The study is guided by a Steering Group, and a patient and public involvement (PPI) Advisory Group of young adults and parents, to ensure the research is relevant and well conducted.
We invited individuals with an in-depth knowledge of care for young adults with complex healthcare needs or the provision of respite care/short breaks, for example those with professional roles in commissioning or delivering services, clinical experts, and PPI Advisory Group members to be part of the Steering Group.
The primary purpose of the Steering Group is to advise the review team on all aspects of the systematic review, including the scope of the research, interpretation of results, and dissemination of the research findings. The Steering Group ensure that the systematic review is conducted in a robust and rigorous manner. There are two face-to-face meetings scheduled for 2018/19, and there are opportunities to contribute via email/telephone. The Steering Group is chaired by Dr Katherine Knighting and Chris Browne, a young adult with complex healthcare needs from the PPI Advisory Group.
If you are interested in becoming a member of the Steering Group, please contact Dr Katherine Knighting
PPI Advisory Group (PAG)
Young adults and parents who supported the development of this study have continued working with the team. We invited other young adults with life-limiting conditions/complex physical disability, informal carers, and parents/guardians to join them and become a patient and public involvement (PPI) Advisory Group to help guide the research. The aim of the PAG is to ensure that the voices of those with experience of accessing respite and short break services, or challenges with accessing services, have input into the research process.
Meetings will involve working with other PAG members and people from our research team in an informal and friendly environment. During meetings, we will be interested to find out about how your experiences, knowledge and perspectives can help us to do better research and interpret the findings.
There are two face-to-face meetings scheduled for 2018/19, and we also have an e-PAG group so that people can join our discussion by Skype or telephone when other members meet in person at the University.
You do not need any specific research skills to be a member of the PAG and we welcome young adults and parents/carers with all sorts of experiences of respite and short break care, including not being able to access appropriate care. If you would like to be involved, please contact Dr Katherine Knighting