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

COMMEND Collaboration Group; Charlotte Rawlinson; Rebecca L. Gould; Christopher J. McDermott; Ben Thompson; Kirsty Weeks; Rebecca Gossage-Worrall; Marc A. Serfaty; Christopher D. Graham; Lance McCracken; David White; Robert J. Howard; Ammar Al-Chalabi; Laura H. Goldstein; Richard W. Orrell; Suresh K. Chhetri; Rupert Noad; Aleksandar Radunovic; Tim Williams; Carolyn A. Young; Matt Bursnall; Mike Bradburn; Tracey Young; John Ealing; Hamish McLeod; Helen Weatherly; Richard Cave; Francesco Pagnini; Cindy Cooper; Pamela J. Shaw; Vanessa Lawrence; Vanessa Lawrence

doi:10.1017/S1754470X24000333

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

COMMEND Collaboration Group, Charlotte Rawlinson, Rebecca L. Gould^*, Christopher J. McDermott, Ben Thompson, Kirsty Weeks, Rebecca Gossage-Worrall, Marc A. Serfaty, Christopher D. Graham, Lance McCracken, David White, Robert J. Howard, Ammar Al-Chalabi, Laura H. Goldstein, Richard W. Orrell, Suresh K. Chhetri, Rupert Noad, Aleksandar Radunovic, Tim Williams, Carolyn A. YoungMatt Bursnall, Mike Bradburn, Tracey Young, John Ealing, Hamish McLeod, Helen Weatherly, Richard Cave, Francesco Pagnini, Cindy Cooper, Pamela J. Shaw, Vanessa Lawrence, Vanessa Lawrence

^*Corresponding author for this work

Psychology

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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.

Original language	English
Article number	e36
Number of pages	28
Journal	Cognitive Behaviour Therapist
Volume	17
DOIs	https://doi.org/10.1017/S1754470X24000333
Publication status	Published - 4 Nov 2024

Funding

This work was supported by the National Institute for Health and Care Research (NIHR) Health Technology Assessment Programme (grant number: 16/81/01) and the Motor Neurone Disease Association (grant number: Gould/Jul17/936-794).

Keywords

Motor neuron disease
Acceptance and Commitment Therapy
qualitative
acceptability

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Rawlinson-etal-CBT-Experiences-of-acceptance-and-commitment-therapy-for-people-living-with-motor-neuron-diseaseFinal published version, 413 KBLicence: CC BY 4.0

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COMMEND Collaboration Group, Rawlinson, C., Gould, R. L., McDermott, C. J., Thompson, B., Weeks, K., Gossage-Worrall, R., Serfaty, M. A., Graham, C. D., McCracken, L., White, D., Howard, R. J., Al-Chalabi, A., Goldstein, L. H., Orrell, R. W., Chhetri, S. K., Noad, R., Radunovic, A., Williams, T., ... Lawrence, V. (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, Article e36. https://doi.org/10.1017/S1754470X24000333

@article{1f620cbe6c3b4b41b81b7f68dc8ef0ca,

title = "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",

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{\textquoteright}s experiences of receiving adapted ACT, tailored to their specific needs, and therapists{\textquoteright} 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.",

keywords = "Motor neuron disease, Acceptance and Commitment Therapy, qualitative, acceptability",

author = "{COMMEND Collaboration Group} and Charlotte Rawlinson and Gould, {Rebecca L.} and McDermott, {Christopher J.} and Ben Thompson and Kirsty Weeks and Rebecca Gossage-Worrall and Serfaty, {Marc A.} and Graham, {Christopher D.} and Lance McCracken and David White and Howard, {Robert J.} and Ammar Al-Chalabi and Goldstein, {Laura H.} and Orrell, {Richard W.} and Chhetri, {Suresh K.} and Rupert Noad and Aleksandar Radunovic and Tim Williams and Young, {Carolyn A.} and Matt Bursnall and Mike Bradburn and Tracey Young and John Ealing and Hamish McLeod and Helen Weatherly and Richard Cave and Francesco Pagnini and Cindy Cooper and Shaw, {Pamela J.} and Vanessa Lawrence and Vanessa Lawrence",

year = "2024",

month = nov,

day = "4",

doi = "10.1017/S1754470X24000333",

language = "English",

volume = "17",

}

COMMEND Collaboration Group, 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 & Lawrence, V 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, vol. 17, e36. https://doi.org/10.1017/S1754470X24000333

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. / COMMEND Collaboration Group; Rawlinson, Charlotte; Gould, Rebecca L. et al.
In: Cognitive Behaviour Therapist, Vol. 17, e36, 04.11.2024.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Experiences of acceptance and commitment therapy for people living with motor neuron disease (MND)

T2 - a qualitative study from the perspective of people living with MND and therapists

AU - COMMEND Collaboration Group

AU - Rawlinson, Charlotte

AU - Gould, Rebecca L.

AU - McDermott, Christopher J.

AU - Thompson, Ben

AU - Weeks, Kirsty

AU - Gossage-Worrall, Rebecca

AU - Serfaty, Marc A.

AU - Graham, Christopher D.

AU - McCracken, Lance

AU - White, David

AU - Howard, Robert J.

AU - Al-Chalabi, Ammar

AU - Goldstein, Laura H.

AU - Orrell, Richard W.

AU - Chhetri, Suresh K.

AU - Noad, Rupert

AU - Radunovic, Aleksandar

AU - Williams, Tim

AU - Young, Carolyn A.

AU - Bursnall, Matt

AU - Bradburn, Mike

AU - Young, Tracey

AU - Ealing, John

AU - McLeod, Hamish

AU - Weatherly, Helen

AU - Cave, Richard

AU - Pagnini, Francesco

AU - Cooper, Cindy

AU - Shaw, Pamela J.

AU - Lawrence, Vanessa

PY - 2024/11/4

Y1 - 2024/11/4

N2 - 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.

AB - 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.

KW - Motor neuron disease

KW - Acceptance and Commitment Therapy

KW - qualitative

KW - acceptability

UR - https://www.cambridge.org/core/journals/the-cognitive-behaviour-therapist

U2 - 10.1017/S1754470X24000333

DO - 10.1017/S1754470X24000333

M3 - Article

VL - 17

JO - Cognitive Behaviour Therapist

JF - Cognitive Behaviour Therapist

M1 - e36

ER -

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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