Humanized Care for Families
Humanized Care Programs for Your Child's Healthy Recovery
You and your child are to take a life changing journey, whether you are in your home country or traveling abroad, to invest in a happier and healthier life for your child. Your continued support will be most important for your child’s recovery, as the healthcare team welcomes your knowledge and understanding of and communication about your child. We hope these guidelines make everything go more smoothly because we know that your whole family wants to help and support you. We offer this information in writing to any hospital or parent who requests it. In addition, we offer staff training so that a particular team in a hospital can provide a Humanized Care Program for children and families, as well as self-care for the staff.
PREPARATION FOR SURGERY: FAMILY GUIDELINES
- You will stay with your child before and after surgery, in the intake and discharge units of the hospital. Depending on the hospital, you may be able to spend time with your child in the Intensive Care Unit (ICU) directly after surgery.
- Ask the doctor or nurse about pain medicine, sleeping and eating needs before and after surgery, play with other children after surgery. Play before and after can bring joy and relief to both of you.
- Explain to your child what will be happening depending on his/her age and that the doctor has fixed the hearts of many children before.
- “Medical Play” is a way of playing with medical tools that will help your child feel more at ease with procedures such as injections, ex-rays, open mouth exams, stethoscopes to hear his/her heartbeat, thermometer, blood pressure kit, drink medicine with a cup. You can discuss this with the staff before surgery.
- Ages birth to 3 years of age: Bring a pacifier, favorite stuffed animal, bottle and nipple, cup and blanket to the hospital. Tell the older child in a calm voice the day before surgery that they will feel better. Let your child ask questions, ask which toy or shirt they want to bring, engage in some “medical play”.
- Ages 3 to 5: Tell your child 3 days before surgery that the hospital is a safe place where lots of kids are helped by the doctors and nurses. Use the following words to describe some of the experiences your child will have:
- A stretcher is a “bed with wheels”
- A blood pressure cuff is an “arm hug”
- Anesthesia is “sleepy air”- they will go to sleep and wake up
- The first room is the “Sleepy air room”
- The Recovery room is the “Wake-up Room”
- Injections are a “little stick to make you feel better”
- Ages 5 and 1/2 to 12: Tell your child a week ahead of time about the surgery, hospital, doctors, and nurses. Answer their questions honestly and simply. Give facts. Their fears may be worse than what is real, which is normal. Ask them if they are afraid and what they are afraid of. Prepare them for stitches and bandages. If they are afraid of knives or needles, tell them that the problem will be fixed, and they will be helped to not feel pain with medicines. Ask them what they would like to take to the hospital with them.
- Ages 12 and 1/2 to 18: Teens want to make their own decisions and ask questions. Answer their questions honestly. They may be shy, or afraid to say they are in pain or shy about being touched. Tell them these are all normal and that the doctors and nurses are the only ones to touch them in order to see how they are doing. Tell them that they can ask any questions they want of the doctors and nurses.
TALKING ABOUT FEELINGS:
Your child may be worried about what will happen to him/her and not be able to say it out loud. They may want to appear brave and not worry you. Tell them what they can understand that they will be taken care of, that you will be there when they wake up, and that they will have medicine for pain. If child feels she/she caused their heart problem or feels guilty that they are being punished, tell him/her that this a medical problem and is not because of anything they did, that the operation is to FIX, not a punishment, and that everyone is working together to help them heal and have a better life. Tell them that any feelings they have are normal and all kids feel this way.
DAY BEFORE AND DAY OF SURGERY:
- Day before:If you can, visit the hospital with your child and bring a toy and cuddle with him/her a lot.
- Day of surgery- bring a toy, books, pacifier. You will be taken up to the “wakeup” room or intake room. Bring a change of clothes for you, your cell phone and something to relax with. Your child will be given medicines for comfort.
- In the morning you will be escorted to the Operating Room waiting area where the doctor will sedate your child and the nurse will take your child in for surgery. This separation might be stressful for both of you, and it is important that you can remain calm and tell your child you will see them soon.
- Be prepared to stay as long as you can in the waiting area, and you will be visited by the social worker, psychologist or Humanized Care worker. The doctor will visit to tell you how things are going.
- Your child will be taken first to the “wakeup” or recovery room where the doctors and nurses will prepare him/her for the ICU and provide special care there to help him wake up and breathe comfortably. In some hospitals you can stay with your child in the ICU, depending on the medical situation and Covid health requirements.
- In the ICU, your child may be asleep and sedated for a while but can hear you talk to him/her and feel you touch them. Wires and tubes maybe connected to your child for nutrition and pain.
- If you are there when your child wakes up, be calm and smiling to reassure him/her that all is good. Your child will take cues from you and your joy in seeing him/her will be very important.
