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Background:

Motor neuron disease (MND) is a progressive, fatal, neurodegenerative condition that affects motor neurons in the brain and spinal cord, resulting in loss of the ability to move, speak, swallow and breathe. Acceptance and commitment therapy (ACT) is an acceptance-based behavioural therapy that may be particularly beneficial for people living with MND (plwMND). This qualitative study aimed to explore plwMND’s experiences of receiving adapted ACT, tailored to their specific needs, and therapists’ experiences of delivering it.

Method:

Semi-structured qualitative interviews were conducted with plwMND who had received up to eight 1:1 sessions of adapted ACT and therapists who had delivered it within an uncontrolled feasibility study. Interviews explored experiences of ACT and how it could be optimised for plwMND. Interviews were audio recorded, transcribed and analysed using framework analysis.

Results:

Participants were 14 plwMND and 11 therapists. Data were coded into four over-arching themes: (i) an appropriate tool to navigate the disease course; (ii) the value of therapy outweighing the challenges; (iii) relevance to the individual; and (iv) involving others. These themes highlighted that ACT was perceived to be acceptable by plwMND and therapists, and many participants reported or anticipated beneficial outcomes in the future, despite some therapeutic challenges. They also highlighted how individual factors can influence experiences of ACT, and the potential benefit of involving others in therapy.

Conclusions:

Qualitative data supported the acceptability of ACT for plwMND. Future research and clinical practice should address expectations and personal relevance of ACT to optimise its delivery to plwMND.

Key learning aims

(1) To understand the views of people living with motor neuron disease (plwMND) and therapists on acceptance and commitment therapy (ACT) for people living with this condition.
(2) To understand the facilitators of and barriers to ACT for plwMND.
(3) To learn whether ACT that has been tailored to meet the specific needs of plwMND needs to be further adapted to potentially increase its acceptability to this population.

Summary

Introduction

This chapter will survey the research underpinning current therapeutic candidates for amyotrophic lateral sclerosis (ALS), hereditary spastic paraplegia (HSP), Kennedy's disease (SBMA) and spinal muscular atrophy (SMA). It will also review the evidence base and rationale for the use of riluzole in ALS, the only disease-modifying agent currently licensed for use in any neurodegenerative disease of the motor neuron. In the absence of effective therapies to slow disease progression, the focus of management must be on symptomatic therapies aimed at improving quality of life. Guidelines for the symptomatic management of ALS have been generated by the American Academy of Neurology (Miller et al., 1999b) and a number of systematic reviews of the symptomatic management of ALS are also available from the Cochrane library – symptomatic therapies will not be further discussed here (Annane et al., 2000; Langmore et al., 2003). In recent years, improvements in materials science, bioinformatics and the development of exciting new techniques in molecular biology have brought about a revolution in the way that therapeutic candidates are selected and tested. The likely impact of these new techniques on drug development for disorders of motor neurons will also be discussed.

Disease modifying therapies for amyotrophic lateral sclerosis

Aims of therapy

Motor neurons are post-mitotic cells, which make numerous, complex synaptic connections. They are found in the motor cortex, the brainstem and along the entire length of the spinal cord.

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Experiences of acceptance and commitment therapy for people living with motor neuron disease (MND): a qualitative study from the perspective of people living with MND and therapists

52 - Current and potential therapeutics in motor neuron diseases

Summary

116 - Motor neuron disease

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3 results

Experiences of acceptance and commitment therapy for people living with motor neuron disease (MND): a qualitative study from the perspective of people living with MND and therapists

52 - Current and potential therapeutics in motor neuron diseases

Summary

116 - Motor neuron disease