People living with multiple sclerosis (plwMS) expect to receive nutrition information from healthcare professionals (HCPs), to self-manage their disease. This study aimed to explore plwMS' experiences with nutrition-related care and generate an understanding of their needs and preferences for how it could be delivered in routine care.
This qualitative study, informed by an interpretive phenomenological approach, was undertaken using online focus groups with Australian adults living with MS. The discussions were recorded and transcribed verbatim. Transcribed data were analysed using an inductive, reflexive thematic analysis framework.
Twenty-five plwMS participated in one of six focus group discussions. Three key themes and seven subthemes representing participants' experiences and needs were generated: (1) nutrition guidance is overlooked in routine MS care due to HCPs prioritising medication over nutrition, resulting in the perception that plwMS are their own nutrition educators; (2) routine nutrition guidance is needed, highlighting the desire to receive accessible and meaningful MS-related nutrition information from HCPs with nutrition knowledge for MS; and (3) person-centred care is a priority, highlighting the importance of acknowledging that no one-size-fits-all approach exists for plwMS, providing a holistic approach to the coordination of nutrition care and access to dietetic services.
This study generated insights into the gaps between the needs and experiences of plwMS with nutrition-related care during routine MS care, which may impact their MS journey. PlwMS seek credible, simple, consistent and MS-specific advice to be provided routinely for their care. Our findings underscore the need for individualised nutrition care from a nutrition-qualified HCP or dietitian.