Advocating for your child is a family affair.When a child is newly diagnosed with a chronic illness such as diabetes, sickle-cell disease or juvenile arthritis, it affects the entire family. Life will never be exactly the same. Chronic illness changes family members’ roles, responsibilities, schedules and priorities. Many parents may experience a sense of powerlessness in the beginning as they realize there is no cure for a chronic disease, and that the future is uncertain and unpredictable.
In order to gain a sense of empowerment and to have a better idea of what the future may hold, it’s important to understand all aspects of your child’s diagnosis and unique healthcare needs. As a parent, you need to find out as much as possible about the condition and care, certainly from your child’s healthcare provider and specialist, but organizations such as the American Diabetes Association and the Juvenile Arthritis Foundation may have local chapters to provide you with additional information. Becoming informed and networking will help the diagnosis seem less frightening, and you will feel more in control. Information will help you plan, guide and advocate for your child.
Most childhood health problems are mild. They come and go and do not interfere with daily life or your child’s development. Chronic health problems affect everyday life and impact your child’s daily routine and activities. Treatment may be painful or uncomfortable for young children, and they may need close monitoring to avoid potential complications.
It is important to keep the lines of communication open with your kids and always find out what they are feeling. Parents may be surprised by which aspect of the illness children find difficult. As children grow, their ability to understand more about their diagnosis and take responsibility for their care should increase. It’s important to spend time with them and understand what they know, filling in the gaps and correcting information they don’t comprehend properly. The hard part is determining the right age to transfer responsibility for care to the child.
The best outcome of adjustment that parents and providers hope for is acceptance of the condition and adherence to treatment. How children respond is based on their characteristics, developmental stage, stability of the illness, how the family is coping and support from the school environment. Some kids have a positive attitude and cope well with their diagnosis, not letting it interfere with their daily routine and activities. Some children are overwhelmed with all the changes that living with a chronic illness entails, and parents need to emphasize their strengths and the things they can do well.
As children develop and reach a better understanding of the care needed to manage their chronic illness, they should be encouraged to master the day-to-day tasks and receive praise for their efforts. If the child’s condition remains stable and is well controlled with the treatment plan, it is easier for both child and family to face the new responsibilities of managing a long-term illness. A flexible healthcare team at school that values the child and parent as part of the team provides additional support.
Children may cope well one day but not the next. Listen and let them express their emotions, as there will be times that they are feeling frustration, anger or rage. If there is a change in their normal routine, an extra test or change in medication, inform them as soon as you are aware and explain the reason for the change.
One way for kids to become empowered and feel like they are not alone is to be involved in activities with other children with the same chronic illness. It is also important for parents to be with other parents to share resources, information and advice.
You cannot be with your child all the time, and emergency situations may occur. Complications, such as seizures or episodes of hypoglycemia, may happen when least expected. Friends or family need to be aware of what to do. When the diagnosis is new, it takes extra planning to make sure that your child is always with someone who will know what to do in an emergency. Your child should wear an emergency bracelet with the diagnosis in case emergency services need to be called. Kids must understand that even though they adhere to their medical plan, complications happen that may be due to reasons such as growth spurts, underlying infection, increased activity or hormones. Parents and providers need to be aware of these transitions, as a change may be needed in the medical treatment plan.
There may be times when kids feel frustrated and don’t want to deal with their illness or comply with their treatment plan. They should always know that a family member as well as the school nurse will assist when they ask for help, so they must let their needs and concerns be known. When they are ready to resume responsibility for self-management of their illness, they should be able to resume care, and you need to respect their choices.
Raising a child with a chronic illness is certainly a family affair, and parents need to know how valued they are on a daily basis.
Sheryl Zang, EdD, FNP, CNS-BC, is an Associate Professor at Downstate Medical Center, College of Nursing. A nurse for 38 years, she is presently running groups for diabetic children and teens.