viernes, 8 de abril de 2016

Parents Who Have a Child With Cancer - National Cancer Institute

Parents Who Have a Child With Cancer - National Cancer Institute

National Cancer Institute

National Cancer Institute

Parents Who Have a Child with Cancer

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Families need extra support when a child is being treated for cancer.
This information can help parents, children with cancer, and siblings to cope when a child is being treated for cancer. It answers questions that both parents and children with cancer may have. Tips to help children cope with physical and emotional changes are also provided.

Talking with Your Child

As you talk with your child, begin with the knowledge that you know your child best. Your child depends on you for helpful, accurate, and truthful information. Your child will learn a lot from your tone of voice and facial expressions, so stay calm when you talk with your child. Work to be gentle, open, and honest – so your child will trust and confide in you.
The age-related suggestions below may be helpful, as you work with the health care team so your child knows what to expect during treatment, copes well with procedures, and feels supported.
If your child is less than 1 year old: Comfort your baby by holding and gently touching her. Skin to skin contact is ideal. Bring familiar items from home, such as toys or a blanket. Talk or sing to your child, since the sound of your voice is soothing. Try to keep up feeding and bedtime routines as much as possible.
If your child is 1 to 2 years old: Very young children understand things they can see and touch. Toddlers like to play, so find safe ways to let your child play. Toddlers also like to start making choices, so let your child choose a sticker or a flavor of medicine when possible. Prepare your child ahead of time if something will hurt. Not doing so may cause your child to become fearful and anxious.
If your child is 3 to 5 years old: To help your child understand his treatment better, ask the doctor if he can touch the models, machines, or supplies (tubes, bandages, or ports) ahead of time. If a procedure will hurt, prepare your child in advance. You can help to distract your child by reading a story or giving her a stuffed animal to hold.
If your child is 6 to 12 years old: School-aged children understand that medicines and treatment help them get better. They are able to cooperate with treatment but want to know what to expect. Children this age often have many questions, so be ready to answer them or to find the answers together. Relationships are important, so help your child to stay in touch with friends and family.
If your child is a teenager: Teens often focus on how cancer changes their lives—their friendships, their appearance, and their activities. They may be scared and angry about how cancer has isolated them from their friends. Look for ways to help your teen stay connected to friends. Give your teen some of the space and freedom he had before treatment and include him in treatment decisions.

Questions Parents May Have

Talk with your child’s health care team to get your questions answered. You may also find the suggestions below to be helpful:
Who should tell my child?
Many parents receive their child’s diagnosis from the doctor at the same time that their child learns of it. However, if you choose to be the one to tell your child, the doctor or nurse can help you decide what to say and how to answer her questions.
When should my child be told?
Your child should be told as soon as possible. This will help build trust between you and your child. It does not mean that your child needs to hear everything all at once.
What should I tell my child?
The information you share with your child depends on his age and what he can understand. Children of all ages need clear, simple information that makes sense to them. As much as possible, help him know what to expect by using ideas and words that he understands. Tell your child how treatment will make him feel and when something will hurt. Explain that strong medicine and treatments have helped other children.
How much should I tell my child?
Help your child to understand the basic facts about the illness, the treatment, and what to expect. It may be hard for many children to process too many details or information given too far in advance. Start with small amounts of information that your child can understand. Children often use their imaginations to make up answers to unanswered questions and may fear the worst. Answering questions honestly and having ongoing conversations can help your child. Telling untruths can cause your child to distrust you or people on their health care team.
How might my child react?
Each child is different. Some worry. Others get upset or become quiet, afraid, or defiant. Some express their feelings in words, others in actions. Some children regress to behaviors they had when they were younger. These are normal reactions to changes in life as they know it. Their schedule, the way they look and feel, and their friendships may all be changing. Expect that some days will be rough, and others will be easier. Tell your child, and find ways to show her, that you will always be there for her.
What can I do to help my child cope?
Children take cues from their parents, so being calm and hopeful can help your child. Show your love. Think about how your child and family have handled difficult times in the past. Some children feel better after talking. Others prefer to draw, write, play games, or listen to music.

