Families as carers-information needs in a cultural context

While the important role of family as a carer has been increasingly recognised in healthcare service provision, particularly for patients with acute or chronic illnesses, the carer’s information needs have not been well understood and adequately supported by current health information systems. In order to effectively provide continuous and home-based care for the patient, a family relative as the primary carer needs sufficient access to medical knowledge and patient’s health information. There are two challenges. First, being a family relative, the primary carer is often a non-medical practitioner. Second, in Australia, many primary carers are family relatives of patients from a non-English speaking background. They are often seen as interpreters in clinical consultation sessions. Their roles and responsibilities as an interpreter and a carer are often mixed and blurry.Therefore, their information needs are often seen as secondary to the patient or neglected. The primary carer’s information needs are currently not yet well understood.This paper reports finding from a case study which examines an on-line diary of a husband-carer who provided support and care for his wife, who at the time of care was a lung cancer patient. The case study examines an ongoing learning process that the husband went through, identifies information needs by the carer and cultural factors which played an important role in the husband’s interpretation of information, decision making and provision of care. The finding extends a current model of the user’s information needs in the literature and suggests implications for further research into developing health information systems to meet information needs by the family carer.