Objective: To describe the experiences of people with bipolar disorder with primary care and specialist mental health services.
Design and setting: Focus groups and indepth interviews were conducted in seven Australian capital cities between July 2002 and April 2003. Thematic analyses were conducted using the QSR NUD*IST software package for qualitative data.
Participants: Forty-nine people with bipolar disorder participated in the focus groups and four participated in the interviews.
Results: Thematic analyses highlighted eight key themes. Most notably, respondents identified a lack of awareness and understanding about bipolar disorder within the Australian community, which contributed to apparent delays in seeking medical assessment. The burden of illness was exacerbated by difficulties experienced with obtaining an accurate diagnosis and optimal treatment. The healthcare system responses were described as inadequate and included inappropriate crisis management, difficulties accessing hospital care, inappropriate exclusion of carers and families from management decisions, and frequent discontinuities of medical and psychological care.
Conclusions: People with extensive experience of bipolar disorder report barriers to optimal care because of lack of community understanding and healthcare system shortcomings. These barriers exacerbate the social, interpersonal and economic costs of this illness.