Patients' lay expertise in chronic self-care: A case study in type 1 diabetes

Background: The impact of chronic diseases in our society is growing. The idea of self-care generates understandable enthusiasm and is seen as a natural answer. It is important to develop an understanding of self-care practices that goes beyond a clinical understanding of the disease and that acknowledges everyday practicalities, and the perspective of the patient. Objective: To shed light on some of the practicalities of everyday chronic self-care, to expose to analysis the key role of lay expertise and to stress the importance of its recognition in future chronic care practices and technology. Design: Ethnomethodological investigations based on observations of a patient support group (10 months) and some shadowing sessions of everyday practices, semi-structured interviews with individuals with type 1 diabetes (n = 14) and professional caregivers (n = 7). Analysis: The qualitative data analysis was inspired by grounded theory and aimed at ordering data under emerging categories and topics. Results: The patient's knowledge and expertise is critical to grounding, integrating and complementing technical-medical/clinical knowledge in everyday chronic self-care. To deal with the intricacies and difficulties of everyday chronic self-care, individuals with type 1 diabetes develop different ways of knowing and dealing with the disease that need to be equally taken into account in the reorganization of care delivery, and in the design of the tools to support it. Conclusion: Rethinking the traditional separation between hard and soft data may be a possible first step towards rethinking the role of lay expertise in chronic care towards better supports for self-care practices and patient empowerment.