Evidence Library

Title: Exciting but exhausting: experiences with participatory research with chronically ill adolescents.
Author: von Staa, A., Jedeloo, S., Latoru, J. & Trappenburg, M.
Date Published: 2010
Reference: Health Expectations, 13(1), 95-107.
Are service users or carers authors: Yes

Abstract:

This project explored the feasibility, benefits and limitations of involving chronically-ill adolescents as co-researchers. The aim was to evaluate hospital services for young people. The adolescents were involved in developing a set of interview questions and interviewed each other and fellow patients at a disco held for this purpose. They did not take part in the data analysis although they were invited.

The researchers conclude that it was difficult to find adolescents to get involved in the research, that the peer-interviewers did not probe deeply enough in their questioning and therefore the findings were limited. They also note that maintaining the young people's interest in involvement was difficult and the process was very resource intensive.
   
However the authors also note that the peer interviewers only received one afternoon of training and so were not very well-prepared. Most interviews only lasted 10 minutes and took place in a noisy, crowded environment that prevented tape-recording. Typists transcribed the notes on the spot and may have missed important details and nuances.
   
The project did not therefore contribute any new insights to inform the design or evaluation of services. However, it did create a lot of interest from the media and health-providers both in the hospital and nationwide. This helped to increase hospital professionals' awareness of the health-care needs and preferences of adolescents with chronic conditions.

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Related entry: none currently available

Categories: health
public health
Designing research
Undertaking research
impact on research
impact on service users involved
impact on implementation and change
impact of public involvement
journal article

Date Entered: 2010/09/28

Date Edited: 2012/11/20

Additional Info: