Sorting Out Autism Spectrum Disorders: Evidence-Based Medicine and the Complexities of the Clinical Encounter

Clinical decisions regarding the diagnosis and treatment of Autism Spectrum Disorders (ASDs) are commonly based upon heterogeneous evidence and ‘expert opinion’. To date, research examining how paediatricians are using (or not using) evidence-based medicine (EBM) to diagnose and treat patients with an ASD has been absent within the literature across all disciplines. To understand how Australian paediatricians are using EBM to conceptualise, diagnose, and treat patients with an ASD, this study interviewed nine paediatricians in private practice using a face-to-face, semi-structured approach. Participants were asked questions about diagnosis and treatment of ASDs, and general questions about their attitudes towards EBM. Analysis of the interviews revealed four key factors affecting the clinical encounter with the ASD patient: the role of experience in the clinical encounter, the tacit and experiential nature of diagnosing and treating ASDs, skilful and creative interaction between the paediatrician and the diagnostic tools (tool “tinkering”), and the influence of political and social forces. This study contributes to sociological understandings of EBM and how it is used by paediatricians to diagnose and treat ASDs. It also demonstrates that this process involves constant negotiation between clinical experience, the evidence, intersubjective evaluation, and social forces

The autism diagnostic encounter in action: Using video reflexive ethnography to explore the assessment of autism in the clinical trial

Despite the increasing visibility of autism, this disorder has resisted a consistent and stable diagnostic definition, treatment approaches, and biomedical and genetic attempts to make sense of how it manifests within the body. That this confusion remains despite the enormous biosocial productivity of the category indicates that there is likely a unique set of circumstances, an “epistemic murk” (Eyal et al 2014), in which autism exists, and perhaps thrives. Given there is limited understanding of how clinicians diagnose ASD in practice, especially within the diagnostic encounter of the clinical trial, this thesis focuses on the contention and “epistemic murk” that surrounds autism as the object of the clinical trial and the paradoxical attempts by medicine and the psy-sciences to codify, standardise and quantify this heterogeneous disorder. Using a video-reflexive ethnographic (VRE) approach, I observed and videoed 22 diagnostic sessions with parents and children over two years as part of a randomised double blind placebo-controlled drug trial in a children’s hospital in New South Wales, Australia. Edited clips from these videos were later played back to the clinician in reflexive one-on-one feedback sessions with the researcher, allowing the collaborative analysis of complex diagnostic data. This video data provides a rich, negotiated, embodied and socially nuanced picture of the autism diagnostic encounter in action within the clinical trial. In this context, autism is no longer perceived solely as a set of observable behaviours, but rather a disorder that is firmly located within the brain and its processes. ASD medication, the disorder itself, and the individual ASD brain cannot be properly conceptualised without each other, with each element feeding into a classificatory loop. This data also demonstrates how participants must constantly negotiate between the inherently qualitative nature of the diagnosis in practice and the standardised agenda of the clinical trial, which views disorder as a quantitative deviation from a statistical norm. The thesis argues that during the diagnosis, the clinician must filter, categorise and quantify this complex, inter-subjective, experiential knowledge to fit with what counts as measurable evidence. However, it is behind the scenes that the real labour of the clinical trial occurs. This labour generates data through participants’ value-orientation, their experiences, stories, and corporeal translation of knowledge. This diagnostic work is above all complex, value-laden and qualitative

Sorting Out Autism Spectrum Disorders: Evidence-Based Medicine and the Complexities of the Clinical Encounter

Clinical decisions regarding the diagnosis and treatment of Autism Spectrum Disorders (ASDs) are commonly based upon heterogeneous evidence and ‘expert opinion’. To date, research examining how paediatricians are using (or not using) evidence-based medicine (EBM) to diagnose and treat patients with an ASD has been absent within the literature across all disciplines. To understand how Australian paediatricians are using EBM to conceptualise, diagnose, and treat patients with an ASD, this study interviewed nine paediatricians in private practice using a face-to-face, semi-structured approach. Participants were asked questions about diagnosis and treatment of ASDs, and general questions about their attitudes towards EBM. Analysis of the interviews revealed four key factors affecting the clinical encounter with the ASD patient: the role of experience in the clinical encounter, the tacit and experiential nature of diagnosing and treating ASDs, skilful and creative interaction between the paediatrician and the diagnostic tools (tool “tinkering”), and the influence of political and social forces. This study contributes to sociological understandings of EBM and how it is used by paediatricians to diagnose and treat ASDs. It also demonstrates that this process involves constant negotiation between clinical experience, the evidence, intersubjective evaluation, and social forces

