sister get better? It is important to explain to your children that just as it was not their fault that their sibling got sick, there is also nothing they can do that will make them sicker or all better. The doctors’ and nurses’ job is to help their sibling get better, and their job is to help cheer their sibling up while they are not feeling well. Check out Chapter 4 for activities children can do to feel like they are helping their ill sibling.
What will the hospital do to take care of my brother/sister? Children are often curious about why their brother/sister has to stay at the hospital and what exactly goes on there. Reassure your children that nurses and doctors go to school to learn how to help kids who are sick. If a child understands why their sibling is sick, explain to them in simple terms what the nurses and doctors are doing to help, for example, “The nurses will be giving them medicine to help their ____.” You can also explain that the nurses and doctors might take special pictures like X-rays or MRIs.
What does my brother/sister do all day at the hospital? Many children worry about how their sibling’s basic needs like food, clothing, sleeping arrangements and playing are met. Tell them how their sibling orders meals on the phone and they are brought to their room on a tray, and that mom/dad go to the cafeteria to eat. If it is a long-term hospitalization during the school year, their sibling may also be receiving school services with a teacher. When some children are sick in the hospital, they need extra rest to feel better. The doctors and nurses might give their sibling special medicine to help his/her body rest.
Why does my brother/sister have to be in the hospital? Communication is a key part of establishing trust with your children and helping them to feel like an important part of the family. Be honest about why their sibling is in the hospital, but use simple terms that they can understand. You can explain the situation using language such as, “Your brother/sister is in the hospital because their _____ (body part) is sick. The doctors and nurses at the hospital have medicines and machines to help make him/her better.”
brothers + sisters | Common Questions Children Ask
13
Why do you (parents) have to go to the hospital? Explain to children that just as when they don’t feel well, they want mommy and daddy around, so does their sibling. Let them know that you are spending time at the hospital to help the doctors and nurses take care of their sibling.
Can I sleep over at the hospital, too? Can I visit? Only moms and dads (or other caregivers) can spend the night at the hospital. Explain that there is not enough space in the room for everybody in the family to spend the night, and that your child can sleep in their own bed to continue their normal routine. Children are allowed to visit during the day, but it is always best to give them the option of whether they would like to visit. If they decide to visit, prepare them for what they can expect to see and hear using honest, age-appropriate words, especially if their sibling looks or acts differently than they normally do. For additional support, consult a child life specialist before the visit. Sometimes children become bored during their visits to the hospital, so encourage them to bring a favorite activity from home and check with the Child Life staff about how children are included in activities on the unit and throughout the hospital. Younger children can become restless during prolonged visits so, if possible, try to have arrangements for them to go home if needed. If a child is unable to visit their sibling, encourage them to talk or text on the phone, email, or send a get-well card from home. Seek out your child life specialist for additional activities to help keep siblings connected.
Who will take care of me while you’re at the hospital? Reassure children by letting them know that while you are at the hospital with their sibling, another responsible adult they trust will be there to make sure they’re taken care of. Try to stick to your child’s normal routine such as naps, meals and bedtime, whether it is you or another caregiver with them.
Will I catch what my brother/sister has? Children can often be very egocentric and, while they love their sibling, the hospitalization could cause them to be concerned for their own well-being. Make sure to explain in simple terms why their sibling is in the hospital and that it is not the kind of sick that they or you could catch. Siblings may also be concerned that if they get “sick” with a cold or another minor illness that they might also have to go to the hospital. It is important to explain why their brother or sister is sick and how their illness is different than their typical cold or boo-boo.
14
What is all that stuff in my brother’s/sister’s room? Who are all these people? The hospital can often be an overwhelming environment for children. It’s important to prepare your children to visit their sibling in the hospital and the medical equipment they will see in the room. It can be helpful to explain to children that doctors and nurses use many types of medicines and machines to help kids in the hospital (e.g., “There is a special computer next to your brother’s/sister’s bed called a monitor. The nurses use the monitor to watch how his/her body is doing. The monitor makes noises to help the nurses know how to best take care of them.”). If you have questions about how to explain the medical equipment, see your child life specialist.
brothers + sisters | Common Questions Children Ask
15
Do you care about my brother/sister more than you care about me? Assure your child that you love them and their sibling equally and that you are spending extra time at the hospital so that their sibling feels less scared and less alone while they are there. To help your child feel like they are a priority, plan a special activity with just them or establish a small routine/ritual that you can maintain even during their sibling’s hospitalization.
