Get involved in research
Families, babies, children and young people are at the heart of research at Rainbows. Their experiences can help researchers understand what matters most, explore how care could be improved and shape children’s palliative care for the future.
How you can get involved in research
There are different ways families may have the opportunity to get involved. This could mean taking part in a research study, sharing experiences or views, or helping researchers shape what future research should explore.
Taking part in research is always a choice. Choosing not to take part will never affect the care or support a baby, child, young person or family receives from Rainbows.
Taking part in a research study
When Rainbows is involved in a study looking for participants, families who may be eligible could hear about it from a member of the Rainbows team, receive information about the study, or see an opportunity advertised at Rainbows or on our website. What taking part involves will depend on the research. It could include:
- completing a questionnaire
- taking part in a group discussion
- talking one-to-one with a researcher, either in person or online.
Before anyone decides whether to take part, they’ll be given information explaining the research and what’s involved, with an opportunity to ask questions. If they decide to participate, they’ll be asked to give their consent. Even after giving consent, participants can change their mind and withdraw from a study at any time.
Helping shape our research
Getting involved doesn’t always mean taking part in a research study.
Rainbows wants babies, children, young people and families to have a voice in how research is developed. Their experiences and views can help researchers identify the questions that matter, consider how studies should be carried out and make research more relevant to the people it is intended to benefit.
This is part of our approach to Patient and Public Involvement and Engagement (PPIE), helping make our research inclusive and meaningful. The Research and Education Strategy specifically commits Rainbows to working in partnership with families and the public in this way.
Privacy and confidentiality
Information collected as part of research is handled securely and confidentially. If personal information needs to be shared as part of a research study, this will be explained and appropriate consent sought.
Each study will provide information about how data will be collected, used and protected before someone decides whether to take part.
Interested in getting involved?
Families can speak to a member of the Rainbows team to find out about opportunities to take part in or help shape research. They can also contact our Research team to express an interest in hearing about future research opportunities that may be relevant to them.