Terminally ill patients' and lay-carers' perceptions and experiences of community-based services

This paper reports on terminally ill patients' and their lay-carers' perceptions and experiences of community-based services. It forms part of a larger investigation which examined the extent of service provision and any perceived gaps and problems from the perspectives of both clients and providers of community-based assistance for the terminally ill. The participants were nine terminally ill patients and 12 lay-carers receiving community nursing care. Fifteen face-to-face, semi-structured interviews were conducted to elicit their experiences and perceptions of the care being provided. Qualitative, thematic analysis was carried out on the audio-taped interviews. On the whole, respondents reported a high level of satisfaction and appreciation for the help provided. Several areas appeared more problematic, however, and warrant further consideration. These include perceptions of health professionals, particularly their role domains, power and expertise, and some of the practical disadvantages and problems faced by some patients and their families. These are illustrated and the implications for dying patients, their lay-carers and community-based health professionals are discussed.