Who are we?
We have a core membership of families and researchers who develop research skills and drive new projects as well as a wider network who contribute in different capacities and in different ways according to their interests and skills.
The core group is made up of:
- Jill Bradshaw: Researcher, Tizard Centre
- Jo Griffin: Family carer
- Keith Wyncoll: Family carer
- Nick Gore: Researcher, Tizard Centre
- Pathekile Nekati: Family carer
- Rasha Hafidh: Family carer
- Vivien Cooper: Chief Executive of the CBF and family carer
- Mary Spence: Policy Officer, the CBF
- Siobhan Humphreys: Research Assistant, the CBF
Why do we need this group?
We believe that parents, grandparents, siblings and other family members:
- Are uniquely placed to offer insight into the needs and experiences of their relative and likely to be sensitive to the needs of other family carers.
- Often experience particular needs and challenges themselves.
- May have developed unique skills, insights and expertise through their role as a carer.
- Are highly motivated to bring about positive changes for people with disabilities and their families
However, Family Carers of people with learning or developmental disabilities are often only partially represented in research, if at all. They are an under-utilised and under-supported group who may experience frustration at the gap between research, policy and lived experience.
Our values – diversity and inclusion
Our core values include flexibility, inclusivity and the importance of co-production, recognising the often under-utilised resources family carers bring to research and their unique perspectives. We embrace diversity and wish to ensure we represent the needs of everyone including different roles, backgrounds, experiences and expertise.
What do we hope to achieve?
By working together we believe we can ensure research and other related projects are meaningful, practical and of high quality. By increasing knowledge and active participation in research we as a group can:
- Ensure research is of relevance to peoples’ lived experience
- Empower family carers in their role as an ‘Expert by Experience’
- Bring about positive and meaningful social change
How do we work together?
The Core group meets regularly to discuss issues regarding relevant research – new, ongoing and published. We consider how to publicise research in a way that reaches families as well as bringing researchers into the group to discuss particular pieces of research.
How you can get involved
We are setting up a wider Research Network where carers can contribute on an ad hoc basis. This may be in different ways:
- Highlighting a need for further research in a particular area by letting researchers know
- Raising awareness of research or projects that are taking place that would be of interest to the wider family carer community
- Being consulted on your views on research currently underway to ensure it is more family orientated and grounded in lived experience
- Promoting research projects that may wish to get involved with or link up to the Research Group’s work
- Assist with funding or grant applications e.g. by providing case studies.
Being part of the network will allow you flexibility to decide when you wish to be involved as we acknowledge many Family Carers are already overburdened. You will be in control of your level of input.
Signing up will involve receiving:
- A periodic email update of the work of the group (max. 4 times per year)
- Notifications of research projects on an ad hoc basis and the option to opt in or out of providing input
- Direct access to researchers to influence their work
If you’d like to find out more please email Mary at the CBF: firstname.lastname@example.org