Is my brother/sister going to die? Usually, when children bring a topic such as this up it is because it is something they are worried about. Your child may have had a relative or seen someone on TV who went to the hospital and died. If your child is facing a life-threatening illness, this may be an opportunity to discuss the situation and help your children understand and ask questions about what is going on. You can use language such as, “We all hope that your brother/sister will get better but his/her body is very, very sick right now.” If their sibling is expected to recover, help to reassure your children by letting them know what the doctors and nurses are doing to help their sibling and when/how they are going to come home.
Remember ... You don’t have to have all the answers to the questions your children ask. If you don’t know the answer or are unsure of how to answer their questions in a way they can understand, you can use language such as, “That’s a great question. I’m not sure what the answer is but let’s write it down and we can be sure to ask someone at the hospital.” This gives children a sense that they will get the answer and gives you an opportunity to ask the medical staff or child life specialist for ways to answer the difficult questions that children can pose. The most important thing is that your children feel as though they can come to you with any questions or feelings they are having about their sibling being sick and that you are open to having those discussions with them.
brothers + sisters | Common Questions Children Ask
17
03
Things Parents Wonder As parents work to manage the responsibility and stress that comes with the hospitalization of a child, they also are faced with the difficult task of helping their other children make sense of what is going on around them. Following is advice for parents struggling to navigate childrens’ concerns and their home life during this trying time. As always, your child life specialist is available for additional support.
How do I explain to my children at home why their sibling is in the hospital? n
Use honest and basic explanations (see Chapter 6 for simple definitions of hospital terms).
n
ften, it can be helpful to start the conversation by asking children what they already know. O This can give you a starting point for determining the amount and type of information your child needs.
n
Provide examples your child can relate to with words they understand: Example: Your brother’s/sister’s heart is sick and he/she is at the hospital so they can fix it and help him/her grow big and strong.
n
ontact your child life specialist to help you with more examples specific to your child’s C diagnosis or medical status and for help with age-appropriate explanations.
Is it okay for my well children to spend time at the hospital? n
es. Children are welcome to visit the hospital. Some units may have restrictions about when Y and where they can visit. If you have questions, check with your nurse or child life specialist.
n
hildren do not have to stay in their sibling’s room the whole time during their visit. In fact, C it can be helpful for children to have some time out of the patient’s room. The Child Life staff on your unit can provide you with information about how children are included in activities on the unit and throughout the hospital. Children can bring items from home to help occupy their time while they are visiting. Have them bring a backpack of activities to help keep them busy during their visit.
How do I explain the things my children will see at the hospital when they come to visit? The hospital environment can be an overwhelming and scary place for children. It is important that children are prepared for the new sights and sounds they might experience at the hospital. Each unit has a child life specialist that can help explain or prepare children for their visit to the hospital. Contact the Child Life Department to set up a date and time to meet them.
brothers + sisters | Things Parents Wonder
19
Is it okay for my children at home to see me upset? (What if I cry in front of my child?) Having a child in the hospital is a difficult time for families. Expressing emotions in front of your children is okay. It can lead to open discussions about feelings. Let them know that it is okay to cry, talk about how they feel and ask questions. It is important to let them know that you love and care about them. Remind them that they did nothing wrong to cause you to cry but that you are sad because their sibling is in the hospital. Also, give them concrete tasks they can do to feel like they are helping. For example, “Mommy is sad because she doesn’t want your brother/sister to be in the hospital, but it really helps me feel better when you give me hugs.”
When is the right time to update my children with information about what is going on in the hospital?
20
n
I t’s important to keep your children connected to one another by giving them daily updates of how their sibling is doing. Give them information that is age-appropriate and in a way that is not too overwhelming but helps them feel included.
n
I f there are major changes in your child’s medical condition or you are not sure how to explain the hospitalization, ask your child life specialist for ideas on how to update your children at home.
My child doesn’t want to talk about their sick sibling or engage with them when we’re at the hospital. I’m worried that my child does not care about them. n
is is okay; your children might not be ready to talk about/to their sibling. This could be Th due to their age or because they are confused or have questions.
n
voiding the topic or wanting to play is one way children cope when they are feeling overwhelmed A with stressful information.
n
I f/when they are ready to talk, be open and honest. Address any fears or misconceptions they may have.
How do I balance my time with my children at home and my child in the hospital? n
This is difficult for all families. Remember that children are welcome to visit.
n
eassure your children that you love them and want to spend time together as a family, but you R need to be at the hospital to help take care of their sick sibling.
n
each out to friends and family to support children. If able, try and spend individual time with R each of your children at home or schedule daily phone calls during the hospitalization.
n
ry and keep their home routines as normal as possible. It’s okay for your well children to go to T a friend’s birthday party, school events and play dates.
