“How much more can we lose?”: carer and family perspectives on living with a person with depression

Abstract

To explore the experiences of carers and families of people with depression. Structured focus groups conducted in six Australian capital cities between February 2002 and July 2002. Thematic analyses were conducted using the QSR NUD*IST software package for qualitative data. Thirty-seven carers or family members. Thematic analyses highlighted five key themes. Most notably, the carer's role is made more difficult by the lack of community awareness about depression, and, in some instances, an unwillingness of other family and friends to provide ongoing support. Carers experience a resulting sense of isolation, often exacerbated by adverse experiences with healthcare providers. Carers and family members are frequently excluded when key decisions are made, and report that emergency services are relatively unresponsive to their concerns. By contrast, community support organisations usually provided a sense of inclusion and common purpose. The experiences of carers and families of people with depression highlight the urgent need for more extensive community education about the illness and more productive collaboration within the healthcare system.