Experiences of adjustment to secondary progressive multiple sclerosis: a meta-ethnographic systematic review

Abstract

PURPOSE: To provide an overview of the experiences and needs of patients adjusting to life after receiving a diagnosis of secondary progressive multiple sclerosis (SPMS). METHOD: We conducted a meta-ethnographic synthesis of qualitative studies on the experiences of transition to SPMS, based on a systematic literature search of CINAHL, PsycINFO, Embase, MEDLINE, and Web of Science. Identified studies were quality-appraised using a critical appraisal checklist, and individual findings synthesised inductively. RESULTS: The synthesis included 12 articles with 144 people with SPMS. Adjusting to SPMS transition encompassed a variety of reactions and coping strategies. Successful adjustment was associated with accepting and adapting coping strategies, and availability of social support and relationships. Clinical services increased uncertainty around adjustment where patients felt clinicians were not transparent with them about their changing diagnosis. CONCLUSIONS: People adjust to SPMS in different ways, with the success of adjustment influenced by a patient's primary coping mechanism. Coping mechanisms are determined by pre-existing individual differences, alongside engagement with, and quality of, social support networks and activities. Services should ensure that people are provided with informational support about their illness progression, and emotional support concerning coping strategies, social networks, and physical activity, as these are key determinants of successful adjustment.IMPLICATIONS FOR REHABILITATIONAdjusting to secondary progressive multiple sclerosis is a difficult and stressful time for patients.Coping strategies patients use, their support network and their activity levels are key determinants of successful adjustment.Clinicians should be open with patients about their assessment of their changing diagnosis, rather than trying to avoid upsetting the patient by withholding information.Clinical services should be proactive in supporting patients during adjustment with learning positive coping strategies, and maintaining or increasing social relationships and activity levels.