Abstract
BackgroundDevelopment 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/designThis 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.DiscussionThis 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 registrationACTRN Trial Number: ACTRN12611000410954
Highlights
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
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
An extensive literature search completed for this study revealed there were no psychosocial interventions designed or tailored to alleviate existential distress and improve the quality of life of persons with MND
Summary
As well as MND practice guidelines, suggest the need to develop and utilize interventions that will support hopefulness, a sense of meaning, and dignity in order to alleviate psychosocial and existential distress in persons with MND [7,8]. This study will determine if dignity therapy is likely to be effective in enhancing the end of life experience for both people with MND and their family carers, if it is acceptable to people with MND and their family carers, and if it is feasible to offer the intervention to this population It will explore what allowances or modifications might need to be made to deliver the intervention to people who are sometimes unable to communicate verbally. This research has implications for psychological and health care professionals who work with people with motor neurone disease and other neurological disorders, as well as those who work in palliative care settings Both are often called on to address the spiritual, existential and psychosocial needs in their patients. All authors made substantial contributions to the critical revision of the article and approved the final content
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