Objectives/purpose: Billions of people across the world provide informal care to loved ones; given current estimates that 1 in 2 people will develop cancer in their lifetime, the number of caregivers with cancer is likely significant. Building on our previous qualitative research, this study aimed to produce a co-designed toolkit for use by Health and Social Care Professionals (HSCPs) in supporting caregivers with cancer.
Sample and setting: Development of the toolkit was achieved using Experience-Based Co-Design methodology. Participants included in the co-design process included caregivers with cancer, HSCPs, and third-sector cancer support organisations.
Procedures: Initial ideas for the toolkit were derived from our previous qualitative work. These were then developed across six co-design workshops, three with caregivers with cancer (n=10) and three with HSCPs (n=8). Following re-design, four iterative consensus events with key stakeholders (n=23) enabled final refinement of the revised toolkit.
Results: The prototype toolkit provides information to help raise awareness of the specific needs and challenges experienced by caregivers with cancer as they navigate their caregiving role alongside their own treatment. This includes challenges relating to: identity; emotional wellbeing; changing roles; experiencing dyadic illness; loneliness; family impact; and, finding new perspectives.
The toolkit offers advice about identifying caregivers, including questions to ask about their caregiving roles. There are case-study examples to exemplify the unique needs of this population, and signposting to appropriate support. We also include awareness-raising posters for hospital waiting rooms, and some take-away information for caregivers.
Conclusion and clinical implications: The resultant toolkit was well-received by our stakeholder groups and is now ready for feasibility, usability, and implementation testing. With further testing we hope to demonstrate that our toolkit improves awareness, communication, and to the support provided to caregivers with a cancer diagnosis.