Communication in Paediatric Cancer Patients: A Parent's Perspective

Clear and honest communication done sensitively is important in the holistic management of children with cancer and their parents. Little research has been done in India to assess the health information needs of sick children (and their parents). Also the quality and adequacy of information given by health professionals not been looked at.

To address this knowledge gap, Dr Tullika Seth, a haematologist at All India Institute of Medical Sciences has done a pilot study where she interviewed parents of children aged 10 to 18 years with acute lymphocytic leukaemia (Seth T, Indian Journal of Palliative Care, Jan-Apr 2010). The results clearly show that in the Indian context, parents wanted little information to be shared with their children (65% did not want their children to be informed of the diagnosis; 60% did not want the child to be informed about side effects of therapy and especially about long term effects). There was even a stronger opinion about not involving children with decision-making (95% did not want them to involved with making any decision about the treatment; 100% did not want them to involved with making any decision about stopping curative treatment when such a situation arose).

These findings would be useful to health professionals in "forging an alliance with the family to facilitate communication" as Dr Seth says. They also offer us insight into the different attitudes and practices in India compared to the Western context, where patient autonomy is more visible.