Involving families in research

By Shaun Liverpool
Monday, 18th February 2019
Filed under: ESRBlog

I left the halls of the university to embark on an unexpectedly exciting journey. I was a bit nervous but mostly excited to experience the building of an app. This marked the start of my secondment at Create Health.

By the second day of secondment, I was comfortable being part of a non-academic environment. The office space was very relaxed, and so was I. Then came the reality of the volume of work that was before me. Nonetheless, I enjoyed every minute of involving families in the development of an app to be piloted as part of my PhD. The secondment lasted for 6 months and at each stage required obtaining feedback from parents to inform the design and content of the Power Up for Parents (PUfP) app. The main purpose of the app is to promote the involvement of parents in child mental health decisions. Therefore, we aimed to seek input from parents on what PUfP should do, and what it should look like..

We sought the views of members of the Family Research Advisory Group (FRAG). on the design of this research project. FRAG members were asked questions via email and attended two meetings during 2018.

Some changes were made to the research project because of what the parents said. This included:

  • Better information for parents taking part in the research. This covered how to use the app and what happens to their data.
  • Adding a ‘Resources’ section to the app
  • Using social media to invite parents to take part in the research

Some of the things the parents expressed did not lead to changes. This is because these suggestions were about the topic of the research, and when different parts of the research were carried out. Therefore, these had already been decided, at the point of the FRAG consultations, and could not be changed.

How did we approach this?

Step 1: An email consultation round was conducted where the FRAG provided input on the value of the Power up for Parents intervention, and which group of parents we should target for recruitment.

Step 2: The study design and an example of how the intervention might be used were presented to the group and the pros and cons of digital versus other formats of decision-making tools were discussed along with general thoughts and concerns on the study design.

Step 3: At a group discussion we examined the final version of the study design. There was further discussion on how parents could use and benefit from the PUfP app in practice.

At the end of 6 months we have a functional prototype! Thanks to Create Health and the parents involved in the FRAG consultations for their valuable input. Now with great excitement, I am about to begin the pilot testing of PUfP. Click here for more details.

Our Network Partners

  • University College Dublin

  • Denmark Technical University

  • Technical University Vienna

  • Medical University Vienna

  • Anna Freud National Centre for Children and Families

  • University of Glasgow

  • Region H Psychiatry

  • Telefonica Alpha