What is the project about?

The PAEDS Diagnosis Project is a research study exploring the phenomenon of diagnostic shifts in youth mental healthcare settings.

Psychiatric diagnoses can be very important in helping young people and their families make sense of the difficulties they are experiencing. Sometimes, for various reasons, mental health clinicians may decide to change a young person’s diagnosis.

Our research project aims to develop a develop a better understanding of what happens when diagnoses change. Questions we wish to answer include:

  • How frequently do diagnostic transitions occur in child and adolescent mental health settings?

  • What are the most common reasons for a change in diagnosis?

  • How do young people and their families make sense of diagnostic shifts?

  • Do diagnostic shifts cause any difficulties for young people or their families?

By doing this research, we will gain a greater understanding of how, why and when diagnostic changes happen, and how they can affect young people and their families.

We hope to use the research findings to develop guidelines for how clinicians can communicate diagnostic transitions in a way that minimises confusion and distress. We also want to develop resources for young people and their parents that explain the reasons why a diagnosis may change, acknowledge the challenges this change may present, and suggest potential strategies for managing these challenges.

What does the project involve?

There are two stages to the project. The first involves reviewing clinical records to calculate the proportion of young people in CAMHS who experience a diagnostic transition. We also wish to investigate if there are any typical patterns in how diagnostic shifts occur and if they are related to factors like gender, age or ethnicity.

The second stage involves interviewing young people who have undergone a diagnostic change and their parents. These are the ‘experts by experience’ in how diagnostic transitions can affect young people’s lives. In the interviews, we would like people to tell us, in their own words, how they understood the reasons for the change in diagnosis, whether they thought it was a positive or negative development, and whether the diagnostic change caused any difficulties for them. All participation is completely anonymous and confidential.

If you have a child aged between 11-18, who has previously experienced a change in their psychiatric diagnosis, we would like to invite your family to take part in our research.

To find out more about participating in the research, please phone or email the researcher, Dr Cliodhna O’Connor at the details here. She will explain the study to you and answer any questions you might have.

Who is running this project?

This project is led by Dr Cliodhna O’Connor, an Assistant Professor in the UCD School of Psychology. The project is funded by the European Commission under the Horizon 2020 programme (Marie Skłodowska-Curie Individual Fellowship, ref 702970).