Exploring the perspectives of people whose lives have been affected by depression

OBJECTIVES: To describe the experiences of people whose lives have been affected by depression. DESIGN, SETTING AND PARTICIPANTS: Thematic review of data collected from 21 community meetings (1529 people, providing 911 evaluation forms) and nine focus groups (69 individuals) held nationally, and written feedback and website-based interactions with beyondblue: the national depression initiative between April and December 2001. MAIN OUTCOME MEASURES: Barriers to social participation experienced by people whose lives have been affected by depression, and their interactions with the healthcare system. RESULTS: The key theme was the experience of stigma, which was evident in healthcare settings and in barriers to social participation, particularly regarding employment. Inadequacies of primary care and specialist treatment systems were highlighted. Particular emphasis was placed on limited access to high-quality primary care and non-pharmacological care. The stigmatising attitudes of many healthcare providers were notable. Within society, lack of access to knowledge and self-care or mutual support services was evident. Lack of support both from and for people in caring roles was also emphasised. CONCLUSIONS: People with depression are subject to many of the same attitudes, inadequate healthcare and social barriers reported by people with psychotic disorders. Consumers and carers prioritise certain notions of illness, recovery and quality of healthcare, and expect healthcare providers to respond to these concerns.