Understanding communication experiences of teenagers and young adults with cancer: Analysis of a structured questionnaire

Abstract

Purpose

The purpose of this study was to seek young people's experiences of communication with healthcare professionals following a cancer diagnosis. We specifically sought to explore what are the experiences and preferences for healthcare communication for teenage and young adults with cancer, and how does the presence of a third person impact communication with healthcare professionals?

Methods

We recruited young people with cancer between the ages of 13 and 25, diagnosed in the United Kingdom in the last 5 years. A questionnaire with open ended questions and free text responses was used to collect richer, contextual data related to communication experiences. Free text responses were coded, and codes were collapsed into themes.

Results

A total of twenty-four young people responded to the questionnaire. Participants were diagnosed between 13 and 24 years, predominantly female with representation from across the United Kingdom and several cancer types. Themes included building rapport and trust with healthcare professionals; developmentally appropriate language; and healthcare professionals’ communication skills. Effective communication enhanced understanding, autonomy and reduced negative emotions. Conversely, ineffective communication increased negative emotions and a sense of dehumanisation. Young people wanted to be involved in shared decision making, though preferences varied. The presence of supporters could be both enabling and inhibiting.

Conclusion

This data highlights the positive and negative impacts of (in)effective communication including the role of supporter who accompany teenagers and young adults with cancer during communication encounters. There is a need for further research and particularly the development of specific, multidisciplinary training for healthcare professionals to develop skills to meet the communication needs of this unique patient group.