Perspectives on medicine adherence in service users and carers with experience of legally sanctioned detention and medication: a qualitative study

AIM: To explore and analyze perceptions of service users and caregivers on adherence and nonadherence to medication in a mental health care context. BACKGROUND: Mental health medication adherence is considered problematic and legal coercion exists in many countries. DESIGN: This was a qualitative study aiming to explore perceptions of medication adherence from the perspective of the service user (and their caregiver, where possible). PARTICIPANTS: Eighteen mental health service users (and six caregivers) with histories of medication nonadherence and repeated compulsory admission were recruited from voluntary sector support groups in England. METHODS: Data were collected between 2008 and 2010. Using qualitative coding techniques, the study analyzed interview and focus group data from service users, previously subjected to compulsory medication under mental health law, or their caregivers. RESULTS: The process of medication adherence or nonadherence is encapsulated in an explanatory narrative. This narrative constitutes participants’ struggle to negotiate acceptable and effective routes through variable quality of care. Results indicated that service users and caregivers eventually accepted the reality of their own mental illness and their need for safety and treatment. They perceived the behavior of professionals as key in their recovery process. Professionals could be enabling or disabling with regard to adherence to medication. CONCLUSION: This study investigated service user and caregiver perceptions of medication adherence and compulsory treatment. Participants described a process perceived as variable and potentially doubly faceted. The behavior of professionals was seen as crucial in collaborative decision making on medication adherence.