Co-developing a health literacy framework to integrate nutrition into standard care in sickle cell disease

Nutrition in Sickle Cell Disease (SCD) is a neglected part of standard care impacting patient outcomes, despite it being widely researched. Moreover, the clinical features of SCD, a marginalised genetically inherited blood disorder, are responsible for growth and nutritional deficiencies that require nutrition service provision. Thus, a need exists to identify the influencing factors affecting the lack of nutrition integration in SCD. Presently, a paucity of research exists on how to integrate nutrition into standard care in SCD using health literacy in a novel way to support policy and practice development.

The study adopted a four phased sequential participatory Learning Alliance Methodology, involving sickle cell service users and carers (n=11) and service providers (n=7), between March to December, 2020, to co-develop a health literacy framework to support nutrition integration in SCD. Independent focus groups (phase one), network meetings (phase two, three and four) and an evaluation questionnaire, was used to collect the data.

Thematic analysis of the focus groups outcomes revealed four common themes namely; (1) 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 together reflect key influencing factors identified as knowledge and care gaps, essential to tailor policy and practice in nutrition in SCD. Following consensus development and validation through network meetings, the evaluation of the health literacy framework (phase four), found the framework to be a valuable educational, communication and policy tool.

Overall the findings confirm the complexity, invisibility and neglect of nutrition service provision as part of standard care in SCD, a health inequality impacting patient experience, access and health outcomes, explained by the marginalisation of SCD. Hence, the influencing factors identified in the study require a whole systems policy and practice strategy to integrate nutrition into standard care in SCD.