The experience of psychological therapies for people with multiple sclerosis: A mixed‐methods study towards a patient‐centred approach to exploring processes of change

Abstract

AbstractPsychological therapies are effective for managing multiple sclerosis (MS) symptoms such as depression, pain and fatigue. Cognitive behavioural therapy (CBT), mindfulness and other theory‐led approaches have been applied and were found to have moderate effects. The present study adopts a patient‐led approach to investigate people with MS' (PwMS) experiences of psychological therapies and the change processes they identify. In this naturalistic, mixed‐methods design, semistructured interviews were conducted and three questionnaires were administered to 20 PwMS at two different times. Qualitative data collection and analysis followed the interpretative phenomenological analysis (IPA) guidelines, and quantitative data were analysed using paired t tests. Four superordinate themes described the participants' experiences of change as related to their psychological therapy: from despair to relief; from feeling their body as alien to becoming acquainted with an unpredictable new body; from helplessness to empowerment; and from punishment to forgiveness. Quantitative results showed that physical function and general health perception improved, and anxiety was significantly reduced. Despite seeking help from diverse psychological therapy modalities, the analysis revealed common themes that the participants found significant in their therapy stories. Following a patient‐centred approach, the development of psychological therapies for PwMS should focus on their relationships, everyday lives, body perception, losses, shame and guilt. PwMS also need to be understood and acknowledged beyond their condition.