- If you have toys or books, you can bring them to the step-down unit which is the unit to prepare for discharge home. Ask the doctors and nurses for any information you may need for your child’s recovery, including wound care, eating, sleeping, socializing and activity after arrival home. Inform your immediate family and relatives of any special care your child needs.
STRESS REDUCTION FOR CHILDREN AND FAMILIES:
It is normal to feel stressed and uncomfortable during any stage of the surgery process. Separation from family, medical procedures, strange environments, and new medical teams can make a child feel unsafe and unprotected, and a parent anxious about his/her child’s care. Below are typical events that raise stress, typical emotional reactions of children, and what we how we can effectively help reduce the stress.
EVENTS THAT CAN CREATE STRESS.
- Touching by unknown staff without preparation or gentle connection first
- Separation from parents in a hospital room, with lights and noise of the ICU
- Injections, incubations, intubation, x-rays and other unfamiliar procedures
- Hearing other children cry in pain or fear
- Loss of control of bodily functions or other normal choices (food, walking, sleeping)
- Repeated hospitalizations without age-appropriate explanations.
NORMAL REACTIONS OF CHILDREN TO THE EVENTS:
- Recurring dreams or nightmares
- Social and emotional withdrawal – may look normal but the child is not responsive when awake
- Calling for pain medicine when pain is not physical
- Appearing nervous, confused, upset, angry, fearful
- Worrying about dying, seeing a doctor in a white coat, seeing a needle
- Headaches or pain in stomach, and not being able to be soothed
- Play activity that does not calm and re-enacts the stressful situation
- Oppositional behavior (child appears to be non-cooperative or rebellious)
- Constantly seeking the parent
- Change in eating or sleeping patterns not related to the medical condition
EFFECTIVE INTERVENTIONS BY STAFF AND/OR FAMILY:
- Children under 2: can act out fears with toys with an adult who can soothe with voice and touch
- An older child can talk, draw, play or write about the experience in a safe caring relationship
- Children can be told that they will not always feel this way- the feelings will go away and they will be helped if they become sad or afraid again.
- Reasonable, consistent and firm behavioral limits must be used, which will make the child feel safe again if angry or oppositional.
- Parents’ presence in the hospital units can ease anxiety of the children
- Since children take their cues from parents, some parents may need some coaching to remain calm so they can see how their own reactions affect their children. Staff needs to be especially warm and empathic to gain the emotional trust of parents.
- Specific educational opportunities are also offered to staff to enhance their professional abilities in bringing stress reduction techniques to their own teams and to teach families and children ways to lessen stress throughout the hospital experience and at home.
OR SURGERY AWAY FROM YOUR HOME COUNTRY: SPECIAL SUGGESTIONS
- One week before traveling, give your family the following information:
- Name and phone number of the Rotarian In your country who has helped, Names of the host with whom you are staying with their address, phone number, name address and phone of the hospital and doctor when you have it, and your cell phone.
- Describe to your family your child’s medical problem, your travel schedule, the date of surgery or appointment with the doctor when you think you will return.
- Talk with your assisting Rotarians about visas, passports, airline tickets, and the weather where you are going.
- Bring as few things as possible, such as toys, books, blanket, stuffed animal, food, drink, pacifier, comfortable warm clothes for both of you (the plane can be cool), medicines and their prescriptions for you and your child, familiar bottle or nipple, personal items for you.
- You will meet your host family at the airport. or after arrival at their home. They will provide food, rooms, and comfort for you. Tell them what you need, such as special food or hygiene needs, as well as sleeping and socializing.
- The written material above may be helpful as you proceed through the process of surgery.
- Your medical team is available to discuss with you and your family realistic goals for your child’s recovery. If you have traveled for surgery. the medical team will communicate with your doctor at home for follow-up care.
AFTERCARE FAMILY GUIDELINES: EFFECT UPON EVERYONE IN THE FAMILY AS YOUR CHILD RECOVERS
- It is normal to expect that your child will gain more skills and independence as he/she recovers. Each child is different and will grow and change at their own pace. See what your child indicates by his words and behavior what he/she feels they are ready for in his/her activity level, eating, sleeping and socializing. He/she may need less supervision as they feel better.
- Other siblings may need more attention at this time, and it is beneficial to provide this and keep normal life activities going at home.
- You as a parent may need more time for yourself as your child needs less. Taking care of you will help.
- Stay in touch with your local doctor and keep the medication the same unless you consult with them.
- Go slow and steady during the recovery process. Your child has been through a major surgery.
- Stay calm with your child with whatever happens and reach out to the supportive people in your life if you need help.
EMOTIONAL AND EDUCATIONAL GOALS:
- If your child is of school age, and is returning to school, talk to your school administration about re-entry, information about the surgery, and any special needs.
- If your child has been out of school for an extended amount of time, you may need to work with the school to evaluate what class, grade or level is needed for him/her.
- Your child will need lots of encouragement and support to either re-enter or start school after surgery so that adjustments go as smoothly as possible.