Feasibility, Acceptability, and Potential Effectiveness of Dignity Therapy for People with Motor Neurone Disease

Brenda Bentley,Lauren J Breen,Robert Kane,Moira O'Connor,Kelvin E Jones

doi:10.1371/journal.pone.0096888

Abstract

BackgroundMotor neurone disease (MND) practice guidelines suggest developing interventions that will promote hope, meaning, and dignity to alleviate psychological distress, but very little research has been done. This study begins to address this need by exploring the use of dignity therapy with people with MND. Dignity therapy is a brief psychotherapy that promotes hope, meaning and dignity, and enhances the end of life for people with advanced cancer. The aims of this study are to assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND.Methods/designThis cross-sectional feasibility study used a one-group pre-test post-test design with 29 people diagnosed with MND. Study participants completed the following self-report questionnaires: Herth Hope Index, FACIT-sp, Patient Dignity Inventory, ALS Assessment Questionnaire, ALS Cognitive Behavioural Screen, and a demographic and health history questionnaire. Acceptability was measured with a 25-item feedback questionnaire. Feasibility was assessed by examining the length of time taken to complete dignity therapy and how symptoms common in MND affected the intervention. Generalised linear mixed models and reliable change scores were used to analyse the data.ResultsThere were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness on the individual level. The results of the feedback questionnaire indicates dignity therapy is highly acceptable to people with MND, who report benefits similar to those in the international randomised controlled trial on dignity therapy, a population who primarily had end-stage cancer. Benefits include better family relationships, improved sense of self and greater acceptance. Dignity therapy with people with MND is feasible if the therapist can overcome time and communication difficulties.ConclusionsDignity therapy for people with MND is feasible and acceptable. Further research is warranted to explore its ability to diminish distress.Trial Registration www.anzctr.org.au ACTRN12611000410954

Highlights

Motor neurone disease (MND), known as amyotrophic lateral sclerosis, is an uncommon neurodegenerative disease that is progressive and always fatal
The results of the feedback questionnaire indicates dignity therapy is highly acceptable to people with MND, who report benefits similar to those in the international randomised controlled trial on dignity therapy, a population who primarily had end-stage cancer
Dignity therapy with people with MND is feasible if the therapist can overcome time and communication difficulties

Summary

Introduction

Motor neurone disease (MND), known as amyotrophic lateral sclerosis, is an uncommon neurodegenerative disease that is progressive and always fatal. Hopelessness is correlated with interest in hastened death [3,9,10] Among those with terminal diagnoses, people with MND report the highest levels of interest in hastened death [11] and they have the greatest risk of suicide [12]. These effects are mitigated in people who report higher levels of spirituality and sense of meaning [13,14]. Motor neurone disease (MND) practice guidelines suggest developing interventions that will promote hope, meaning, and dignity to alleviate psychological distress, but very little research has been done. The aims of this study are to assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND

Methods

Results

Conclusion