Nutritional interventions for symptom management in Ehlers-Danlos Syndrome: An Interpretative Phenomenological Analysis of patients’ lived experience
By Helen Spriggs - Online MSc - Advanced Nutrition
Abstract
Background
The Ehlers Danlos Syndromes (EDS) are a group of connective tissue disorders characterised by joint, skin, and tissue dysfunction and a variety of symptoms including chronic pain and fatigue, dysautonomia, digestive disorders, organ prolapses, and mast cell activation. Focusing on improving assessment and diagnostic criteria for EDS, current research has yet to evaluate including nutritional interventions in a care programme for EDS. Anecdotal case reports and expert opinion papers suggest nutritional interventions may provide a low-risk option to address certain symptoms of EDS.
Aims and objectives
This research aimed to explore EDS participants’ lived experience of using nutritional interventions as part of symptom management for their EDS. Purposive sampling was used to recruit and interview five United Kingdom based adult participants with EDS.
Methods
The idiographic nature of Interpretative Phenomenological Analysis allowed for a detailed investigation of the participant's complex experiences. Semi-structured interviews were audio-visually recorded and provided verbatim transcripts for analysis. Each participant’s story was explored in detail during the interview and through data analysis, moving from small to large sections of data in an iterative process to develop superordinate themes.
Findings
Three superordinate themes emerged, each additional subordinate themes for discussion. All participants had considered and tried nutritional interventions, indicating EDS symptom or comorbidity management was the main reason for doing so. Different nutritional interventions impacted each participant through unique experiences, but all participants reported an impact on their lived experience of managing symptoms of EDS.
Conclusion
Nutritional interventions have the potential to impact participant lived experience of EDS including improvement of certain symptom management. A wide array of possible modifications including dietary changes, supplementation, eating habits, and medical intervention were reported, with participants sharing a desire to be heard and provided access to supportive nutritional advice.
