The role of young people, parents and families in research

Young people, parents, and families have crucial role to play in supporting research into improving children’s palliative care and support. If you are a young person, a parent, or a family member, this resource aims to provide you with the necessary information to become actively engaged in research. If you are looking for information or support with care for your child, please visit the family support hub area of our site.

If you’d like to get involved in taking part in research, there are two key ways of getting involved: you can take part as a research participant, or you can engage in what is known as ‘patient and public involvement’.

Taking part in research as a research participant

You may have been contacted or may be contacted in the future to take part in research as a participant. Taking part in research as a participant might mean offering your experiences as part of an interview, completing a survey or questionnaire, or consenting for your child to be part of a clinical trial. You can find out more about what is involved in taking part in research here.

If you are interested in finding opportunities to become a research participant, you can sign up to become a Together for Short Lives ‘Family Expert’ and we will share opportunities to take part in research by email as and when they come up.

Becoming involved in patient and public involvement activities

As a young person, parent, or family member, you have key expertise and experience that are vital to informing and shaping research. One of the ways that you can share your expertise and experiences is by taking part in patient and public involvement activity or ‘PPI’. PPI is about ensuring young people, parents and families are actively included and part of the research process, including being involved in discussions and decisions where possible in the development, running, and management of research studies and activities. You can find out more about PPI here.

Find out more

Taking the step to become involved in PPI might feel a bit daunting. It may be helpful to hear from young people and parents who have experience of PPI. The below videos are from young people and parents who have contributed to the Martin House Research Centre young person’s and family advisory board.

You can also read accounts of parents who have taken part in PPI in paediatric palliative care research here.

You can find opportunities to take part in PPI by joining our Family Experts group. In addition, if you are a parent carer or family member, People in Research provide a database of opportunities to get involved in research. If you are a young person GenerationR is a National Network of Young People’s Advisory Group’s based across the UK that aims to support the design and delivery of paediatric research in the UK.

This resource is produced by the CoPPAR network funded by the NIHR, you can find out more about CoPPAR here