"Policy aspirations about training need to recognise this. Recent media criticism of palliative care pathways (Torjesen 2013) highlights the fear and risks that were evident in the interviews, but our data suggest that these also reflect general discomfort with services and systems, and are not simply about uncertainty related to prognosis as suggested by the research literature (Sachs et al. 2004, Birch & Draper 2008). While there is a growing body of research identifying the challenges to providing good care for a person with dementia, there is also a need for research to identify the characteristics of the practitioners, care settings and wider support systems that facilitate this. "
[Show abstract][Hide abstract] ABSTRACT: Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews (n = 7 and n = 6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway.
Health & Social Care in the Community 12/2013; 22(4). DOI:10.1111/hsc.12094 · 1.15 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Background:Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice.Aim:To explore public perceptions of palliative care and identify strategies to raise awareness.Design:An exploratory qualitative approach.Participants:Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed.Results:Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant's expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies.Conclusion:Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.
Palliative Medicine 09/2013; 28(3). DOI:10.1177/0269216313502372 · 2.86 Impact Factor
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