1759 Emotional mapping to capture patient and families experience at diagnosis of nephrotic syndrome relapse

• Published in: Archives of disease in childhood 2021-10, Vol.106 (Suppl 1), p.A480-A481
• Main Authors: Veligratli, Faidra, Soni, Arpana, Watson, Mando
• Format: Article
• Language: English
• Subjects: Abstracts; Emotions; Feedback; Health care; Kidney diseases; Learning Experience; Mapping; Medical diagnosis; Medical personnel; Nephrotic syndrome; Patients; Pediatrics; Prednisolone
• ISSN: 0003-9888; 1468-2044
• DOI: 10.1136/archdischild-2021-rcpch.835

BackgroundRenal disease care is not confined to tertiary centres. Nephrology teams provide expert advice within renal networks. Effective communication is paramount to ensure patient safety and positive experiences. But how do patients and families perceive being looked after by different teams? In 2020, RCPCH published Paediatrician of the Future, which includes an expectation paediatricians will be familiar with techniques to capture patient perspective. Emotional mapping is an innovative approach in exploring this and facilitating improvement across healthcare.ObjectivesTo use emotional mapping to illustrate a family’s experience, while navigating NHS, during nephrotic syndrome relapse episodes.MethodsCarers of children attending nephrotic syndrome clinics were contacted in advance to explain the project and request participation. A healthcare professional met the family during their wait for appointments. Emotional mapping was used as a tool to facilitate an open, structured conversation, specifically exploring emotions during relapse episodes managed locally. The professional undertaking the interview supported the carer to tell their story of own experiences. The positive and negative emotions were mapped along the journey. The encounter timeframe was 20 minutes. Feedback on the discussion was subsequently collected.ResultsNegative feelings were predominant at the beginning of relapse. Modifiable triggers of negative feelings included: repeating past medical history and accessing prednisolone prescriptions. Treatment initiation was the main timepoint positive feelings emerged. The important role of specialist nurse was emphasised. The parent’s trust in network communication was evident. Feedback on this exercise was that the parent felt heard and optimistic that improvement work is done. The unintended benefit was the invaluable learning experience for the interviewer.ConclusionsAccess to nephrotic syndrome nurse specialist and to prednisolone prescriptions were identified as factors affecting the patient journey. Emotional mapping is a useful tool for understanding patient perspective, as well as a powerful learning experience for trainees.