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Open Access Study protocol

Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?

Brenda Bentley1*, Samar M Aoun1, Moira O’Connor1, Lauren J Breen2 and Harvey Max Chochinov3

Author Affiliations

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

2 School of Psychology and Speech Pathology, Curtin Health Innovation Research Institute, Curtin University, Perth, Australia

3 Manitoba Palliative Care Research Unit, Department of Psychiatry, University of Manitoba, Winnipeg, Canada

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BMC Palliative Care 2012, 11:18  doi:10.1186/1472-684X-11-18

Published: 20 September 2012

Abstract

Background

Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.

Methods/design

This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.

Discussion

This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.

Trial registration

ACTRN Trial Number: ACTRN12611000410954

Keywords:
Motor neurone disease; Amyotrophic lateral sclerosis; Palliative care; Existential distress; Family carers; Dignity therapy