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

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

Dignity, privacy, respect and choice—A scoping review of measurement of these concepts within acute healthcare practice

“…The Patient Dignity Inventory was the most common tool used in the included articles (Table 5). It was used in ten studies (Abbaszadeh, Borhani, & Rabori, 2015; Bentley, O'Connor, Kane, & Breen, 2014; Borhani, Abbaszadeh, & Moosavi, 2014; Chochinov et al, 2016; Hall, Goddard, Martin, Opio, & Speck, 2013; Li, Wang, & Ho, 2018; Oechsle, Wais, Vehling, Bokemeyer, & Mehnert, 2014; Rullán et al, 2015; Sautier, Vehling, & Mehnert, 2014; Vehling & Mehnert, 2014) and translated into and validated in nine languages (Persian, German, Greek, Czech, Italian, Finnish, Hungarian, Spanish and Mandarin). The Caring Behaviors Inventory (CBI) was outlined in four papers (Aupia et al, 2018; He et al, 2013; Papastavrou et al, 2012a; Papastavrou et al, 2012b) (Table 5).…”

A Narrative Review of Dignity Therapy Research

“…One study examined the feasibility of DT for people with motor neurone disease (MND) (Bentley, O'Connor, Kane, & Breen, ). This study conducted DT with 29 individuals diagnosed with MND in Australia.…”

“…Several studies have addressed pragmatic aspects of delivering DT, including time taken, costs expended, and length of documents, but the findings are limited by incomplete information reported in these studies (Hall et al, ; Johns, ; Montross et al, ). Two studies noted that the time required to edit documents may be excessive and problematic for clinical implementation (Hall et al, ; Passik et al, ), one noted that travel time, cancelled appointments, and delays were common issues that compounded the substantial time commitment required by clinicians (Hall et al, ), and another indicated that some physical symptoms increase the time required to complete the therapy (Bentley, O'Connor, Kane, et al, ). All studies thus far indicate that DT is substantially more time consuming to deliver than indicated in Chochinov's training materials, which states the intervention can be completed in 5–6 hr of therapist time (Chochinov, ; Chochinov & McKeen, ).…”

Czech Version of the Patient Dignity Inventory: Translation and Validation in Incurable Patients

“…This instrument can be used as a screening method, not only in clinical practice, but also in research, which focuses on understanding the problems influencing patient dignity in the early and late stages of cancer, 15e19 in terminal stages of noncancer illnesses, and in severe geriatric frailty. 3,20,21…”