Do I talk to their school and tell their teacher what is happening? n
es. Be sure to let each child’s school, teachers and guidance counselor know the situation. They Y will be able to help support your child and let you know if there are any concerning reactions throughout the school day.
n
I t may be helpful to connect your child with an adult at school who knows the situation who your child can seek out during the school day if they are upset.
brothers + sisters | Things Parents Wonder
21
04
Bridging the Gap When a child is hospitalized, it is important to keep your other children involved with their care and for them to remain connected to their sibling. Following are some ways siblings can maintain communication to help bridge the gap between home and hospital.
n
Have children pick out a few of their sibling’s favorite items to bring to the hospital.
n
ave your children at home put together pictures, drawings and collages to decorate the H hospital room.
n
ake pictures at the hospital of daily activities such as eating lunch, making a craft, having school T with the teacher or making music to send home.
n
ake a scrapbook to send back and forth from the hospital and home with messages, pictures and M updates.
n
ave your children create a message notebook or note box that only the siblings can add to or read H from that they can take back and forth to the hospital.
n
ake countdown calendars in the hospital and at home if you know when your child will be sent M home.
n
S et up a TV show date where your children can watch the same program at the same time on the phone with one another and feel like they are at home watching it on the couch together.
n
se your cellphone or computer to record children singing or reading their favorite book to play U for their hospitalized sibling.
n
ave your children choose photos from home to hang in their sibling’s hospital room. Their H sibling may enjoy seeing family or pet photos and sharing them with hospital staff.
n
Make goodnight phone calls or send goodnight text messages.
n
I f your hospitalized child is unable to participate, have your children make “Tell me about your brother/sister” posters to let hospital staff know about your child’s likes and dislikes and important fun facts.
n
Create opportunities to video message, or email messages or e-cards over the Internet.
brothers + sisters | Bridging the Gap
23
05
Coming Home When your child is being discharged home from the hospital, you may be feeling a range of emotions in anticipation of this transition. While this can be an exciting time, your child and family can face a new set of challenges. It is important to acknowledge some of these changes.
Medical Care Every child has a different medical history and prognosis and will therefore have a unique set of needs at home. Your child may have new medical equipment or changes that affect their physical abilities. Children should be prepared as much as possible for the type of equipment they can expect. While it is important to remind children not to play with this equipment, education can empower them to be safely involved in care. It is important to explain the limitations this equipment may create and understand the physical activities appropriate for your child. This might require you to set boundaries (e.g., getting plenty of rest, no roughhousing, no contact sports, etc.). Additionally, medication schedules can affect activities of daily living such as mealtime, playtime or bedtime. Your child might also have a limit on the amount of time they’re able to spend outside the home, especially if home care nurses have planned visits.
Emotional Considerations It is extremely important to consider the emotional factors involved in transitioning your child from the hospital to home. Your other children may experience a variety of ever-changing emotions ranging from happiness to sadness and jealousy. Maintaining open lines of communication and providing one-on-one time, privacy or opportunities for expression are some ways you can facilitate emotional coping.
Social Support Maintaining normalcy is important for childrens’ social adjustment during the transition home. Encouraging children to attend school and participate in extracurricular activities will provide consistency. It may be beneficial to inform teachers and parents of peers about what is going on at home. This could be one way of providing a supportive foundation. Anticipate that your children are going to be approached by peers with difficult questions (e.g., “Why does your brother/sister look different now?”). It might be helpful to prepare and rehearse how to respond in these situations. As you transition your child home from the hospital it is important to consider the medical, emotional and social challenges and changes your family may face. Keep in mind that your child’s medical needs may affect the family’s activities of daily living, requiring more planning and additional time. Utilize your resources. Feel free to contact the hospital’s Social Work or Child Life departments for additional support during this phase of your child’s care plan.
brothers + sisters | Coming Home
25
06
Glossary For those unfamiliar with medical language, explaining even the most common medical terms to children can be a challenge. Following are some common terms, explained in ways that siblings of hospitalized children can easily understand.
