Carers' experience of providing care for people with long term conditions

Background to the Project The Department of Health commissioned a brief scoping study be carried out in order amass evidence concerning people with long term conditions’ use of health and social care services. This report covers a related study that examined literature containing evidence on informal carer’s experiences of providing care to people within the target groups. The service users in the target group were of working age only (18-65) and the target conditions were epilepsy, Multiple Sclerosis (MS), Motor Neurone Disease (MND), Parkinson’s disease, brain injury, spinal cord injury, polio and cerebral palsy.

Aims and Objectives The study aimed to provide an overview of the types of evidence that exist on carer’s experience of caring for a person with a long term condition and negotiating with health and social care services as part of this role. The brief was to illuminate the experience of providing care to people in the target groups. The primary purpose of the study was to gather evidence on carer’s experiences to underpin other review work being undertaken for the Department of Health. The main objective of the study was to identify the key studies on carers’ experience of the provision of care for each of the target long-term conditions. Methods The study relied on a ‘hub and spoke’ method of reviewing and compiling evidence. The part time research co-ordinator was responsible for identifying key studies in this field. These studies were routed to a panel of expert readers for assessment. The latter used a standard proforma to record their assessments. In the final stages of the project the proformas formed the basis of the draft report.