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Open Access Study protocol

Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: study overview and protocol

Christine Toye1*, Andrew L Robinson2, Moyez Jiwa3, Sharon Andrews4, Fran McInerney5, Barbara Horner6, Kristi Holloway7 and Brigit Stratton8

Author Affiliations

1 School of Nursing & Midwifery, Curtin Health Innovation Research Institute, Curtin University, GPO BOX U1987, Perth, WA 6845, Australia

2 School of Nursing and Midwifery, University of Tasmania, Private Bag 121 Hobart, Tasmania 7001, Australia

3 Curtin Health Innovation Research Institute, Curtin University, GPO BOX U1987, Perth, WA 6845, Australia

4 Wicking Dementia Research and Education Centre, University of Tasmania, Private Bag 121 Hobart, Tasmania 7001, Australia

5 School of Nursing & Midwifery (Victoria), Faculty of Health Sciences, Australian Catholic University, Locked Bag 4115, Fitzroy MDC, Victoria 3065, Australia

6 Centre for Research on Ageing, Curtin Health Innovation Research Institute, Curtin University, GPO BOX U1987, Perth, WA 6845, Australia

7 Western Australian Centre for Cancer and Palliative Care, Curtin Health Innovation Research Institute, Curtin University, GPO BOX U1987, Perth, WA 6845, Australia

8 Wicking Dementia Research and Education Centre, University of Tasmania, Private Bag 121 Hobart, Tasmania 7001, Australia

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BMC Palliative Care 2012, 11:4  doi:10.1186/1472-684X-11-4

Published: 2 April 2012

Abstract

Background

Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team.

In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations.

Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation.

Methods/design

This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations.

Keywords:
Dementia; Palliative care; Evidence translation; Action research