An In-depth Look at an Informal Carer’s Information Needs: A Case Study of a Carer of a Diabetic Child

Abstract

This paper proposes and reports on an empirical test of a taxonomy of information needs of informal carers. Prior research in this field is limited and has concentrated on the carer’s information needs that are most directly related to the patient’s needs, whereas information needs related to other aspects of being a carer have hardly been addressed. Four main categories of information needs of informal carers are proposed: (i) information needs related to the persons needing care, (ii) information needs related to the informal carers themselves, (iii) information needs related to the interaction between the persons needing care and informal carers; and (iv) information related to the interaction between informal carers and other parties in the context of care. A qualitative case study approach is taken to data from a carer of a child with Type 1 diabetes. Analysis of this case shows information needs in all four categories, although not evenly distributed across them. The paper discusses the adequacy of the four proposed categories to describe the information needs of carers, draws implications for consumer-centred health information systems and outlines directions for further research.