Researchers often contact us to ask if we can help them find parents to take part in their studies. Usually, they want to hear about parents’ experiences of stillbirth or neonatal death and/or the care they receive (before and/or after the birth). We advertise opportunities to become involved in research on our Facebook page.
Study design and oversight
We are often approached by researchers who want to involve members of the public with specific experience in their proposed study. This is called patient/public involvement (PPI), and it’s now a vital part of health and medical research. PPI can take different forms: you might be asked your opinions over the phone, or at regular meetings with the research team and/or other lay people, for example. Or you may be asked for your opinions on written information that has been produced for potential participants in the research.
General information about PPI and getting involved in research has been produced by INVOLVE, which supports PPI in UK health research. You can also register your interest in helping with research with the National Institute of Health Research here.
We have the following ‘live’ opportunities at present. To be considered, you’ll need to:
- Be confident to speak in meetings
- Have the ability to understand the broad aims and design of the research (you won’t need to be an expert, but some understanding of science and research is needed).
Email Janet Scott, our Research and Prevention Lead, at firstname.lastname@example.org for further information.
1. Designing good-quality stillbirth bereavement care research
A research team in Bristol is looking for parents of a stillborn babies (who died at least 6 months ago) to help identify the most important aspects of bereavement care that should be measured in studies. This will involve discussing what future research should look like and developing key messages for bereaved parents.
Parents from all backgrounds are welcome to get in touch. The researchers are particularly keen to involve fathers and people from black and minority ethnic groups. You must be able to travel to Bristol. There will be a taster/team building session in Bristol and then five other meetings over the course of the 3-year project. Travel costs will be covered by the research team and parents will be thanked for their time with gift vouchers.
2. Experience of high blood pressure in pregnancy? (not pre-eclampsia)
A highly regarded study team is seeking an articulate woman with experience of high blood pressure to give a lay perspective to their study. This will involve attending regular meetings either face to face or via teleconference.
Taking part in research
Researchers also contact us to ask if we can help them find parents to take part in their studies. Usually, they want to hear about parents’ experiences of stillbirth or neonatal death and/or the care they receive (before and/or after the birth).
Sometimes a study will ask that people who take part meet specific requirements relating to themselves or their experience, such as when or how their baby died.
We understand this could disappoint parents who would like to take part and have their experiences heard, but do not fit the criteria. Research studies are limited by resources and time, and researchers have to make choices when they design their studies.
This means that they are often unable to include every baby, bereavement or circumstance and have to select a specific group to focus on for detailed analysis. By inviting certain groups of parents to take part, they are in no way suggesting that other experiences are of less interest or value.
Please do continue to keep an eye on this page and posts on our Facebook page sharing details of research studies that need parent involvement. It’s fantastic that many bereaved parents want to support research, and we know that research teams rely on and hugely appreciate parents’ interest and participation.
The research we support will increase our understanding of the issues around baby death, and help us create a world where fewer babies die, and that when a baby does die, anyone affected by the death receives the best care and support when they need it, for as long as they need it.