Traditionally, the experience of serious illness has been approached in two ways: (1) agloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyannaapproach that denies altogether that there has been a real trauma. Both of theseperspectives distort and disguise the reality of chronic illness.
What is a chronic condition?
All children will likely have many different health problems during infancy and childhood, but for most children these problems are mild, they come and go, and they do not interfere with their daily life and development. For some children, however, chronic health conditions affect everyday life throughout childhood.
We’ll define a chronic health condition as a health problem that lasts over three months, affects your child’s normal activities, and requires lots of hospitalizations and/or home health care and/or extensive medical care.
Chronic condition is an "umbrella" term. Children with chronic illnesses may be ill or well at any given time, but they are always living with their condition. Some examples of chronic conditions include (but are not limited to):
Illness often interferes with routines and activities. For children and teens, a particularly devastating consequence can be the weakening or loss of friendships. Friends can grow apart as a result of these changes. Keeping kids involved with their peers and making extra efforts to maintain those connections can go a long way in helping a kid cope with an illness. Helping your child to find new ways to make and maintain new relationships is critical during this time. You may also need to help your child find ways to cope with teasing from peers. Here's help: .
Children need to feel like they belong. Their peer relationships are an important arena for them to do this. Try to help your child find interests and activities that provide opportunities to connect with other kids with similar illnesses. Give them opportunities to spend time with friends. Teens need to be exposed to other caring adults they can trust. Contact with these adults should be encouraged in order to help shape the direction of their lives and provide stability. Most major hospitals and clinics can help you find support groups for parents, families, and for children affected by the illness.
Some tasks for children with chronic illness must be done no matter what. Others are more flexible. Know what tasks are mandatory (scheduled medications, specific diets) and which are open for discussion (“as-needed” medicines, choice of foods within a given diet). Conflict may arise when a child tries to assert independence. As preschoolers, and even older kids test adults' limits, there is natural conflict with adults' demands. Children with chronic illness, more than other kids, need chances to make choices—to have control over any part of their lives they can control.
This book helps you answer the questions: “What kind of parent am I now? What kind of parent do I want to be? How can I help my child with a chronic illness lead the fullest life possible?” This book aims to help you keep your perspective, and will remind you that you are not alone.
It's important to be very familiar with your child's illness, no matter how scary it is. If children feel like they know more than you, they will feel responsible for protecting you. Read as much as you can about your child's illness. The more knowledge you have, the more likely you will be able to obtain the best care for your child. If you want more information about your child's chronic illness or health condition ask your county public health nurses, or the child's health care provider. Keep a written list of questions that come up, so you can ask at each medical visit. Don’t hesitate to call your child’s doctor with your questions or concerns.
In addition, there are many national organizations for specific health conditions, and many of the resources and links on this page can help you find information specific to your family's needs. You can also research online and learn more about your specific health, illness and medical procedure questions at the University of Michigan Health System , (also in ), or the illustrated MedlinePlus (also in ).
What are some other sources of information and support for kids and families living with a chronic illness?
Goal-oriented striving, any experience of mastery, any outside acknowledgment ofcompetence, a well-tuned sense of humor, any experience of joy, and the constant strivingtoward an inner state of tranquility are the aids that help overcome the displacement anddepression of chronic physical illness.
The emotional trauma of chronic physical illness is caused by loss of a valued level offunctioning, such as the ability to drive or dance, for example. The chronically illperson not only suffers the loss of immediate competency but is deprived of an expectablefuture. No one's future is ever guaranteed, but most people become accustomed to lookingat the odds; if I invest my energies in a particular direction, I can be reasonablycertain I'll reach a desired goal in that direction. When illness intervenes, all pastefforts may seem irrelevant -- and in fact they may be.
Your paper must include a diagram that plots each of these relationships using the STAR model to depict an ideal clinical microsystem model of care for patients living with this chronic illness.4.
Caregivers/parents need to take good care of themselves—otherwise, they won’t be able to give good care! Talk with other parents who have children with special health care needs, carve out time to do something you enjoy, get support, find someone to listen to you vent, take breaks, spend time with your partner, and learn to deal positively with your stress. If you can keep your family routine as normal as possible, that will help, too. Your relationship with your partner will be stressed and undergo changes, but it can emerge stronger than before you faced the challenges of your child's illness together. Seek help if you need it.
Friends sometimes respond by showering the sick person with cards, flowers, andget-well-soon wishes. Unfortunately, much of this is misdirected. The very ill personoften cannot appreciate these signs of concern and affection. Patients often feel burdenedby all the thank-you notes they cannot send. Friends can often do more by helping thefamily and other members of the support network to deal with the medical system, theincoming phone calls, and to give direct support when it becomes clear that the idea of"get well soon" has no relevance to chronic illness.