Who cares? A prospective study to develop an alert system for informal carers

Background Informal family carers have vital roles caring for patients with cancer and advanced progressive illness, especially during the final year of life, which can incur an increasing burden compromising their physical and psychological health. Understanding how to prevent these stresses is vital to meeting the increasing demands for home-based care and to prevent inappropriate hospital admission of patients. Carers require regular assessment to alert health and social care professionals to their increasing level of burden and to trigger additional support. Aim The project has four phases which will culminate in the development and evaluation of an assessment thermometer to assess carers' needs. The thermometer will act as an alert indicator to the increasing burden experienced by carers in order to trigger referral of carers to appropriate support or services. Method The first phase of the project is an interview and focus group study with carers in Northwest England. Interviews will be conducted with carers who are currently supporting patients registered on the Gold Standard Framework or palliative care registers held by general practices in order to gather prospective data about carers' experiences and needs. These interviews will be conducted longitudinally where possible in order to capture the changing needs of the carers during the last 12 months of the patient's life. The focus groups will involve current and bereaved carers to capture a broader perspective on the issues faced. Resultsand conclusions The main themes identified from the interview and focus group study with carers will be presented, along with a discussion of the future development of the assessment thermometer.