The views of terminally ill people and lay carers on primary care services

Abstract

Although there has been a proliferation of specialist services to manage specific diseases and conditions, the majority of people with a terminal illness are cared for in their own homes by generalist practitioners. This study, based on interviews with people with a terminal illness (n=15), lay carers (n=10) and bereaved carers (n=19), aimed to establish the abilities of patients, within an activities of daily living framework, and to ascertain views on key health professionals. Results suggested that lay carers played an important role in meeting the needs of patients and had a number of insightful and useful comments to make on service provision, in particular with regard to specialist nursing services. If lay carers are to be engaged as partners in the caring process then more effective communication patterns between generalists, specialists and service users need to be established.