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Understanding integrated care pathways in palliative care using realist evaluation: a mixed methods study protocol
  1. Sonia Michelle Dalkin1,
  2. Diana Jones1,
  3. Monique Lhussier1,
  4. Bill Cunningham2
  1. 1School of Health, Community and Education Studies, Northumbria University, Newcastle upon Tyne, UK
  2. 2West Locality Northumberland Clinical Commissioning Group, Tanners Burn House, Hexham, Northumberland, UK
  1. Correspondence to Sonia Michelle Dalkin; sonia.dalkin{at}northumbria.ac.uk

Abstract

Introduction Policy- and evidence-based guidelines have highlighted the need for improved palliative and end-of-life care. However, there is still evidence of individuals dying undignified deaths with little pain control, therefore inflicting unnecessary suffering. New commissioning powers have enabled a 2-year pilot of an innovative integrated care pathway (ICP) designed to improve arrangements for individuals with life-limiting illnesses requiring palliative care. A novel feature of the ICP is its focus on palliative care over the last 6 months of life, aiming to intervene early to prepare for and ensure a good death. What is not known is if this pathway works, how it works and who it works for.

Methods and analysis A realist evaluation and a complex analytical framework will investigate and discover context, mechanism and outcome conjectures and configurations of the ICP and thus facilitate exploration of how it works and who it works for. A mixed methods approach will be used with small sample sizes to capture the breadth of the ICP. Phase 1 will identify if the pathway works through analysis of NHS Morbidity Information Query and Export Syntax data, locality Death Audit data and the Quality of Dying and Death Questionnaire. Phase 2 employs soft systems methodology with data from focus groups with health professionals to identify how the pathway works. Phase 3 uses the Miller Behavioural Style Scale and interviews with palliative care patients and bereaved relatives to analyse communication in palliative care.

Ethics and dissemination Ethical approval has been granted from the NHS local ethics committee (REC reference number: 11/NE/0318). Research & Development approval has been gained from four different trusts, and relevant voluntary organisations and the local council have been informed about the research. This protocol illustrates the complexity inherent in evaluating a palliative care ICP. Identification of whether the pathway works, how it works and who it works for will be beneficial to all practices and other care providers involved as it will give objective data on the impact of the ICP. Results will be disseminated throughout the study for continuous quality improvement of the ICP. Outcomes from each data collection phase will be disseminated separately if analysis warrants it; all data collection will be utilised in the realist evaluation. The research provides a potential for the dissemination of the pathway to other localities through the transferable knowledge it will generate, from its focus on the contexts that are crucial for successful implementation, the mechanisms that facilitate implementation and the outcomes achieved.

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.

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Footnotes

  • To cite: Dalkin SM, Jones D, Lhussier M, et al. Understanding integrated care pathways in palliative care using realist evaluation: a mixed methods study protocol. BMJ Open 2012;2:e001533. doi:10.1136/bmjopen-2012-001533

  • Contributors SMD created the design of the study with supervision and guidance from DJ, ML and BC. SMD produced the draft manuscript, and DJ, ML and BC have revised the manuscript critically for important intellectual content. All authors read and approved the final manuscript.

  • Funding SMD is jointly funded by the Northumbria University and NHS North of Tyne Primary Care Trust. DJ and ML are funded by Northumbria University. BC is a retired general practitioner.

  • Competing interests None.

  • Patient consent All participants in this study will remain anonymous. Their names will not be used and there will be no pictures of them available. A consent form has been signed for participants to agree to take part in the study but only anonymously.

  • Ethics approval Ethics approval was provided by the Newcastle and North Tyneside 1 Research Ethics Committee. REC reference number: 11/NE/0318.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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