It’s not just about making them talk - thoughts and experiences on interviewing children in research

Historically, children’s views have not been valued in medical care.  In research, children have been seen as a vulnerable group, difficult to access and unable to tell their story. Many proxy studies have been performed where health care staff and parents have given their views about what they think the child experiences. However,it is difficult to draw valid conclusions about the child´s experience using proxy valuations. Children have the right and the ability to contribute unique information about their own experiences. These views are valuable in providing evidence based care.

The aim of this paper is to share experiences and thoughts gained from interviewing children with cancer aged 3-13 years of age.

Young children (from 3 years of age) have sufficient mental ability, cognition and concepts to describe experiences– just not in the same way as adults. They are able to articulate their experiences, providing the interview context feels safe, questions and props are developmentally appropriate and the interviewer follows the child’s leads. Special considerations need to be taken such as how to best inform them about the study, ethical issues, where and when to undertake the interview, how long the interview should be, how to make the child talk in the interview and which elucidating devices/props  can  be used during the interview as facilitators.  Parental contributions to child interviews can be useful as long as focus is kept on the child’s experiences. Interviewing over several time points gives new insights.