Parents and Carers

We know the impact young people’s involvement can have on the design and delivery of paediatric health research.  But it is also important to listen to parent’s and carers views and opinions.

We want to involve parents and carers in learning about and designing health research.  The aim is to improve health care by improving the way we research it.

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Parent and Carer Research Forums

In February 2018 Alder Hey Clinical Research Facility (CRF) in Liverpool set up a Parent and Carer Research Forum to support the design and delivery of clinical trials involving children and adolescents suffering with chronic and long-term conditions.  Parents and carers were invited to be part of a forum to support a variety of studies being undertaken within Alder Hey CRF and across the UK and Europe.

Role of the forum

The Forum will work alongside researchers to improve resources and play an integral role in the development of a wide range of paediatric studies. The roles will include:

  • Commenting on research studies giving comments and advice from a parent/carer perspective
  • Providing input into focus groups when required
  • Designing patient information sheets to be used by families
  • Commenting on data analysis and assist with the dissemination of the research project findings to relevant stakeholders including parents, young people, and clinicians
  • Members may be asked to attend other meetings as co-applicants with researchers to assist specific studies
  • Members may be asked to attend conferences, workshops and other events to promote the work of the group
  • Members may be involved with social media groups to support and promote the work of the group.

Members of the forum will receive relevant training to support them in their role.

If you are a parent or carer of a child with a long-term chronic condition and would like to join the forum read the Terms of Reference.  If you can’t join us at our face to face meetings you can join virtually (through our closed Facebook page).  Please complete the expression of interest form and someone will contact you to discuss further.

For further information contact info@generationr.org.uk