Parents of children with ADHD sought alternatives to the dominant biomedical treatment model by expanding treatment options and developing a psychotherapeutic intervention based on experiential knowledge. However, parental choice was limited by scarce services. To influence policy, the parents' group formally evaluated the alternative through independent research, strategically engaging with evidence. While this allowed access to the medical domain, it also risked subsuming experience to science and substituting traditional experts with new professionals.

1. The new professionals?‘ADHD parents’ and the evaluation of alternative therapeutic regimes Claire Edwards & Etaoine Howlett, School of Applied Social Studies, University College Cork

3. The context: children with ADHD and the search for alternative therapeutic strategies

5. Why do parents engage in the process of knowledge production?

6. What relationships do parents form with professionals in the process of producing evidence?

8. Shift from ‘medicalisation from above’ to ‘medicalisation from below’

10. too many choice: choice as a burden rather than empowerment

11. limits of consumerist versions of choice

13. Epistemic identities of patients:

14. scientific literacy

15. experiential versus credentialised knowledge

17. ‘Evidence pays’ in the selling of therapeutic interventions.

19. A continuum of causes and treatments

21. 5 partners from 4 countries: France, Portugal, UK and Ireland

22. Funded by European Commission: ‘Science in Society’ Initiative

23. 4 fields: Rare and Orphan diseases, Childbirth, Alzheimer’s disease, ADHD

24. Case studies exploring issues around epistemic work of patients’ organisations

26. Semi-structured interviews conducted with parents of children with ADHD active in ADHD support groups

27. Interviews with professionals in fields of psychology, psychiatry and education

28. Interviews with academics who conducted evaluations of initiatives

30. Parents sought to reconfigure the nature of the therapeutic regime underpinning treatment of ADHD

31. Expand the treatment options available beyond the “very strongly biological, medical model” encountered by parents – more holistic approach preferred“..assessment, diagnosis and intervention by using a primarily medical model is not the full picture. You need to have other components in place…[The group weren’t] demeaning the medical intervention. They were saying that it’s Step 1 and, in their experience, all the other steps were missing.”(Interview with evaluator)

34. Parental choice in the context of a scarcity of service provision (Valentine, 2010)

35. Parental choice – reduced to “market-orientated empowerment” (Grob & Schlessinger, 2011) “..I thought ‘Well, we’d better investigate this’…it was a private clinician that was doing it…and I was curious because I felt like he was selling a lot…and I thought ‘Well, if parents are spending so much money then let’s find out if it really good and worth it’..” Interview with parents’ support group co-ordinator

37. Intervening in the conceptualisation and shaping of ADHD as condition through funding particular lines of research

38. Creation of a “network assemblage…help weave together networks of patients, funding sources, clinicians and potential researchers”(Hess, 2004) Differing levels of engagement and collaboration with the research process – more than research initiators? Ongoing relationship with epistemic partners

41. Strategic engagement with the concept of evidence and importance of evaluation in creation of particular forms of knowledge

42. Limitations of evidence-based activism

43. A subsuming of experience to science?

44. A substitution of ‘traditional experts’ (i.e. psychiatrists) with new professionals?