Anesthesia (also called “sleepy medicine”): A special doctor called an anesthesiologist gives your brother/sister medicine that helps their body sleep during surgery. The medicine makes them sleep in a way that makes them not feel anything during the surgery. Art Therapist: Someone who uses art to help patients and families cope with being in the hospital. Attending: The doctor who is in charge of your brother’s/sister’s care while they are in the hospital. Blood Pressure Cuff: A fabric wrap that goes around and squeezes an arm or leg to check how the blood is moving through the body. Cardiology: Sometimes called “Cardiac,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with their hearts. There is a cardiology unit at the hospital, but these doctors can also see patients on other units. Child Activity Coordinator: The child activity coordinator will bring toys to your brother’s/ sister’s room and plan activities in the playroom. Child Life Specialist: The child life specialist will teach your brother/sister about the hospital and what the doctors and nurses will do to take care of them. If you have questions, the child life specialist can answer them and help teach you about the hospital. CT: A CT scan (also called a CAT scan) lets the doctors and nurses take special pictures of your brother’s/sister’s body that can help them decide how to best take care of them while they are in the hospital. Emergency Department: Sometimes called the “ED,” this is a part of the hospital where children go when they are sick or hurt and need help. Endocrinology: Sometimes called “Endocrine,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with the way their body does some of its jobs, such as growing. They also help kids with a disease called diabetes.
brothers + sisters | Glossary
27
Fellow: This is a doctor who is doing extra training in one part of the hospital to learn how best to care for that particular group of children. Gastroenterology: Sometimes called “GI,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with their stomachs. There is a GI unit at the hospital, but these doctors can also see patients on other units. Hematology: Sometimes called “Heme,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with their blood. Hospital: A place where people come to see a doctor when they are sick. Your brother/sister may stay at the hospital to get medicine or any extra help they need to get them feeling better. Incision: If your brother/sister needs surgery, the doctors will make a small opening called an incision to get to the part of their body that they are helping. (See: Surgery.) Isolation: During their hospital stay, your brother/sister may need to be on what is called “Isolation.” Sometimes this is also called “Contact Precautions” or “Droplet Precautions.” Isolation precautions help to prevent spreading germs. If you are visiting your brother/sister and they are on isolation precautions, you may see the doctors and nurses wearing gloves, a mask and/or a gown when they are in your brother’s/sister’s room. IV: A small plastic tube that sits right under the skin and helps give your brother/sister medicine or water while they are in the hospital. Usually, nurses will put the IV in your brother’s/sister’s hand or arm. Monitor: A computer next to your brother’s/sister’s bed or outside their room that the nurses use to watch how their body is doing. The nurses use this screen to watch their heart rate, blood pressure and pulse. The machine makes beeping noises to tell the nurses how your brother’s/sister’s body is doing. MRI: Magnetic Resonance Imaging (MRI) takes special pictures of your brother’s/sister’s body that the doctors and nurses use to help them decide how to best take care of them while they are in the hospital.
28
Music Therapist: A music therapist is someone who uses music to help patients and families cope with being in the hospital. Needle: Doctors and nurses may use a small needle to give your brother/sister medicine or take a small amount of blood while they are in the hospital. Neonatal Intensive Care Unit: Sometimes called the “NICU,� this is the part of the hospital where newborn babies go when they need help with growing and getting stronger. Nephrology: This is a group of doctors and nurses whose main job is to take care of children who need extra help with their kidneys.
brothers + sisters | Glossary
29
Neurology: Sometimes called “Neuro,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with their brains, spines or nerves. There is a neurology unit at the hospital, but these doctors can also see patients on other units. NPO: The doctors or nurses might say that your brother/sister is “NPO” during a time when they do not want them to eat or drink. Nurse Practitioner: This is a nurse who has extra training in order to help the doctors take care of your brother/sister while they are in the hospital. Oncology: Sometimes called “Onco,” this is a group of doctors and nurses whose main job is to take care of children who have a disease called cancer. Orthopaedics: Sometimes called “Ortho,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with their bones. Pediatric Intensive Care Unit: Sometimes called the “PICU,” this is part of the hospital where children go when they are very sick or very hurt and need a lot of extra help from the nurses and the doctors. Pulmonology: Sometimes called “Pulmonary,” this is a group of doctors and nurses whose main job is to take care of children who need extra help with their lungs. There is a pulmonology unit at the hospital, but these doctors can also see patients on other units.
