Qualitative Lead(s)
Professor Vanessa Lawrence
Project Lead & Team
Chief Investigator: Dr Rebecca Gould (UCL)
The multidisciplinary collaboration included psychologists, neurologists, trialists, statisticians, health economists, speech and language specialists, and a Patient–Caregiver Advisory Group comprising people living with MND and family carers.
Project Dates
2018–2024
Funding Source(s)
NIHR Health Technology Assessment Programme (HTA 16/81/01) and Motor Neurone Disease Association
Qualitative Design used
- Qualitative Research in Trials
- Evaluating Services and Interventions
- Developing and Adapting Interventions
Field of Research
Motor neurone disease; psychological therapies; palliative and neurodegenerative conditions; quality of life; intervention development
Geographic/Contextual Setting
Multicentre UK MND Care Centres and community settings, including home-based therapy delivery.
Acceptance and Commitment Therapy for Improving Psychological Health in People with Motor Neurone Disease
COMMEND was a multi-phase NIHR HTA programme investigating the acceptability and effectiveness of an adapted Acceptance and Commitment Therapy (ACT) intervention for people living with motor neurone disease (MND). Qualitative research formed a central component across all phases of the study. In the initial development phase, workshops and interviews with people living with MND, caregivers, and therapists were used to inform the adaptation of ACT to the specific clinical, communicative, and psychosocial needs of this population, leading to the development of a therapist manual and patient materials.
In the subsequent adaptation phase, qualitative interviews with intervention participants and therapists explored experiences of therapy delivery and engagement after several sessions of ACT. Findings were iteratively fed back into refinement of intervention materials and therapist guidance prior to evaluation in a multicentre randomised controlled trial. By grounding intervention development in the lived experiences and preferences of people with MND and those delivering care, the study optimised intervention acceptability, feasibility, and relevance while generating robust evidence regarding its clinical effectiveness.
Qualitative Approach and Methods
Aim of the qualitative component
To adapt Acceptance and Commitment Therapy (ACT) for people living with motor neurone disease, and to explore the acceptability, feasibility, and experiences of delivering and receiving the intervention.
Qualitative methodology
Person-based intervention development using the framework approach within a multi-phase intervention research programme.
Which qualitative methods were used?
- Individual interviews with people living with MND receiving ACT.
- Individual interviews with therapists delivering the intervention.
- Workshops and consultation exercises with therapists and clinicians.
- Patient–Caregiver Advisory Group input throughout design, interpretation, and dissemination.
Sampling & recruitment
Participants were purposively sampled from feasibility and trial cohorts across multiple UK MND centres to capture variation in disease stage, communication ability, psychological distress, and therapy engagement. Therapists delivering ACT across participating sites were also interviewed to capture implementation experiences.
Data analysis: how the team made sense of the data
Interview data were analysed using the framework approach, with attention to therapy relevance, accessibility, communication adaptations, caregiver involvement, and perceived therapeutic mechanisms. Findings were iteratively incorporated into intervention manuals, therapist training, and delivery guidance.
Findings, Learning & Impact
Summary of main findings
Qualitative findings demonstrated that adapted ACT was experienced as a meaningful framework for helping people navigate the psychological and existential challenges associated with progressive neurological illness. Participants emphasised the importance of flexible delivery, personalised pacing, and therapist sensitivity to communication and physical limitations. Therapist interviews highlighted practical challenges of delivering structured therapy within rapidly changing health circumstances and emphasised the value of adaptable intervention materials.
Why were qualitative methods used in this project, and what did they enable?
Qualitative research was essential to ensure the intervention was grounded in the lived realities of people with MND and deliverable within multidisciplinary clinical services. It enabled the research team to:
- Adapt therapy content and delivery to communication and mobility needs.
- Identify relational and contextual factors shaping engagement.
- Refine intervention manuals and therapist training.
- Inform implementation considerations.
Lessons learnt / reflections?
- Intervention development for progressive neurological conditions requires iterative qualitative input to remain responsive to changing needs.
- Flexibility and personalisation are central to psychological therapy delivery in life-limiting illness contexts.
- Embedding qualitative research across intervention phases strengthens both acceptability and implementation relevance.
Impact & influence
The qualitative programme directly shaped the final ACT intervention tested in the COMMEND trial and informed therapist training and delivery guidance. The subsequent multicentre randomised controlled trial demonstrated clinically meaningful improvements in quality of life, providing rare large-scale evidence supporting psychological interventions for people living with motor neurone disease.
Links, Outputs & Resources
Links to publications
- Gould, R. L., McDermott, C. J., Thompson, B. J., Rawlinson, C. V., Bursnall, M., Bradburn, M., Kumar, P., Turton, E. J., White, D. A., Serfaty, M. A., Graham, C. D., McCracken, L. M., Goldstein, L. H., Al-Chalabi, A., Orrell, R. W., Williams, T., Noad, R., Baker, I., Faull, C., … Waterhouse, S. (2024). Acceptance and Commitment Therapy plus usual care for improving quality of life in people with motor neuron disease (COMMEND): A multicentre, parallel, randomised controlled trial in the UK. The Lancet, 403(10442), 2381–2394. Available here.
- Weeks, K. R., Gould, R. L., Mcdermott, C., Lynch, J., Goldstein, L. H., Graham, C. D., McCracken, L., Serfaty, M., Howard, R., Al-Chalabi, A., White, D., Bradburn, M., Young, T., Cooper, C., Shaw, D. P. J., & Lawrence, V. (2019). Needs and preferences for psychological interventions of people with motor neuron disease. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 20(7–8), 521–531. Available here.
- 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., Young, C. A., … Group, the C. C. (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. The Cognitive Behaviour Therapist, 17, e36. Available here.