Ways of being involved

What does being involved mean? Find out here

There are many ways to be involved in the research the unit hopes to carry out. We would like our Family Faculty members to work with us as part of the team; there is no need to have any experience of research. Getting involved with our programme of work is different to being a participant or a subject in research. We appreciate that the amount of time families have varies and we understand when families need to dip in and out of being involved. We are always looking for new ways for families to get involved, so if you have a suggestion that is not listed below then please let us know.

Here are some ways you could be involved:

• First, join the Family Faculty which does not commit you to anything; we will keep you informed of the work we are doing via email (or post) and our newsletters.

Once you are a member of the Family Faculty you can:

• Suggest research questions you think we should ask.
• Ask about the evidence for a treatment or therapy
• Get involved in project working groups
• Make suggestions about the language we use, help us design plain language summaries.
• Attend a Building a Partnership (BaP) day
• Come with us to conferences.
• We may offer other opportunities from outside organisations.
• Or get involved in other aspects of the work that we are doing that you have an interest in.

Some of the benefits of being involved:

• Meet other parents who have similar experiences and exchange information.
• Learn and develop skills about the research process.
• Contributing to research that could influence change in practice.
• Don’t just take it from us, have a look at these parent experiences of being involved in our Family Faculty!

If you are interested in being involved with the unit then please get in touch; we would love to hear from you.

What is a project working group?

A project working group is a group of researchers, families, and healthcare professionals who are contributing to a particular research project, which is being carried out by the unit. These groups are held so those who are interested in it can be updated on the progress of the project and contribute to how the project is run.

If you are interested joining a working group for a particular project, you may be involved in these activities:

Attending meetings with other interested families, health professionals and researchers.
Contributing your ideas and opinions on how the project should be carried out.
Reading the study protocol and other documents, and telling us what you think about them.
If you are unable to attend meetings, you can contribute by email or over the phone.

What is Building a Partnership?

We have established a successful shared learning programme we call ‘Building a Partnership’. The purpose is to help us reach a mutual understanding of the context of research with respect to families’ expectations, and provide parents with skills to help us work together. We coordinate with families and relevant professionals to put together a workshop that meets the identified needs of our Family Faculty and we host them once or twice a year. Previous topics covered have been:

• Constructing a research question
• Introduction to research designs and terms
• How to find reliable information on the internet
• Models and theories of disability

If you have an idea or suggestion for a ‘Building a Partnership’ workshop then please get in touch!