Chief Investigator - Dr Valerie Shilling
Funder: BSMS Seedcorn Fund
A series of public consultation events held in 2026 in person and online explored the support services available to and used by informal cancer caregivers. These discussion were intended to better understand what research is needed and to help us design research projects that:
- Address the questions most important to caregivers
- Are designed using methods and approaches that are acceptable to caregivers
Consultation events
Events were promoted through a number of charities. We ran one in person and three online discussion groups and one in person and four online one to one discussions. We also received written contributions from two people.
Participants were invited to share their thoughts on several topics:
- What types of support for caregivers they are aware of and what they have accessed
- What types of support for caregivers is needed
- What the barriers and enablers to people seeking and accessing support might be
- What are important areas for research and why these are priorities
In the groups and some one-to-one discussions, we also presented a project we already have in mind and asked for feedback on the idea for the research and the methods we were planning to use.
Key findings
- Informal caregivers are time poor and may not have the mental energy to think about seeking support for themselves
- Knowledge about what support services are available is patchy, signposting to appropriate services is needed to reduce the burden. Someone to navigate and signpost to appropriate services was the most requested support need
- The type of support preference will vary by individual caregiver. Some will need deeper, professional guidance other will take more comfort in the shared experience of peer support
- A key barrier to accessing support is not knowing what is available, but many caregivers also say they feel guilty about seeking support for themselves
- Participants were supportive of a project proposed by the researchers around inequalities in support service provision. The priority topic most frequently suggested by participants themselves was research to inform workplace policy
- When designing research for caregivers it is important to:
- Minimise burden and maximise flexibility
- Choose methods that are emotionally and practically accessible
- Clearly communicate the purpose and impact - knowing the future benefit of the research will help caregivers find time to participate
Next steps
Participants identified a number of priority areas for research. We will review the existing evidence around these areas to see if there is a research gap which could be developed into an application for funding. We'll then look to identify potential funders and consult further with caregivers on topic and funder selection. Caregivers will be invited to be co-applicant on any funding application that is developed.