People spend much of their last year at home and many would like to die there, yet research shows many gaps in current community provision. The need to involve users in research and service development is now well recognised. Through an innovative approach this study brings these strands together in a study that formally involves patients and carers in the development and evaluation of a primary care based framework of care.
Aims: to integrate the perspectives of patients with cancer and their carers in the design and evaluation of a framework to support the delivery of proactive, co-ordinated cancer care in primary care; to assess the feasibility of such user involvement.
Methods: This paper covers the first stage of the study, which established two on-going user groups and held interviews with 16 key professionals. The groups and interviews were taped, transcribed and analysed with the aid of NVivo. The analysis was concurrent so that emerging themes could be developed in later work. Findings: The user groups highlighted 5 key times on the cancer journey [around diagnosis, during treatment, post discharge, recurrence, last weeks] and 4 major issues [information, communication, equity, holism] which they wished to see adressed in the framework. Professionals varied in their support for such a framework and highlighted challenges in implementing it.
Conclusions: This method successfully brought patient, carer and professional perspectives to the development of a framework of care. The group members highlighted areas of concern which might otherwise have been missed, and developed concrete proposals for integrating them into the framework in ways acceptable to patients, carers and professionals. The framework is now ready for evaluation.