A meta-synthesis of qualitative studies on patients' views and experiences of Multiple Sclerosis diagnosis

Abstract

Background and aims: The process of being diagnosed with multiple sclerosis (MS) can be long and frustrating for individuals, which may affect their perceptions of MS and future relationships with healthcare professionals. This, in turn, may have a negative impact on psychosocial adjustment to MS and treatment outcomes. Providing support at the point of diagnosis could facilitate the adjustment process. However, there is a lack of adequate theoretical frameworks that would allow researchers and clinicians to fully understand the needs and experiences of people at diagnosis, making it difficult to design and implement support services. Therefore, we conducted a meta-synthesis of qualitative studies to improve our conceptual understanding of the needs and experiences of people around MS diagnosis. Method(s): We systematically searched five electronic databases to identify qualitative papers that focussed on views and experiences of people around MS diagnosis. Identified studies were qualityappraised using a standardised checklist, and data entered onto a bespoke data extraction form. Extracted data were synthesised using meta-ethnographic methods. Result(s): We identified 28 papers (with 750 people with MS, 38 family members/carers and 19 healthcare professionals) that focused on diagnosis experiences of people with MS. The line of argument synthesis highlighted that people experience several negative emotions (e.g., shock, denial, anger, anxiety) and external stressors (e.g., lengthy diagnostic process) around diagnosis, which may limit their ability to make sense of the diagnosis and adjust to MS. However, helpful coping and support resources (e.g., using re-appraisal, seeking relevant and reliable information, formal/informal support) might facilitate the adjustment process to MS diagnosis. Discussion(s): Our synthesis highlights the need for providing person- centred support and relevant and adequate information for people at the time of MS diagnosis. We present novel theoretical insights into the needs and experiences of individuals around diagnosis for designing interventions to improve adjustment to MS.