Tales of the unexpected : involving older carers as co-researchers

Abstract

Campaigning organisations such as Carers UK, Help the Aged and Age Concern have worked tirelessly to ensure that the needs of carers are central to the Government’s emerging political agenda, culminating in the recently published New Deal for Carers strategy (Department of Health, 2007). While older carers - along with younger carers - will benefit from changes to existing funding streams and the creation of new ones, the needs of older carers are particularly challenging and to date they remain relatively under reported in research. Few older carers are involved in research as active partners which means that most of the information available - while essential in its own right – does not provide a personal account of the hidden work and world of older carers. One of the key aims of this study therefore was to develop a participatory methodology capable of involving older carers as co-researchers, in a study that sought to make visible their hidden work and world. Using naturalistic case study, older carers were supported to assume the dual role of research participant and co-researcher. In their role as research participants, older carers kept a research diary for seven days detailing their day-to-day activities. As co-researchers, older carers met together in a series of focus group meetings to carefully examine the contents of the diaries, using the meetings to add reflective notes, stories and anecdotal comments, thereby situating the diaries in their proper social and political context. Older carers identified a number of issues, including living with social exclusion, the importance of money and the difficulty of managing emergency situations – all key issues in the Government’s new strategy for older carers, and they proved that they had the necessary skills, knowledge, motivation and flair to contribute to research and debates of national importance. The complex nature of caring in later life was powerfully illustrated by stories that demonstrated the heroic means by which older carers lived their lives, every single day. In conclusion, this study called for a step change in the number of older people involved in research, planning and service development activities, and an end to the use of passive language when describing the skills, knowledge and experience of older people. It exhorted health and social care professionals to examine their own in-built bias and prejudices, so that fair and just systems of community involvement could be built.