Questions Children May Have

Talk with your child’s health care team about how to answer questions your child may have. You may also find these suggestions helpful:
What is cancer?
When talking about cancer with your child, start with simple words and concepts. Explain that cancer is not contagious—it’s not an illness children catch from someone or they can give to someone else. Young children may understand that they have a lump (tumor) that is making them sick or that their blood is not working the way it should. Older children may find the Types of Childhood Cancer section in the Children with Cancer: A Guide for Parents helpful.
Why did I get cancer?
Some children think they did something bad or wrong to cause the cancer. Others wonder why they got sick. Tell your child that nothing he—or anyone else—did caused the cancer, and that doctors are working to learn more about what causes cancer in children.
  • You may tell your child: I don't know. Not even doctors know exactly why one child gets cancer and another doesn't. We do know that you didn’t do anything wrong, you didn't catch it from someone, and you can’t give it to anyone.
Will I get better?
Being in the hospital or having many medical appointments can be scary for a child. Some children may know or have heard about a person who has died from cancer. Your child may wonder if she will get better.
  • You may tell your child: Cancer is a serious illness, and your doctors and nurses are giving you treatments that have helped other children. We are going to do whatever we can to help you get better. Let's talk with your doctor and nurse to learn more.
How will I feel during treatment?
Your child may wonder how he may feel during treatment. Children with cancer often see others who have lost their hair or are very sick. Talk with the nurse or social worker to learn how your child’s treatment may affect how your child looks and feels.
  • You may tell your child: Even when two children have the same type of cancer, what happens to one child may not happen to the other one. Your doctors and I will talk with you and explain what we know and what to expect. We will all work together to help you feel as good as possible during treatment.

Helping Your Child to Cope

Treatment brings many changes to a child’s life and outlook. You can help your child by letting her live as normal a life as possible. Talk with the health care team to learn what changes your child may experience so you can prepare for them in advance.

Changes in Appearance

Children can be sensitive about how they look and how others respond to them. Here are some ways to help your child:
  • Prepare for hair loss
    If treatment will cause your child's hair to fall out, let your child pick out a fun cap, scarf, and/or wig ahead of time.
  • Be aware of weight and other physical changes
    Some treatments may cause weight loss and others may cause weight gain. Get advice from a dietician so you know what to expect and can help your child prepare for and cope with physical changes.
  • Be creative
    You and your child may shop for outfits that your child likes. Sometimes a cool t-shirt or fun hat may help to lift your child's spirits.
  • Help your child know how to respond
    Sometimes people will stare, mistake your child's gender, or ask personal questions. Talk with your child and come up with an approach that works. Your child may choose to respond or to ignore comments.

Changes in Friendships

Your child's friendships are tested and may change during a long and serious illness. Sometimes it may seem as though your child's old friends are no longer “there for them” or that they don't care anymore. It may help if your child takes the first step and reaches out to friends. The good news is that your child may make new friends through this experience. Here are some steps you can take with your child:
  • Help your child stay in touch with friends
    You can encourage and help your child to connect with friends through texts, e-mails, video chats, phone calls, and/or social media sites.
  • Get tips and advice
    A social worker or child life specialist can help your child think through what they would like to share with friends. If possible and when your child is up to it, friends may be able to visit.

Changes in Feelings

Although over time many children with cancer cope well, your child may feel anxious, sad, stressed, scared, or become withdrawn from time to time. Talk with your child about what she is feeling and help her find ways to cope. You and your child can also meet with a social worker, child life specialist, or psychologist about feelings that don’t have easy solutions or seem to be getting worse over time. Try these tips to help your child cope with difficult emotions:
  • Find ways to distract or entertain your child
    Playing video games or watching movies can help your child to relax. Integrative medicine practices such as muscle relaxation, guided imagery, and biofeedback may also help. Learn more about integrative medicine approaches in the Practices That Help Children section of Children with Cancer: A Guide for Parents.
  • Stay calm but do not hide your feelingsYour child can feel your emotions. If you often feel sad or anxious, talk with your child's health care team and your doctor about the best way to manage these emotions. However, if you often hide your feelings, your child may also hide their feelings from you.
  • Get help if you see signs of depression in your child
    It is normal for your child to feel down or sad sometimes, but if these feelings last for too long and happen on most days, they may be a sign of depression. Talk with the doctor about emotional changes you notice in your child.

Changes in Schedule

Your child may spend more time at the hospital and less time at school during treatment. Here are some ways to help your child cope with long stays at the hospital and time away from school.
  • Hospital stays
    Being in the hospital can be difficult for anyone, especially children. Photos, posters, games, and music can help cheer up your child. And if sports are off-limits, learn about other activities such as music, games, or writing that may capture your child's interest.
  • Missing school
    Most children with cancer miss school during treatment. Some children are able to attend from time to time, whereas others need to take a leave of absence. Here are some ways to get the academic support your child needs during treatment:
    • Meet with your child's doctor to find out how treatment may affect your child's energy level and ability to do schoolwork. Ask the doctor to write a letter to your child’s teachers that describes your child’s medical situation, limitations, and how much school your child is likely to miss.
    • Keep your child's teachers updated. Tell your child's teachers and principal about your child's medical situation. Share the letter from your child's doctor. Learn what schoolwork your child will miss and ways for your child to keep up, as they are able.
    • Learn about assistance from the hospital and your child's school. Some hospitals have education coordinators, and others have nurses who can tell you about education-related resources and assistance. Ask about an individualized education plan (IEP) for your child.
Read about more ways to support your child in the Helping Your Child to Cope section ofChildren with Cancer: A Guide for Parents.

