Parent Advisory Group
The Pay More Attention Parent Advisory Group was established in January 2016. Their role as expert parents is to provide input into all aspects of the research process with the intention that this will help ensure the study is accessible to families and carried out sensitively and ethically. The group meets twice a year and aims to maintain an equal split between those who have children with and without learning disabilities, to reflect the study. Members of the Parent Advisory Group also receive a monthly newsletter updating them on the progress of the study.
In between meetings we ask parents via email for their advice or to comment on an aspect of the study. The insight and advice that they provide is invaluable in helping us to shape how we approach families when inviting them to take part in the study or how to ensure that the methods we want to use are appropriate for the time that parents have available.
One example of this is the diary that parents of children who are participating in the study will be asked to keep whilst their child is an inpatient. The research team drew on their experience of diary methods and the existing literature to draft information about the format and content of the diary. This was circulated to all members of the Parent Advisory Group inviting them to comment on the initial design and to try writing diary entries based on two previous hospital experiences. Their feedback was positive and they liked the simplicity of the diary and the space to write what they wanted to say. They asked for the diary to include the fact that only the research team would have access to the content, which was included.
We are keeping a record of the decisions and suggestions made by the Parent Advisory Group and any changes to the project that are made in response to their feedback. We are keen to show the value of their input across the lifespan of the project.