title: Patients' lay expertise in chronic self-care: a case study in type 1 diabetes.
abstract: 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.
  
  
  METHODS
  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).
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors: Interaction Design Centre, Department of Computer Science & Information Systems, University of Limerick, Limerick, Ireland.
authors: Cristiano
authors: C
authors: Storni
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D003922:Diabetes Mellitus, Type 1 / Q000628:therapy*; D005260:Female; D066296:Grounded Theory; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007328:Insulin / Q000008:administration & dosage; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D036301:Qualitative Research; D012648:Self Care / Q000379:methods* / Q000523:psychology; D012657:Self-Help Groups; D012944:Social Support
chemical_list: D007328:Insulin
keywords: IT; chronic disease; design; diabetes; lay expertise; self-care
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