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

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Rawlinson, Charlotte and Gould, Rebecca L. and McDermott, Christopher J. and Thompson, Ben and Weeks, Kirsty and Gossage-Worrall, Rebecca and Serfaty, Marc A. and Graham, Christopher D. and McCracken, Lance and White, David and Howard, Robert J. and Al-Chalabi, Ammar and Goldstein, Laura H. and Orrell, Richard W. and Chhetri, Suresh K. and Noad, Rupert and Radunovic, Aleksandar and Williams, Tim and Young, Carolyn A. and Bursnall, Matt and Bradburn, Mike and Young, Tracey and Ealing, John and McLeod, Hamish and Weatherly, Helen and Cave, Richard and Pagnini, Francesco and Cooper, Cindy and Shaw, Pamela J. and Lawrence, Vanessa and Lawrence, Vanessa, COMMEND Collaboration Group (2024) 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. Cognitive Behaviour Therapist, 17. e36. ISSN 1754-470X (https://doi.org/10.1017/S1754470X24000333)

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Abstract

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.

ORCID iDs

Rawlinson, Charlotte, Gould, Rebecca L., McDermott, Christopher J., Thompson, Ben, Weeks, Kirsty, Gossage-Worrall, Rebecca, Serfaty, Marc A., Graham, Christopher D. ORCID logoORCID: https://orcid.org/0000-0001-8456-9154, McCracken, Lance, White, David, Howard, Robert J., Al-Chalabi, Ammar, Goldstein, Laura H., Orrell, Richard W., Chhetri, Suresh K., Noad, Rupert, Radunovic, Aleksandar, Williams, Tim, Young, Carolyn A., Bursnall, Matt, Bradburn, Mike, Young, Tracey, Ealing, John, McLeod, Hamish, Weatherly, Helen, Cave, Richard, Pagnini, Francesco, Cooper, Cindy, Shaw, Pamela J., Lawrence, Vanessa and Lawrence, Vanessa;
CORE (COnnecting REpositories)