Dr Angela Sweeney Social Care Institute for Excellence ( SCIE)

1. Feeling afraid: How stigma, discrimination and powerlessness lead to fear in the lives of mental health service users Dr Angela Sweeney Social Care Institute for Excellence ( SCIE)

3. 9 out of 10 believe that people with mental health problems experience stigma and discrimination Attitudes to Mental Illness 2010 9 out of 10 service users believe the public is afraid of them Rose 1996 Stigma and Discrimination

4. rejection and avoidance of people with mental illness appear to be a universal phenomena Thornicroft (2006)

5. rejection, fear of rejection and consequent social withdrawal can intensify and lengthen periods of mental ill-health Sayce and Morris (2007)

6. 4 repeated focus groups Adult service users with psychosis in touch with mental health services (MHS) for at least 2 years South London user groups Continuity of care Outcome measure Rich data Method

7. Uses data that has already been collected Straussian (not Glaserian) Peer debriefing Personal experience Contextualised in literature Secondary Grounded Theory

8. Characteristics of Grounded Theory (Charmaz, 2004)

9. Comparisons, data questioning & memo writing Index cards and spider diagrams Coding frame Open & axial coding Coded concepts & categories explored in grids Analytic stories Stage one: microscopic analysis

10. Central, all other categories relate to it Appears frequently – all or almost all cases Not forced but logical Abstract name Explains variation plus the main point of the data Gains explanatory power through refinement Core process

11. ‘Feeling afraid’ Early conceptual diagram Stigma & discrimination Power & control Psychosis Mental health services Community

12. Early theory is an abstract rendition of raw data (Strauss and Corbin 1996) Therefore, theoretical scheme validated against the raw data Diagram and analytic story of fear led to a new coding frame Selective coding Negative instances Data questioning Stage two: theoretical validation

13. ‘Feeling afraid’ Early conceptual diagram Climate of fear Stigma & discrimination Power & control Psychosis Mental health services Community

14. Conceptual map Public frightened of users Media portrayals Feeling unsafe In the community Fearing other users Out of hours difficult No control over life events Racism Refuge from stigma Positive community responses First experience of psychosis Needing support From services Stigma in the community Isolation & loneliness Community rejection Increasing knowledge Supporting/support from other users Psychosis Community Affect on mental health Crisis Services Behaviour seen as illness Rapid access Avoiding exposure as a user Services = safety Staff power Slow access Dependency KEY Staff gatekeepers Contexts Compulsion Not believed Not seeking help from services Conditions Unable to be yourself Staff stigmatise Abuse of users’ rights Reluctant co-operation Consequences Learning reticence Staff lack respect Government Suspicious of staff Staff keep users down Avoiding services Us / them divide Arrest without crime Legislation Funding cuts

15. During crises, service users often want a listening ear But often fear compulsory treatment and detention Past experiences can lead to: reluctant cooperation reticence suspicions of staff an us/them barrier and service avoidance MHS: power & control

16. They’ve still got some sort of power over you and it’s as if they’re sort of, you know, I feel as though, well I just feel I’ve got to go along with what they say, whether you agree with it or not as a human being, you know, andyou should have rights, certain rights MHS: power and control

17. Some people felt discriminated against, particularly: An immigrant A Black male service user A user with a dual diagnosis This is damaging as staff have the power to withdraw or enforce treatment And can leave people feeling vulnerable & afraid MHS: stigma & discrimination

18. They meet you and they judge you, they stereotype you. We all do it, but in that kind of environment it’s detrimental, you know. MHS: stigma & discrimination

19. Insidious / implicit feelings, states, actions, interactions and consequences Often an interaction between powerlessness & stigma/discrimination MHS: climate of fear • Such as feeling that staff have power and authority over service users yet also hold stigmatising views of us

20. Delaying help-seeking Avoiding services MHS: consequences • Difficult/antagonistic staff/service user relationships leads to suspicion • Feeling disempowered / belittled / dismissed / infantilized / laughed at / humiliated / patronised / treated as a nobody or an idiot • Fearing not doing as you are told • Fighting back can have negative consequences • Fearing compulsion / abuse of rights • Learning reticence / to hide emotions

21. they are quick to make judgements and make decisions that you might not agree with so you start to learn what are the things that you should avoid to tell them because [it] might influence their attitude MHS: climate of fear

22. Services must become less frightening Provide the services people want to use “Paradoxically, black communities receive the MH services they don’t want, but not the ones they do or might want”. Keating and Robertson, 2004 Service users control contacts with services Advanced agreements Towards solutions?

23. angela.sweeney@scie.org.uk