Work it out for Carers: The Development of a Work-Focused Self-Management Tool for Informal Carers of People Affected by Cancer

Background: A diagnosis of cancer and its treatment can affect the quality of life of family members and other close associates. In particular, it affects the working lives of those who take on the role of an informal caregiver since they regularly provide unpaid practical and emotional support throughout the trajectory of the illness. To help informal caregivers successfully balance their caring and work responsibilities we developed a work-related guidance tool (Work it Out for Carers).

Method: The tool was developed following a systematic three-step process: 1) Determining the content of the tool by conducting interviews with experienced working carers (n = 19) and a review of existing lay literature, 2) Tool design by using the data gathered in step 1 together with a brainstorming exercise with the research team and 3) Tool finalisation by conducting an online evaluation with experienced working carers (n = 13) and employer representatives (n = 17).

Results: The outcome of this three-step process was a self-led, work-focused ‘power questions' tool covering a broad range of issues applicable to those from a variety of occupational backgrounds. Initial feedback suggested that the tool was well received and needed by both informal cancer caregivers and relevant stakeholders.

Conclusions: To date, no interventions have been implemented to help caregivers manage their dual (work and care) responsibilities. Our tool was developed to empower informal cancer carers by: 1) enabling them to identify the impact of caring on work (and vice versa) by posing key questions to relevant stakeholders, 2) assisting them to find solutions to their work and caring-related needs by providing structured guidance and 3) helping them to reduce absence from work by identifying ways in which to manage their work and caring responsibilities. The tool was perceived to be robust, comprehensive, and appropriately designed.  

Research Implications: The three-step mixed methodological process used to develop the tool ensured that it covered a comprehensive range of important situations and issues often faced by informal cancer carers. Such an approach can applied to the development of other tools.

Clinical Implications: The carer's tool enhances the exchange of information and support between informal cancer carers and healthcare professionals and other key stakeholders. This is important since carers often neglect their own needs when providing regular assistance to those with a diagnosis of cancer.

Acknowledgement of Funding: National Cancer Survivorship Initiative (Department of Health and Macmillan Cancer Support)