University of Leicester eBulletin

Communicating with Young People Who Are Seriously Ill is Difficult

February 2003
No 38

Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents 
BMJ Volume 326

Young people who are seriously ill can feel unable to participate in consultations and parents may be reluctant to communicate openly with their children. Health professionals must try to balance the different priorities of young people and parents, suggest researchers from the University of Leicester in this week’s British Medical Journal.

Thirteen cancer patients aged 8-17 years, and their parents, gave accounts of communication about their illness.

Most parents described acting in an executive-like role, managing what and how their children were told about their illness, particularly at the time of diagnosis, when parents faced the difficult job of dealing with their own emotional responses. Parents were very keen to protect their child’s well-being, and wanted to show their child that they were strong and optimistic. This could sometimes mean that they avoided sharing threatening information with their child.

While the young people welcomed their parents’ involvement, some felt that communication was constrained by their parents’ role. One patient aged 15 said: “…I still didn’t feel that they were telling me everything”. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors.

The young people in our study clearly wanted their parents to be involved in communication but were not always satisfied with how communication was managed, say the authors.

Professionals need to remain aware of how the power relations of professional-parent-child encounters can be an obstacle in forging successful relationships between health professionals and young people. These issues will be of crucial importance in implementing the new children’s national service framework, they conclude.

The study was conducted by Bridget Young, formerly of Leicester and now at Hull, with Mary Dixon-Woods, Kate Windridge and David Heney from the University of Leicester.

NOTE TO EDITORS: Mary Dixon-Woods, Senior Lecturer in Social Science and Health, Department of Epidemiology and Public Health, University of Leicester, 22-28 Princess Road West, Leicester LE1 6TP. Telephone 0116 252 3204 or Email md11@le.ac.uk

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