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 randomised controlled trial

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. This nested qualitative study was incorporated within a randomised 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 analysed via thematic analysis. 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. Overall, the intervention was experienced as acceptable. Suggested improvements included de-emphasising the role of mindfulness and adding follow-up sessions.