30
Pulse Oximeter: A sticker or clip with a red light put on the finger or toe that measures how much air is in your brother’s/sister’s body. Rehabilitation: Sometimes called “Rehab,” this is a part of the hospital where kids go when they need extra help getting their bodies stronger after a serious illness or after getting hurt. Resident: This is a new doctor who works in different parts of the hospital as they are learning how best to take care of kids in the hospital. Your brother/sister will have a resident assigned to take care of them while they are in the hospital. Rounds: Every day, all the doctors on the unit and your brother’s/sister’s nurse meet to talk about how best to help your brother/sister that day. This is called “Rounds.” Social Worker: Someone who will help your brother/sister and your family get extra help if they need it. Stethoscope: Doctors and nurses use a stethoscope to listen to your brother’s/sister’s heart and lungs. Surgery: Also called “an operation.” If your brother/sister needs surgery, the doctors will give him/her “sleepy medicine” and while they are sleeping the doctors will help the part of their body that is sick or hurt. (See: Anesthesia.) Teacher: Just like in school, the hospital has teachers to make sure your brother/sister continues learning while in the hospital. Treatment Room: A room on the hospital unit where doctors and nurses provide care to children in the hospital. Urology: This is a group of doctors and nurses whose main job is to take care of children who need extra help with the parts of their bodies that help them pee. Vital Signs: A group of procedures to measure and check blood pressure, temperature, heart rate, respiratory rate and pain. The nurses will do this several times a day with your brother/sister. X-ray: A machine that takes pictures of the inside of your brother’s/sister’s body.
brothers + sisters | Glossary
31
07
Helpful Resources For those parents seeking some extra resources to help your children, here are some recommended books for siblings of children who are chronically ill or hospitalized.
“When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children” Duncan, D. Rayve Productions, 1994
Anna tells the story of her sister Molly’s hospitalization from her point of view.
“The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Special Needs” Meyer, D. Woodbine House, 2005
The thoughts and feelings of more than 80 teens about having a sibling with special needs.
“Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs” Meyer, D. Woodbine House, 1997
Children of different ages share their view of what it’s like to have a sibling with special needs.
“Living with a Brother or Sister with Special Needs: A Book for Sibs” Meyer, D. and Vadasy, P. University of Washington Press, 1996
A book for older children with siblings with special needs. Discusses many specific disabilities, and addresses common emotions and questions.
“What About Me? When Brothers and Sisters Get Sick” Peterkin, A. Magination Press, 1992
A young girl attempts to cope with her brother’s illness. Deals with the complicated feelings of a well child in such a situation.
brothers + sisters | Helpful Resources
33
Bibliography Centers for Disease Control and Prevention – Milestones www.cdc.gov/ncbddd/actearly/milestones/milestones/index.html
Kaiser Permanente: Department of Genetics – Siblings of Your Special Needs Child
www.permanente.net/homepage/kaiser/pdf/44897.pdf
University of Michigan Health System – Siblings of Kids with Special Needs www.med.umich.edu/yourchild/topics/specneed.htm
“North Carolina Cooperative Extension Service – Childhood Years Ages Six Through Twelve” Karen DeBord, Ph.D. www.ces.ncsu.edu/depts/fcs/pdfs/fcs465.pdf
“Child Life in Hospitals: Theory and Practice” Thompson, R.H. and Stanford, G. Charles C. Thomas Publisher, 1981
“Meeting Children’s Psychosocial Needs: Across the Health-Care Continuum” Judy A. Rollins, Rosemary Bolig and Carmel C. Mahan
“When Jack Fell Down … Jill Came Tumbling After: Siblings in the Web of Illness and Disability” Fleitas, J. MCN Am J Matern Child Nurs. 2000 Sep-Oct;25(5);267-73
“Say What?” A Resource for Explaining Medical Terms to Children and Families
Created by the Child Life, Education and Creative Arts Therapy Department at The Children’s Hospital of Philadelphia
The Children’s Hospital of Philadelphia Child Life, Education and Creative Arts Therapy Department www.chop.edu/childlife
34
This book was developed by the following members of the Child Life, Education and Creative Arts Therapy Department at The Children’s Hospital of Philadelphia. Ann E. Baker, B.S., CCLS Darlene Barkman, Family Consultant Lauren Cantrell, B.S., CCLS Kate M. Carpenter, M.Ed., CCLS Kathy Conaboy, Family Consultant Amelia Hayes, B.S., CCLS Kirsten Hosack, B.S., B.A. Amy Kratchman, Family Consultant Melissa Westburgh McGillen, B.S., CCLS Andrea McGinnis, B.A., CCLS Tara Monroe, B.S., CCLS Sarah Pajak, B.S., CCLS Sherry Polise, B.S., CCLS Stephanie Rogerwick, M.S., CCLS, Department Manager Jennifer Wheaton, B.A., CCLS Angela Wolf, B.A., CCLS Sue Worthington-Duffy, M.A., A.T.R.-B.C.