Parents as engaged producers and commissioners of research
The context: children with ADHD and the search for alternative therapeutic strategies
The medicalisation thesis and the role of evidence in patient autonomy
How are parents seeking to become active producers of expert knowledge?
Why do parents engage in the process of knowledge production?
What relationships do parents form with professionals in the process of producing evidence?
What types of knowledge are produced as a consequence of these interventions?
The medicalisation thesis: a key narrative…
Medicalisation: medical knowledge and profession an institution of social control
Shift from ‘medicalisation from above’ to ‘medicalisation from below’
The ‘empowered/informed patient’ (or parent) and the end of professional dominance?
Deconstructing the ‘informed patient’…
Rational, informed patient implies choice
choice often limited where services are scarce
too many choice: choice as a burden rather than empowerment
limits of consumerist versions of choice
Inability to choose without recourse to professional advice/intervention
The role of knowledge and evidence in patient advocacy
Epstein (1995, 2011): role of patients’ organisations in shaping medical knowledge
Epistemic identities of patients:
experiential versus credentialised knowledge
Evidence-based medicine/policy and its limits…
Patients unable to make decisions without recourse to ‘evidence’.
‘Evidence pays’ in the selling of therapeutic interventions.
Evidence-based medicine has the potential to limit the types of knowledge which are seen as legitimate.
Attention Deficit Hyperactivity Disorder
A contested condition: no definitive medical test
A continuum of causes and treatments
ADHD is “genetically transmitted (often runs in families) and is caused by a chemical imbalance or deficiency in certain neurotransmitters (chemicals that regulate the efficiency with the brain controls behavior)”[www.incadds.ie/what-is-adhd-add.html]
Overview of EPOKS Project
Collaborative research project
5 partners from 4 countries: France, Portugal, UK and Ireland
Funded by European Commission: ‘Science in Society’ Initiative
Case studies exploring issues around epistemic work of patients’ organisations
Specifically focused on role in production of medical knowledge
EPOKS Project:Irish strand of ADHD research
Semi-structured interviews conducted with parents of children with ADHD active in ADHD support groups
Interviews with professionals in fields of psychology, psychiatry and education
Interviews with academics who conducted evaluations of initiatives
Specific knowledge-related initiatives :
‘Testing the waters’Evaluating the alternatives
Dominance of biomedical treatment regime
Parents sought to reconfigure the nature of the therapeutic regime underpinning treatment of ADHD
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)
Experiential knowledge – key role in developing psychotherapeutic intervention
Fulfilling parents’ own need for support and information “..medication provided a platform from which other things could happen and, in their experience, the other things hadn’t happened…there was very little exposure to professionals other than psychiatry…[The group] were believing that, in order for their kids to do okay…they needed support from other professionals.” Interview with evaluator “The support group had ideas, ideas that had come from their own experiences of having relatives with the condition..” Interview with evaluator
Constraints on action:Bounded choice
Parental choice in the context of a scarcity of service provision (Valentine, 2010)
“..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
Constraints on action:Bounded choice
Intervening in the conceptualisation and shaping of ADHD as condition through funding particular lines of research
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
“Medical modernity” (Hess, 2004) – potential to access the medical domain, once claim is made with reference to science
Importance of independent, credentialised knowledge Formal evaluation - an important process in order to successfully mobilise experiential knowledge to influence policy “..[the parents’ group]’ll use the report to say ‘Look, we carried this out. We’ve funded it. It worked. We’ve had it independently evaluated’.” Interview with evaluator
Some concluding points…
Notion of choice for parents is complex and nuanced
Strategic engagement with the concept of evidence and importance of evaluation in creation of particular forms of knowledge
Limitations of evidence-based activism
A subsuming of experience to science?
A substitution of ‘traditional experts’ (i.e. psychiatrists) with new professionals?