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Often times we associate chronic illness with old age and elderly people. Childhood is a time of beautiful memories, vibrancy, choices, determination and not having a care in the world. But this type of memorable childhood is not the dream of the children with some chronic illness. Their goals are simple and short term. They pray to God to reduce their pain, they pray to see the next Independence Day, they pray for their therapies to work, and they pray that they do not die today.
Chronic illnesses are very painful and untreatable. Often time’s children with chronic illness can grow to lead a normal life but the condition remains with them throughout their lifetime. Some examples of chronic illnesses are diabetes, asthma, AIDS, cancer, epilepsy, cerebral palsy, cystic fibrosis, spina bifada, and sickle cell anemia. In all cases the final option for doctors and practitioners is to help the patient and the families cope with the disease and to make sure the patient is given as much ease as possible and help them lead a normal life.
A recent best seller, ‘The fault in our Stars’ by John Green is also based on children having a chronic illness. It beautifully interprets the life of families that are in such a situation and how they deal with it. This book examines how such families make sacrifices and how the society and community help them in their long painful journey.
This paper will look into what impact a chronic illness in a child has on a family and the child. We will also be looking at the professional ways there are to help the family and patient ease into the illness and adjust to it. It will look into other considerations the family has to make and how they arrange for all the expenses. The most horrific situation is the discussion of a very near possible death of the child. Having to discuss and consider all the options with the child is often times the most difficult phase for the parents as well as the professionals.
Impact of a chronic illness on the child and family
Children having a chronic illness are not the only ones affected by the disease. The whole family is impacted and the parents and guardians need to lay to special rules and make major changes in the family setup. Schedules and priorities are changed to make sure that the family stays together and thinks as a single unit.
Parents have double responsibility towards the sick child. First of all they need to deal with their emotions and make sure that they remain calm and brave in front of all the children. The stress levels are very high in families with a child with some chronic illness. It is important for both parents to work out a schedule which ensures that at least one parent will be with the patient at times of acute illness and hospitalization and procedures. It is also important for both the parents to be understanding of each other’s feelings and they need to spend time together alone to vent their emotions and feelings.
The other healthy children in the family also need to be included in the support group. These children need to remain as helpful and normal around the sick child as possible. They might feel neglected and left out but the parents need to assure them that they are still very special and important to them. Giving each sibling a special 10-15 minutes a day with assure the siblings that their parents love them.
External help for the child and family
The community and healthcare professionals also play a very important role in making life normal for the child with a chronic illness and the family. The school which the child attends needs to understand the problem and make sure that the child gets extra breaks for any medication or required rest. The doctor may also provide the school with a detailed plan so that all the concerned teachers can also help the child lead a normal life.
Frequent hospitalization and procedures may affect the attendance record of the child with a chronic illness. His condition might prevent him to attend certain sports activities. This might bring down his motivation levels. Therefore schools should make an extra effort into introducing activities which the sick child can also compete in.
The people that connect with a child living with a chronic illness need to read and understand what the illness is all about. It is important to separate the facts from the myths so that the right path may be followed.
A child may also be referred to a psychiatrist so that he learns how to cope with the stress. In the cases in which a child develops a severe chronic illness and starts to understand that the options are finishing, then the child must be prepared for the inevitable death. The terminal phase should be dedicated to make it comfortable and that the final symptoms are controlled as much as possible. If the child is of an appropriate age, then the parents can even consider the options of using a ventilator or life support.
Adjusting to the Illness
The children living with a chronic illness need to adjust physically, psychologically, and psychosocially. If the child is old enough, then he will probably get the idea that something is not right. However, the frequent doctors’ visits, hospitalization, medications and procedures will have him confused. This is why it is important to sit the child down and explain the problem to him at his level. Parents need to provide a limit as to what the child needs to hear and what can wait.
It is the decision of the parents if they want to break the news to the child or have a health professional do it. Whichever way the parents decide, the child’s age and capability to grasp should be kept in mind. They should also discuss all the options and course of action they are going to follow. The child needs to understand what changes he and the family need to make in order to help him survive.
Raising a child in today’s demanding world is a very big challenge. It is even more challenging if the child is diagnosed with a chronic illness. The role of a parent intensifies as a health advocate in such a situation. After the initial shock of the illness, the parents need to devise a plan as to how they will manage to cover the finances. Paying the emotional price is one part of the story, but in reality there is so much more to think about.
The costs of long term health care and medications can be very expensive. Additionally having special procedures from time to time like chemotherapy cannot be afforded by everyone. Being overwhelmed and financially exhausted in such situations is normal. Insurance helps slightly but they cannot cover the whole expense and they are expensive in their own way. This is where nonprofit organizations and the government can help you cover your expenses and help you manage your bills.
Other costs that most parents do not even consider are those that are indirectly related to the child’s illness. These may be home renovations costs to build a ramp, or having a ventilator and oxygen facility in the home, or even missing time at work and having the salary cut down.
Not only children living with a chronic illness suffer but it impacts the whole family. It is important that the parents understand the complexity of the situation and deal with it together. Dealing with stress is as important for the support group as dealing with the pain and illness itself. The health professionals should also lay out all the options so that the concerned family can make an informed decision.
No matter what the costs or the odds of recovery, each parent wishes the best for their child and wishes to provide them with the best of care and love. If the society and government help these parents in making their child’s life normal, then it will definitely reflect back in the society.
Kyla Boyse, L. B. (2012, November). Children with Chronic Conditions. Retrieved November 28, 2013, from University of Michigan Health System: http://www.med.umich.edu/yourchild/topics/chronic.htm
Martini, D. R. (2013). Helping Children Cope with Chronic Illness. Retrieved November 28, 2013, from American Academy of Child Adolescent Psychiatry: http://www.aacap.org/aacap/Medical_Students_and_Residents/Mentorship_Matters/DevelopMentor/Helping_Children_Cope_with_Chronic_Illness.aspx