Psycho-Social Aspects

 IMPACT ON THE FAMILY

When parents are informed that their child has a life threatening disease that will result in visual impairment, shock, grief, anger, despair, and anxiety about the future develop. An understanding of grief and grieving may help you to remold your life and emerge psychologically healthy. Your child will need your help to achieve his/her potential. Grieving is a continuous process, and it is important to know that all people are capable of experiencing several different emotions at the same time. When having to face the acceptance of bad news, people’s emotions come and go in waves.

This is an emotionally traumatic time in a parent’s life. The initial shock for parents may be devastating and is accompanied by denial that the whole situation is really happening, or hope that this is a bad dream that will soon end. The grief and sorrow that parents feel after receiving the diagnosis may be overwhelming as they feel sad and disappointed, not only for themselves but also for the child who they feel will never be able to do the things they had hoped he would do.

Facing a course of treatment that could require removal of one or both eyes, cryotherapy and laser therapy, chemotherapy and radiation therapy, or combinations of the above, will prove to be
anxiety-producing and could be accompanied by depression and/or fear of what the future holds.

Another very common feeling for the parent who has had to face illness in his or her child is anger and resentment. When a child is the victim of an accident, it is always possible to establish a cause and effect relationship, e.g. a speeding car or an unlocked gate. For the parents of a child with retinoblastoma, there is no rational explanation and anger feelings such as “Why my child?” or “Why didn’t Dr. X diagnose
the condition earlier?” are normal. They simply reflect the unfairness and injustice of having to watch their perfect child become their “disabled” child.

There may also be feelings of guilt when the parents inevitably begin to question their own degree of responsibility. Under the circumstances, questions such as “Did I do anything wrong during the pregnancy?” are common.

Brothers and sisters will find this time very difficult as well. Their parents are suddenly away at the hospital and very upset. The more the older children can be told about the situation and the reasons for the upset, the better they will cope with it and help not only their parents, but also the affected child.

There is no set timetable for grief, but the process of moving towards resolution (i.e. being whole again) is important. Gradually, as parents learn to accept this new situation and as their emotional strength returns, they will learn to seek out the resources necessary to proceed with a normal life for themselves, their child and the rest of the family.