Participant experiences of guided self-help Acceptance and Commitment Therapy for improving quality of life in muscle disease: a nested qualitative study within the ACTMus randomized controlled trial

Victoria Edwards; Chiara Vari; Michael Rose; Christopher D Graham; Nicola O'Connell; Emma Taylor; Lance M McCracken; Aleksandar Radunovic; Wojtek Rakowicz; Sam Norton; Trudie Chalder

doi:10.3389/fpsyg.2023.1233526

Participant experiences of guided self-help Acceptance and Commitment Therapy for improving quality of life in muscle disease: a nested qualitative study within the ACTMus randomized controlled trial

Front Psychol. 2023 Dec 1:14:1233526. doi: 10.3389/fpsyg.2023.1233526. eCollection 2023.

Authors

Affiliations

¹ Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
² Department of Neurology, King's College Hospital, London, United Kingdom.
³ School of Psychological Sciences and Health, University of Strathclyde, Glasgow, United Kingdom.
⁴ Department of Psychology, Uppsala University, Uppsala, Sweden.
⁵ Barts and the London MND Centre, Royal London Hospital, London, United Kingdom.
⁶ Wessex Neurological Service, University Hospital Southampton, Southampton, United Kingdom.
⁷ Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
⁸ Department of Inflammation Biology, Centre for Rheumatic Disease, Faculty of Life Sciences and Medicine, King's College London, Weston Education Centre, London, United Kingdom.

Abstract

Introduction: In adults, muscle disease (MD) is typically a chronic long-term condition that can lead to a reduced quality of life (QoL). Previous research suggests that a psychological intervention, in particular Acceptance and Commitment Therapy (ACT), may help improve QoL for individuals living with chronic conditions such as MD.

Methods: This nested qualitative study was incorporated within a randomized controlled trial which evaluated a guided self-help ACT intervention for people living with MD to explore their experiences of the intervention. Semi-structured interviews (n = 20) were conducted with those who had received ACT. Data were analyzed via thematic analysis.

Results: There were four overarching themes. (1) Views on whether therapy sessions would help with a medical condition: participants' expectations regarding ACT varied. Some participants were skeptical about mindfulness. (2) I was able to look at things in a different way: participants described increased meaningful activity, greater awareness of thoughts and emotions and acceptance or adaptation to mobility problems. Some described improvement in the quality of relationships and a sense of feeling free. (3) Treating the body and the mind together: following the intervention participants noted that a holistic approach to healthcare is beneficial. (4) Intervention delivery: The remote delivery was generally seen as helpful for practical reasons and allowed participants to speak openly. Participants voiced a need for follow-up sessions.

Discussion: Overall, the intervention was experienced as acceptable. Suggested improvements included de-emphasizing the role of mindfulness and adding follow-up sessions.

Keywords: Acceptance and Commitment Therapy; facioscapulohumeral muscular dystrophy; inclusion body myositis; limb-girdle dystrophy; mood; muscle disorders; quality of life; talking therapies.

Grants and funding

The study was supported by the UK National Institute for Health Research (NIHR) Research for Patient Benefit grant (reference no. PB-PG-061331085) and co-funding from Muscular Dystrophy UK.