Addressing the “how does it work?” question in complex mental health intervention

1. Addressing the “how does it work?” question in complex mental health intervention John Aggergaard Larsen European Institute of Health and Medical Sciences University of Surrey j.larsen@surrey.ac.uk BSA Sociology of Mental Health Study Group Rethinking the Boundaries 30 June 2005, Nottingham

2. Aims of paper • Outline the limitation of traditional outcome-focused intervention studies in mental health • Argue the value of qualitative research on complex mental health interventions • Argue the value of applying sociological and anthropological theory to examine the workings and effects of complex mental health interventions • Example: person-centred ethnographic study of early intervention in psychosis service

3. The traditional outcome-focused research design • The randomised controlled trial (RCT) as the ‘gold standard’ – use of control group to demonstrate effects of new/other intervention: ‘does it work better or worse?’ • Other factors kept constant – study of ‘pure effect’ (ideal: a drug) • Focus on outcome – dependent on valid variables and reliable measurements. • Assumption that interventions are following guidelines/protocol (that the intervention element is constant and unproblematic or controllable).

4. The challenge of complex interventions • Recognition in mental health that medical treatment needs to be supplemented with therapeutic intervention and social support – integrated ‘biopsychosocial’ treatment. • In complex interventions it is difficult to isolate the treatment/intervention effect – the difficulty of identifying the ‘active ingredient’. • The theoretical understanding of complex interventions’ efficacy is often poorly developed. • Complex interventions are difficult to control and standardise – they are ‘messy’ and dependent on a variety of professional, personal, social, cultural, institutional and cost variables.

5. The problem of the ‘black box’ • It is problematic to treat a complex intervention as a ‘black box’ of therapeutic effect – the intervention is not ‘one thing’. • It is insufficient to rely on guidelines and ‘check list’ protocols to control and standardise the intervention. • Assuming a ‘black box’ ignores the important question: ‘how does the intervention work and bring about treatment effects?’

6. Complex interventions and qualitative methodology • Necessary to look in detail at how the intervention is provided and how patients/clients benefit – utilising qualitative methods (Campbell et al. 2000; MRC 2000). • Taking an explorative and theory-generating approach to identify and understand the workings within the ‘black box’ – define relevant variables and processes. • (The qualitative findings can (later) be applied in a large-scale quantitative study to look at issues of prevalence and regional variation.)

7. Ethnography in the study of complex interventions • Ethnography allows the researcher to take a holistic, flexible and explorative approach to the field of study (Sharkey & Larsen 2005). • The ethnographer is actively present in the intervention by using him-/herself as a research tool and taking a socially visible membership role (Adler & Adler 1987). • Ethnography seeks to identify: • sociocultural processes in specific settings and • the perspectives and activities of individuals/agents

8. Example: studying early intervention in psychosis • Outcome studies suggest that integrated ‘biopsychosocial’ treatment and support following first episode psychosis improves recovery and mental health prognosis (Birchwood et al. 1998; McGorry & Young 2003). • Early Intervention in Psychosis (EIP) services are a NHS policy priority (DoH 2000). • 50 services are being established nation-wide – 3-years intervention. • Clinical guidelines seek to direct and standardise the interventions (DoH 2001).

9. Questions of working and effect • How do EIP services bring about the positive outcomes – what is the ‘active ingredient’? • How does the intervention influence clients’ experiences and perspectives? • How do variations in EIP service delivery and staff-client interaction influence clients’ social roles and trajectories? • What does variations in clients’ attitudes, perceptions and their social backgrounds mean to the effectiveness of the intervention? • What does ‘recovery’ mean following first episode psychosis?

10. Person-centred ethnographic study of Danish EIP service, 1998-2000 • Accessed through role as project evaluator of experimental project, while PhD student in Sheffield (Larsen 2002). • Participant observation in day-to-day work of the service, therapeutic settings and staff meetings. • Repeated interviews with 15 clients over a two and a half year period and participatory approach: creative-expressive project group producing a book with six stories.

11. Some findings • Becoming mentally ill represented an existential crisis that was life-disrupting and involved a sense of ‘ontological insecurity’ (Larsen 2005). • The psychotic experiences were disturbing and some engaged in creative meaning-making activity, drawing on systems of explanation from the cultural repertoire (Larsen 2004). • Through ‘psychoeducation’ and cognitive therapy the intervention provided scientific and psychological-mechanistic theories that provided a ‘symbolic myth’ for processes of ‘symbolic healing’ (Larsen, under review).

12. Proposed multi-site study in the UK • A comparative multi-site ethnographic study of UK EIP services based on participant observation in service interventions and longitudinal engagement with clients (key informants and creative-expressive project work). • Improve understanding of: • The sociocultural therapeutic workings of EIP services • The trajectories of clients given individual and social circumstances • Theoretical understanding of ‘recovery’

13. In conclusion • The need for qualitative (ethnographic) methods when studying complex interventions. • Sociological and anthropological theory can contribute to understanding the sociocultural therapeutic effect of complex interventions. • Comparative design required to examine how client trajectories relate to differences in service delivery and client circumstances. • Strategic collaboration with mental health service providers and involve large-scale quantitative studies to identify prevalence and regional variation.

14. References Adler, P. A., & Adler, P. (1987) Membership roles in field research. Newbury Park, CA: Sage. Birchwood M, Todd P, Jackson C (1998) ‘Early intervention in psychosis: the critical period hypothesis’, British Journal of Psychiatry 172: 53-159. Campbell, M., Fitzpatrick, R., Haines, A., Kinmonth, A. L., Sandercock, P., Spiegelhalter, D., & Tyrer, P. (2000) Framework for design and evaluation of complex interventions to improve health. British Medical Journal, 321, 694-6. Department of Health (2000) NHS Plan. A Plan for Investment. A Plan for Reform, http://www.doh.gov.uk/nhsplan/nhsplan.pdf Department of Health (2001) The Mental Health Policy Implementation Guide, http://www.doh.gov.uk/pdfs/mentalhealthimpgraphics.pdf Larsen, J. A. (2002) Experiences with early intervention in schizophrenia: an ethnographic study of assertive community treatment in Denmark. PhD Thesis. Department of Sociological Studies, University of Sheffield. Larsen, J. A. (2004) Finding meaning in first episode psychosis: experience, agency and the cultural repertoire. Medical Anthropology Quarterly, 18(4), 447-471. Larsen, J. A. (2005) Becoming mentally ill: existential crisis and the social negotiation of identity. In V. Steffen, R. Jenkins, & H. Jessen (Eds.), Managing uncertainty: ethnographic studies of illness, risk and the struggle for control (pp.197-223). Copenhagen: Museum Tusculanum Press. McGorry, P. D., & Yung, A. R. (2003) Early intervention in psychosis: an overdue reform. Australian and New Zealand Journal of Psychiatry, 37(4), 393-398. Medical Research Council (2000) A framework for development and evaluation of RCTs for complex interventions to improve health, http://www.mrc.ac.uk/pdf-mrc_cpr.pdf Sharkey, S., & Larsen, J. A. (2005) Ethnographic exploration: participation and meaning in everyday life. In I. Holloway (Ed.), Qualitative methods in health research, pp. 168-190. Maidenhead: Open University Press.