Co designing a Study of Youth with Youth: Visiting the ED with Mental Health Crisis

by Susanna Koczkur & Svetlana Shklarov

as published in the PERG Spring/Summer 2018 e-newsletter

In situations of acute mental health emergencies, young people in Alberta have been increasingly using Emergency Departments (ED). To explore youth experiences when accessing ED, the Alberta Health Services Addictions and Mental Health (AMH) SCN, in partnership with PaCER, is using a survey questionnaire to engage large numbers of youth and their parents. 

Before beginning this study, we wanted to ensure that the questionnaire would be relatable to youth. The AMH SCN and PaCER planned to help engage youth in co designing the questions. The goal was to adjust the language, wording, layout and areas of conversation used in the questionnaire, so that youth participants would feel engaged, respected and comfortable responding to it. The PaCER model is founded on engaging people with lived experience in planning research –- known as co design. 

PaCER held an all day co design focus group on February 4th, 2017 at the Distress Centre with 10 youth, all over the age of 16 years, to explore the topic of youth experiences visiting the ED with mental health crisis. Young participants reviewed the draft survey questionnaire and gave PaCER researchers specific input on design, layout, wording and content to offer to the designers of the questionnaire. Language and content of questions needed to reflect a natural dialogue of this age group. It was found that small but significant changes in language turned out to be key in creating interest and participation. For instance, participants changed the term ED to ER. 

Co design Outcomes

The youth participants provided a re-design of the questionnaire to make it specific to youth and advised on how to best connect with youth. The co designed questionnaire would be sent to youth separately from their parents/family using different engagement methods as it was found that they are more likely to respond if they are connected directly online using social media or texting. We learned not to use email as youth are not likely to respond to emails!

Over 900 questionnaires were completed and returned. The PaCER’s youth-led co design informed the methods of engagement with youth, giving researchers more opportunity to collect ‘lived experiences’ data. 

For more information, contact susanna.koczkur@gmail.com

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The PaCER model is founded on engaging people with lived experience in planning research –- known as co design.