Biomedical subjects

J Skilbeck

Publications and source records attributed to J Skilbeck.

3 recordsLinked to original sources

PubMed2002

Ethical considerations in researching user views.

Researching user views has become a central plank of UK cancer and palliative care policy, not least because it is recognized that current systems for treatment reflect inadequately the experiences and concerns of cancer patients. This paper examines the process of accessing user views about cancer and palliative care from an ethical perspective, drawing by way of example on a study of outcomes associated with Macmillan nursing. A moral theory framework is used to discuss some of the issues involved in trying to achieve ethically sound practice and some essentially political issues that frame the process of accessing users' views are highlighted. The paper recommends that models of research be developed for accessing user views that are congruent with the values and philosophies of supportive and palliative care. This requires striking a fine balance between the ethical duties of providing care and support, nurturing independence and autonomy, and achieving research outcomes that are rigorous while also being accessible and meaningful to users. It also requires developing an understanding of the social, political and economic context of research enquiry with users.

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PubMed2001

Needs assessment for palliative care: three projects compared.

Needs assessment remains an inexact yet evolving field of activity in palliative care. One reason for the variable quality of needs assessments in palliative care is the pragmatic orientation that comes from limited time and resources. Consequently a comprehensive approach to palliative care needs assessment is often not achieved. One route to its improvement lies in sharing experiences about techniques and methods in conducting needs assessment studies. In this paper we offer some thoughts on our own experience of conducting needs assessment for palliative care in three separate locations within a single English health region. We describe the context in which the projects were conducted; the background and origin of each study; the aims and methods used; the research process in each case; key findings; as well as the dissemination process and impact of the work. We show some of the different forms which palliative care needs assessment can take and conclude with some general principles intended to improve practice in this challenging area of health services research.

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PubMed1998

Palliative care in chronic obstructive airways disease: a needs assessment.

The view that palliative care should move beyond cancer is widely endorsed, however, there remains a lack of clarity about the level at which this should occur. In order to target the palliative approach effectively, the value of more detailed and localized needs assessment becomes apparent. This paper provides evidence from a study commissioned by a department of public health, where the focus was the palliative care needs of an individual with chronic obstructive airways disease (COAD). Over a six-month period, 63 individuals in the district were interviewed about their experiences of living with COAD and the services utilized, using a combination of qualitative and quantitative research methods. The findings revealed a poor quality of life, relating to a high degree of social isolation and emotional distress, associated with low physical functioning and disability, and physical symptoms. Current service provision focused on acute exacerbations. Consequently, there is a need to manage the health and social care interface more effectively, with a shift in emphasis from reactive ad hoc provision, which is where the palliative approach to care could be best suited to meet the needs identified.

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