Changing the Sickle Cell Nutrition Integration Narrative: Qualitative Perspectives From Sickle Cell Service Users/Carers About Nutritional Care

INTRODUCTION: Nutrition is not currently integrated into standard care provision in sickle cell disease (SCD) impacting patients experience, access and outcomes of nutrition. The lack of understanding of the nutritional needs in SCD and its impact on patient outcomes requires exploration to integrate nutrition into clinical practice. However, there is a paucity of qualitative studies conducted with sickle cell service users/carers to explore their views, knowledge and experiences of nutritional care and the influencing factors affecting nutrition integration in SCD care. METHODS: An independent focus group involving SCD service users and carers formed part of a larger four phased participatory sequential Learning Alliance study conducted between March and December of 2020. Purposive sampling was used to recruit suitable adult sickle cell service users/carers (n = 11) to participate in this UK based study. RESULTS: Four main themes were generated including 1) The invisibility of SCD, 2) Under -recognised importance of nutrition, 3) Lack of priority to nutrition and 4) Multi-level factors affecting nutrition and service provision that underscore key knowledge and care gaps in addition to an array of influencing factors affecting nutrition integration in SCD. Moreover, these themes reflect the complexity of sickle cell nutrition and the impact of the lack of nutrition integration on SCD patients access and outcomes of nutrition. CONCLUSION: The main findings provide evidence of the nutrition knowledge and care gaps in SCD and the need to address the under-recognition and lack of priority to nutrition, driving the lack of nutrition integration and poor patient outcomes in SCD.