As I was sitting in my OPD last evening, a 45 yrs. old gentleman walked in, who had been waiting for his test results. He was accompanied only by his young son who was 12 years old. I could read the fear lurking in all the 4 eyes and I was at a loss and could not decide as to whom I should break the bad news. At that moment something in me softened, unsettled and tears of transformation poured like a river from my soul. And suddenly I realised that we as healthcare professionals are never taught how to communicate with the children on this delicate topic. Unfortunately, addressing the needs of children is not a part of routine cancer care. It made me think that if it’s so tough for me as a clinician, how tough it must be for the parents to converse with their children about cancer diagnosis. We don’t know yet if less is enough or is more better?
Please remember parental cancer is a family experience. All of us try not to raise the issue of cancer with children as we want to shield them from pain and to protect them for fear of losing someone. A number of studies have shown that children of cancer patients represent a hidden high risk group who are at a very high risk of psychological disturbances and if we don’t have a compassionate dialogue with them it may have long term impact on their future lives. We need to look at the smiles that may never smile. We need to look at the subtle, the hidden and the unspoken.
Many a times we assume that children may not know about the diagnosis and so we tend to talk in hushed tones. But please remember children are intuitive and they can easily detect any change in family dynamics very easily. And so, if they are not aware of the diagnosis, they feel frustrated and left out because of poor understanding of feelings, emotions and the medical language spoken. It has been found that school going children from age 4-7 years face emotional problems and isolation. The adolescent children (12-18 yrs.) especially girls are the most effected group and have emotional and stress response to the parental cancer diagnosis. These children are at that stage of life when they need “Free zone” or independence from their parents and they want to meet their friends but instead they are loaded down with additional roles and responsibilities. This may lead to somatic issues as fatigue, abdominal pain, dizziness, and sleeping problems as well as post traumatic growth and psychological issues. Unfortunately, the parents as well the healthcare providers underestimate the impact of cancer diagnosis of parents on children. At times children feel guilty for being alive or even to laugh when their parent is suffering.
It has been seen that the children who have an open conversation about their parent’s illness cope better than the ones who don’t know anything about it. These children need support of their parents, their peer group, the parent’s network, family support as well support of healthcare providers. So, giving you some tips on how to deal with it.
Few pointers for the parents :
1) This delicate question definitely needs to be discussed with the children.
2) Have an open and honest communication with the children as per their age and cognitive maturity.
3) Explain things simply but truthfully.
4) Let them know that they are not responsible for your cancer diagnosis.
5) Explain the treatment plan and what all changes and adjustments are expected in the daily routine of the family.
6) Explain about the physical changes that may happen as hair loss, disfigurement of body, fatigue, weight loss, any need for prosthesis etc.
7) Give assurance that inspite of cancer diagnosis , someone will always be there to take care of needs of their children.
8) If they ask some questions, don’t give false replies rather tell that you don’t know the answer but will get back to them.
9) Tell the children that they are loved and they need to take care of themselves too and not to feel guilty if they enjoy with their friends.
10) Let them have an emotional connect with the healthy parent.
So, I urge all the healthcare providers to educate the parents on timing, wording, amount of information to be imparted and how to respond to child’s reaction to the diagnosis. Let’s understand the family dynamics as well and provide support to the child as well apart from the ailing parent. Please remember the child matters too….
Let us be the “kya Faya kun” for the child- it means someone putting a blanket over you gently when you were having a bad day and you were too weak to do it yourself. Kun Faya Kun is that blanket that we have to put over the emptiness of that child.
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