The lived experience of involuntary community treatment: a qualitative study of mental health consumers and carers

Abstract

Objective: To describe the lived experiences of people subject to community treatment orders (CTOs) and their carers. Method: We recruited 11 participants (five mental health consumers and six carers) through consumer and carer networks in NSW, Australia, to take part in interviews about their experiences. We analysed the interview data set using established qualitative methodologies. Results: The lived experiences were characterised by ‘access’ concerns, ‘isolation’, ‘loss and trauma’, ‘resistance and resignation’ and ‘vulnerability and distress’. The extent and impact of these experiences related to the severity of mental illness, the support available for people with mental illnesses and their carers, the social compromises associated with living with mental illness, and the challenges of managing the relationships necessitated by these processes. Conclusions: The lived experience of CTOs is complex: it is one of distress and profound ambivalence. The distress is an intrinsic aspect of the experience of severe mental illness, but it also emerges from communication gaps, difficulty obtaining optimal care and accessing mental health services. The ambivalence arises from an acknowledgement that while CTOs are coercive and constrain autonomy, they may also be beneficial. These findings can inform improvements to the implementation of CTOs and the consequent experiences. Keywords: carer, community treatment order, interview, involuntary treatment, mental health, patient experience, qualitative research