Putting knowledge to trial: ‘ADHD parents’ and the evaluation of alternative therapeutic regimes

The role of patients' organisations in shaping (medical) knowledge about particular health conditions and illnesses sheds light on notions of informed patienthood and the dynamics of lay-expert knowledge in the context of medicalisation. This paper considers dynamics of knowledge production in relation to a specific condition area, Attention Deficit Hyperactivity Disorder (ADHD), by investigating how parents of children with ADHD are intervening in knowledge creation about the effectiveness of different treatments for the disorder. It draws on qualitative research carried out between 2009 and 2011 with organisations representing parents of children with ADHD in Ireland, to explore how parents have commissioned evaluations of alternative interventions to medication. Drawing on analysis of 12 semi-structured interviews with both parents and professionals active in the arena of ADHD, documentary evidence, and observation at parent organisations' events, the study demonstrates how parents' interventions have sought to expand the therapeutic domain of ADHD beyond the exclusive realm of biopsychiatry, and the dilemmas they face in making their experiences count in a context where the need for evidence has become paramount in the governance of health.

► Explores how ADHD parent organisations shape knowledge about ADHD and its treatment.
► Parents commissioned evaluations of alternative therapies for ADHD beyond medication.
► Parents deploy research with a pragmatic goal of lobbying for improved, holistic services.
► Parents seek to create credentialised knowledge out of their own experiences.
► Illuminates how the context of evidence-based policy structures parents' knowledge work.