Facilitating Whole Person Care Using Video Reflexive Ethnography

Aim: Explore the application and potential of video reflexive ethnography (VRE) to facilitate whole person care (WPC).Objectives: Discuss the ethical issues associated with VRE; explore the foundations of the methodology; and discuss its potential to facilitate WPC.Description: WPC requires a paradigm shift in how we see those we care for, how we see our co-workers and how we see ourselves. VRE involves videoing real-time everyday clinical practice and or patient and family accounts of care, and then involving participants to analyse the visual data that they feature in or have gathered themselves. Uniquely, video footage can challenge the taken for granted and attune people to dimensions of themselves and others that they might not otherwise have considered. This has the potential to open people up to alternative ways of thinking and perceiving, being and acting. It offers “transformative potential” towards WPC.We draw from our diverse disciplinary perspectives to explore the potential of VRE as a tool to facilitate WPC. Using specific examples from five research studies, this workshop will demonstrate the use of VRE in a variety of health care contexts. The contexts of the studies we draw from include: end of life care; autism diagnostics; infection control, and intensive care.The workshop proceeds in four parts. We first invite you, the participant, to engage in a video reflexive event, where you are expected to reflect on the socio-interactive conduct that you produce as a group in response to a specific task.  We then describe the process of VRE, outline its pedagogic and theoretical foundations, and present some examples from our research. We then invite questions about the theoretical basis and practical approach of VRE. Finally, participants will be asked to project a version of reflexive video onto their 'home' area of research, and reason about potential outcomes.1. Carroll, K., Iedema, R.  and  Kerridge, I. 2008, 'Reshaping ICU Ward Round Practices Using Video Reflexive Ethnography', Qualitative Health Research, vol. 18, no. 3, pp. 380-390.2. Collier, A. 2012, 'Safe Healing Environments', in N. Godbold  and  M. Vaccarella (eds), Autonomous Responsible Alone: The Complexities of Patient Empowerment, Interdisciplinary Press, London, pp. 155-170.3. Iedema, R. 2011, 'Creating Safety by Strengthening Clinicians' Capacity for Reflexivity ', British Medical Journal, vol. 20, pp. S83-S86.4. Iedema, R.  and  Carroll, K. 2011, 'The 'clinalyst': Institutionalising reflexive space to realise safety and flexible systematisation in health care', Journal of Organisational Change Management vol. 4, no. 1, pp. 65-86.5. Iedema, R., Long, D., Forsyth, D.  and  Lee, B.B. 2006, 'Visibilising Clinical Work: Video ethnography in the contemporary hospital', Health Sociology Review, vol. 15, pp. 156-168

Breast milk donation after neonatal death in Australia: a report

Lactation and breast milk can hold great value and meaning for grieving mothers who have experienced a recent death of an infant. Donation to a human milk bank (HMB) as an alternative to discarding breast milk is one means of respecting the value of breast milk. There is little research, national policy discussion, or organizational representation in Australia on the subject of breast milk donation after infant death. On 29 November 2013 the Mercy Hospital for Women in Melbourne, Australia hosted Australia’s first National Stakeholder Meeting (NSM) on the topic of milk donation after neonatal death. The NSM drew together representatives from Australian HMBs, neonatal intensive care units (NICUs) currently using donor human milk, and Australia’s chief NICU parent support organization. The NSM was video-recorded and transcribed, and analyzed thematically by researchers. This article reports the seven dominant themes discussed by stakeholders during the NSM: the spectrum of women’s lactation and donation experiences after infant death; the roles of the HMB and NICU in meeting the needs of the bereaved donor; how bereaved mothers’ lactation autonomy may interface with a HMB’s donation guidelines; how milk donation may be discussed with bereaved mothers; the variation between four categories of milk donation after neonatal death; the impact of limited resources and few HMBs on providing donation programs for bereaved mothers in Australia. This article provides evidence from researchers and practitioners that can assist HMB staff in refining their bank’s policy on milk donation after infant death, and provides national policy makers with key considerations to support lactation, human milk banking, and bereavement services nation-wide