Mcilfatrick, S.

Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Aim.  This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers.

The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community.

Interest in the concerns of cancer patients’ carers has been growing steadily over the last decade reflected in key cancer service policy documents [DOH, 1995. A Policy Framework for Commissioning Cancer Services (Calman-Hine Report). London, HMSO; DOH, 2002. The NHS Cancer Plan]. Despite this acknowledgement, it can be argued that less is known about carers’ experience in the cancer treatment context. Carers can be defined as someone who shares the experience of cancer with the patient.