The psychology of dealing with chronic life-threatening disease

Feelings

The uncertainty, anxiety and fear of living with a child suffering from a chronic illness can cause enormous challenges. Parents experience extreme emotions ranging from anxiety, anger, sadness and guilt to fear.

• Anxiety
  Several things may cause anxious feelings e.g. high costs of medical care or uncertainty of a definite cure. These feelings may, over time, cause depression.
• Anger
  Parents may feel that life is unfair and become angry with the Creator when they see other families who are healthy and without similar problems. They may feel overwhelmed and frustrated when the disease does not respond to treatment or when the condition becomes worse.
• Sadness
  The loss of a carefree family and a childs inability to live a normal life, may cause feelings of sadness.
• Guilt
  Parents might feel that they could have or should have done something earlier, especially if the condition is hereditary.
• Fear
  Constant uncertainty about the future and how to cope with it can create fear.

How to deal with emotions

It is important hat parents enjoy their child and conduct life as normal as possible to ensure that the disease does not control their life. They should become experts of the disease, its management and prognosis or how to manage and nurse a patient suffering from a chronic disease. It is important that parents nurture themselves spiritually, mentally and physically (regular exercise).

By becoming knowledgeable about the disease, new understanding may diminish fear of the unknown and lead to development of a more realistic view of the future.

Parents should not isolate themselves during stressful times. They should not neglect relationships with their spouse or other family members (the family unit is much stronger than the individual - ask for support from family and friends).

Parents of children with chronic life-threatening diseases need support from their family, while their family still need their love, attention and support. They should continue to spend quality time with their family and friends and keep communication flowing.

Parents should also source assistance from professional counsellors; it will benefit the whole family. The counselling can take place in a group or on an individual level. Parents can also contact families who have been in similar situations for guidance, comfort and encouragement.

Parents often neglect themselves while caring for a seriously ill child. During these times, they need to remember to take care of themselves and maintain a positive attitude. This means arranging some personal time, getting sufficient sleep, eating balanced meals and finding an outlet for stress such as exercise (even walking) or meditation or some form of relaxation.

A childs concerns during growth and how to deal with it

Young children, like all people, commonly fear the unknown. The uncertainty of what may happen to them makes them scared of the future.

They may also demonstrate anger because of their loss of independence (having to stick to certain routines; having to take specific medication; not being able to take part in all activities like other children; having to visit the doctor and the hospital regularly).

As they grow older, they may be upset because they are perceived as different to other children.

The best way to handle this challenge is to give some thought in advance as to how to respond to each situation.

Children approaching puberty may be more concerned with their appearance (if smaller than average) and ability to fit in with peers.

Parents should try to manage their own feelings and present a positive image to their child. They should not allow anxieties and sadness to distort their childs coping process and outlook on life. Children are quick in sensing and picking up emotional signals from those closest to them, even if they do not talk about it. Parents should educate and talk to their child about the disease process and the possible outcome, as this will help the child to understand the disease process and overcome any fear. Creating a climate that encourages and supports shared feelings can also help a child deal with reality.

Although it is understandable that parents may be overly protective, it is better for their childs development and self-image if parents support their childs efforts to live life as normal as possible. A child needs to feel part of a peer group and not isolated because of their illness. Parents should encourage their child to do all that he/she is capable of as long as it does not negatively affect his/her condition; yet always sticking to the required treatment protocol.

When a child is old enough to understand, parents should explain why he/she has surgical scars, why medication needs to be taken and why they have to visit the heart specialist regularly. A child should be made aware of certain warning signs that require medical attention and he/she should be encouraged to become involved in their own care; this will help a child to become more confident and positive regarding living with at heart condition.

It is important that children meet and have contact with other children with heart conditions (congenital heart disease). This will prevent them from feeling isolated and lonely. Parents can get in contact with support groups through their childs heart specialist or the local childrens medical centre or support groups.

© 2003 Prometheus™ Healthcare (Pty) Ltd