Background

Insights into the immunological role of the gastrointestinal tract in autoimmune conditions have led to the investigation of diet as a potential adjunctive treatment option for juvenile idiopathic arthritis (JIA). The specific carbohydrate diet (SCD) has shown promising results. However, studies on participants’ experiences of dietary interventions in JIA are rare. In this study we investigated the experiences of children and parents’ who had participated in a four-week intervention with SCD aiming to examine the potential anti-inflammatory effects.

Objectives

To conduct a qualitative evaluation exploring children’s and parents’ experiences of the dietary intervention, how they navigated challenges, and their support requirements.

Methods

Semi-structured interviews were conducted with 12 children and 15 parents from 13 families, who were interviewed individually and together. The transcripts were analysed using systematic text condensation.

Results

Most participants interviewed found the intervention beneficial, with 12 out of 13 reporting positive effects, such as reduced pain and morning stiffness, and improved gastrointestinal function. Many participants reported being willing to repeat the intervention in the current form. Despite facing challenges, all children followed the diet for one to three months, with some continuing to follow a modified version. Facing the socio-emotional consequences of adhering to the diet was challenging for children. These were handled by focusing on the positive aspects and by relying on the supportive environment available. Parents struggled with practical issues since the diet required hard work, time, and money. Areas identified as requiring additional support include finding simple, quick, and child-friendly solutions, strengthening organizational food skills such as meal planning, and preparation prior to starting the intervention regarding socio-emotional aspects.

Conclusion

Navigating the dietary treatment was considered challenging, practically for the parents and socio-emotionally for the children. Based on the reported challenges and participants’ suggestions the intervention could be optimised by providing support and solutions in relation to the practical issues and better preparation regarding dealing with the socio-emotional consequences. Despite the difficulties, the participants reported overall positive experiences of, and attitudes towards, the current setup. Consequently, dietary interventions, such as the SCD, may be regarded as suitable targets for further research.

Diet is considered a key research priority for juvenile idiopathic arthritis (JIA), garnering considerable interest from affected families. Despite this, research studies focusing on dietary interventions remain scarce. The specific carbohydrate diet (SCD) has shown potential, however, its nutritional consequences and risks are not well understood. This study aims to describe and evaluate food and nutrient intakes in children with JIA adhering to the SCD and contextualize the results relative to recommendations and intakes in the general population. In a secondary analysis, food and nutrient intakes from three-day dietary records of ten children, following a four-week SCD intervention, were evaluated against the Nordic Nutrition Recommendations 2023 and Riksmaten Adolescents data (RMA) (n = 1282). All children following the SCD met the recommended minimum intake of fruit and vegetables of 500g/day, a stark contrast to the 6% in RMA. Median dietary fibre intake for the SCD was 26g/d, (IQR 21-33), compared to 16g/d (IQR 12-22) in RMA. Elevated saturated fatty acid (SFA) intake was observed in both groups, with the SCD group also consuming high amounts of red meat. Calcium was the sole nutrient for which the standard diet surpassed the SCD, as 9 out of 10 participants had inadequate intake. While children on the SCD showed a lower likelihood of nutrient inadequacy compared to the general population, inadequate calcium intake and elevated SFA and red meat consumption are concerning given known comorbidities in JIA. These results highlight the importance of disease-specific dietary guidance to ensure optimal support for patients and parents.