Supporting Brothers and Sisters

At times I felt like this situation was harder on our daughter, Aaron’s sister, than it was on us. We struggled to have the energy and time for her. I felt guilty. I realize now that there were conversations we could have had, and things we could have done, that would have made a big difference in her life.
As a parent, you want to be there for all of your children, but this can be hard when one of your children is being treated for cancer. You may notice that your other children are having a difficult time but are not sure of what to do. These suggestions have helped others:
  • Listen to and talk with your other childrenSet aside some time every day, even if it’s just a few minutes, to spend with your other children. Ask how they are feeling, even if you do not have an easy solution. It’s still important to connect with them and to listen to them.
  • Keep them informed and involvedTalk with your other children about their sibling’s cancer and tell them what to expect during treatment. If possible, find ways to include them in visits to the hospital. If you are far from home, connect through e-mail, texts, and calls.
  • Keep things as normal as you canArrange to keep your other children involved in school-related events and other activities that are important to them. Ask key people in your family’s life to give siblings extra support. Most people want to help and will appreciate being asked.
For more information, refer to this guide: When your Brother or Sister Has Cancer: A Guide for Teens or to the Helping Brothers and Sisters section of Children with Cancer: A Guide for Parents.

Tips to Help Parents Cope

Being strong meant learning to rely on others. I found that friends wanted to be there for our family, I just needed to ask. I also met with a counselor who gave me insights and listened in ways that friends could not.

Work to Keep Relationships Strong

Relationships are strained and under pressure when a child has cancer. However, many marriages grow stronger during this time. Working to keep your marriage strong can also help your children. Here’s what other parents said helped:
  • Keep lines of communication openTalk about how you each deal best with stress. Make time to connect, even when time is limited.
  • Remember that no two people cope the same wayCouples often have different coping strategies. If your spouse or partner does not seem as distraught as you, it does not mean he or she is suffering any less than you are.
  • Make timeEven a quick call, text message, or handwritten note to your spouse and other children can go a long way to making their day a good one.
  • Keeping Your Marriage Together When Your Child Fights for Life developed by Arkansas Children’s Hospital offers more insights and suggestions for parents.

Get Support

Research shows what you most likely already know—that help from others strengthens and encourages your child and your family. Let others help during this difficult time. Family and friends may want to assist, but might not know what you need. You may want to:
  • Find an easy way to update family and friendsYou may want to use a social media site to update people and organize help from people in your community.
  • Tell people how they can helpKeep a list of things that others can do for your family. For example, people can cook, clean, shop, or drive siblings to their activities.
  • Join a support groupSome groups meet in person, whereas others meet online. Many parents benefit from the experiences and information shared by other parents.
  • Seek professional helpIf you are not sleeping well or are depressed, talk with your primary care doctor or people on your child’s health care team. Ask them to recommend a mental health specialist such as a psychiatrist, psychologist, counselor, or social worker.

Make Time to Renew Your Mind and Body

It can be tempting to put your own needs on hold and to focus solely on your child. But it is important to take time for yourself so you have the energy to care for your child. Here are tips to get you started:
  • Find ways to relax and lower stressSome parents try something new, such as a yoga or deep-breathing class at the hospital. Others are refreshed by being outdoors, even for short periods. Whatever the method or place, find one that feels peaceful to you.
  • Stay physically active to sleep better and stay calmTry to walk, jog, go to the gym, or follow an exercise DVD. If it’s hard to stay physically active at the hospital, try walking up and down the stairs or around the hospital or unit.
  • Fill waiting timePick a few activities that you enjoy and can do in your child’s room, such as playing a game, reading a book or magazine, writing, or listening to music.
Get more suggestions in the Finding Ways to Cope and Stay Strong section of Children with Cancer: A Guide for Parents and in the Family and Friends section of our site.

Working with Your Child's Health Care Team

These suggestions can help you and your child to establish strong and effective relationships with your child’s health care team.
  • Build strong partnershipsGive and expect to receive respect from the people on your child’s health care team. Open and honest communication will also make it easier for you to ask questions, discuss options, and feel confident that your child is in good hands.
  • Take advantage of the many specialists who can help your childWork with them to help your child learn about cancer, how it will be treated, prepare for tests, manage side effects, and cope.
  • If you get information online, make sure the source is credibleIt’s important to get accurate information that you understand and can use to make decisions. Share what you find with the health care team to confirm that it applies to your child.
  • Make sure you understand what your child’s health care team tells youSpeak up when something is confusing or unclear, especially when decisions need to be made. Ask to see pictures or videos to help understand new medical information.
  • Keep your child’s pediatrician updatedAsk for updates to be sent to your child’s regular pediatrician.

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