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Lookup NU author(s): Dr Timothy Williams
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© The Author(s), 2024. Published by Cambridge University Press on behalf of British Association for Behavioural and Cognitive Psychotherapies.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.
Author(s): Rawlinson C, Gould RL, McDermott CJ, Thompson B, Weeks K, Gossage-Worrall R, Serfaty MA, Graham CD, Mccracken L, White D, Howard RJ, Al-Chalabi A, Goldstein LH, Orrell RW, Chhetri SK, Noad R, Radunovic A, Williams T, Young CA, Bursnall M, Bradburn M, Young T, Ealing J, Mcleod H, Weatherly H, Cave R, Pagnini F, Cooper C, Shaw PJ, Lawrence V, Burns A, Dancyger C, Dee A, Dick D, Fox V, Henley S, Howell M, Kishita N, Makin S, Mayberry E, Oliver M, Richards A, Robinson E, Tallentire L, Williams N
Publication type: Article
Publication status: Published
Journal: Cognitive Behaviour Therapist
Year: 2024
Volume: 17
Online publication date: 04/11/2024
Acceptance date: 23/08/2024
Date deposited: 06/12/2024
ISSN (electronic): 1754-470X
Publisher: Cambridge University Press
URL: https://doi.org/10.1017/S1754470X24000333
DOI: 10.1017/S1754470X24000333
Data Access Statement: . De-identified datasets will be available upon reasonable request, following publication of the study results. Emails should be sent to the corresponding author, stating the fields required and purpose of the request. Requests will be considered on a case-by-case basis and requestors will be asked to complete a data sharing agreement with the sponsor before data transfer. Data will be retained for 10 years following close of the study, before being destroyed. Data will not be publicly available due to the potential risk of compromising participants’ privacy
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