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Memory rehabilitation for people with multiple sclerosis.

Purpose This meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis. Methods Five electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence. Results Thirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis. Conclusions Our synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis. Implications for Rehabilitation The period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding. Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions. Adaptive coping skills and support resources could contribute to better adjustment following diagnosis. Support interventions should be tailored to the needs of newly diagnosed people.

Acceptance and Commitment Therapy (ACT) is an established psychological therapy, but its effectiveness for carers of people with multiple sclerosis (MS) experiencing carer-related strain has not been established. This study assessed the acceptability and feasibility of conducting a randomised controlled trial comparing ACT self-help, telephone-supported ACT self-help, and usual care. We describe a mixed-method, parallel three-armed feasibility randomised controlled trial. Participants were carers (i.e. caregivers) of people with MS. The self-help group received an ACT self-help text (covered over 8 weeks), the enhanced self-help group additionally received weekly telephone support. All participants completed questionnaires at baseline, 3-month, and 6-month post-randomisation, assessing carer strain, health-related quality of life, and ACT-related processes. A sample of participants was also interviewed. Twenty-four carers were randomised. Participants found the study procedures to be acceptable, but highlighted difficulties with the self-help text and timing of the intervention. An exploratory, group-level analysis indicated effectiveness for the enhanced self-help group on carer strain (consistent across both follow-ups), with convergent qualitative reports to support this. A full trial of ACT-based, telephone-supported self-help is warranted, including both the self-help and enhanced self-help design, following significant adaptions to the self-help itself. An internal pilot would, therefore, be recommended to further assess the feasibility after changes are incorporated. Trial registration: The trial was registered on ClinicalTrials.gov (NCT03077971).