Libby Sallnow is a clinician and doctoral researcher at St Joseph’s Hospice, London, and the University of Edinburgh, Scotland, UK. Here, she explains the background to her longer research article selected as ‘Editor’s choice’ in the March issue of Palliative Medicine.
Public health or community development approaches to health care have been practised since the 1980s. More recently, attention on them has increased as evidence has emerged of the power they have to influence a wide range of outcomes. These include wellbeing, mortality and health service usage. We have been relatively slow to harness the energy that these approaches bring in end-of-life care. This is despite the fact that many early palliative care services were formed by groups of committed volunteers, reflecting their interest to engage in a solution around better care, a perceived need for something different to that provided by statutory services, and their ongoing support of hospices through the gifts of time and money.
That early failure to engage in these approaches is now being redressed. Today, there are a growing number of ‘compassionate communities’ projects throughout the world and the language and principles of new public health have crept into policy and strategy documents. An international conference series and a new global association exist, and increasing numbers of articles and books support this burgeoning field.
Although this is a rapidly expanding area, we recognised that evidence to support the impact of this work was not evolving at the same rate, despite anecdotal reports of impressive outcomes in service evaluations and audits. This prompted us to ask the question: What evidence exists for these approaches and what does it tell us?
Research in this field is difficult. The evaluation of health promotion or community development initiatives is notorious for the challenges posed, such as long time frames, unanticipated outcomes and beneficiaries, the need to measure complex outcomes such as social capital, wellbeing and resilience. The fact that the research occurs in the context of end-of-life care adds further complexities. Nonetheless, during the research process we were surprised at the innovative methods authors had used to capture these insights and, as a result, what interesting insights had been gained.
I think one of the most interesting aspects of the results of this paper is the way that the quantitative and qualitative findings map to each other and lend different perspectives. The positive impact on family carers, ranging from decreased fatigue to increased confidence is a strong theme; similarly, the impact on volunteers or community members who offer care and support, whose experience can be transformative. Evidence of ‘harder’ outcomes also exists – home death rates and rates of involvement of palliative care services are higher when a caring network involves friends as well as immediate family.
An important voice that is silent in this research is that of the dying individual. This is true for much research in end-of-life care but is an essential perspective to understand as this work proceeds, as is an understanding how outcomes of new public health projects can vary between models and approaches. In the meantime, this review offers some new clarity about the potential impact of this approach, which can be used to underpin future evaluation studies, new practice examples and professional reflection on how this work can run alongside and support clinical work.
Red the full article in ‘Palliative Medicine’
This blog post relates to the longer article, ‘The impact of a new public health approach to end-of-life care: A systematic review’ by Libby Sallnow, Heather Richardson, Scott A Murray and Allan Kellehear, published in Palliative Medicine March 2016 vol. 30 (3): 200-11. Epub 2015 Aug 12, doi: 10.1177/0269216315599869.
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Links and resources
- Public health approaches to end-of-life care: A toolkit (Public Health England and National Council for Palliative Care). (Accessed 22 February 2016).
- Public Health Palliative Care International
- 5th International conference: 18-20 September 2017, Ottawa, Ontario, Canada – plans are under way. Save the date!
- Sallnow, L. Kumar, S. and Kellehear, A. (eds.) (2012). International Perspectives in Public Health and Palliative Care.Abingdon, Routledge.
- Wegleitner K, Heimerl K, Kellehear A (eds.) (2015) Compassionate communities: case studies from Britain and Europe. Abingdon, Routledge.
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