feeling afraid: how stigma, discrimination and powerlessness lead to fear in the lives of mental...
TRANSCRIPT
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)
Stigma and Discrimination
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
rejection and avoidance of people with mental illness appear to be a universal phenomena
Thornicroft (2006)
rejection, fear of rejection and consequent social withdrawal can intensify and lengthen periods of mental ill-health
Sayce and Morris (2007)
Method
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
Secondary Grounded Theory
Uses data that has already been collected
Straussian (not Glaserian)
Peer debriefing
Personal experience
Contextualised in literature
Characteristics of Grounded Theory (Charmaz, 2004)
6 characteristics of GT Met or unmet?
Codes & categories derived from data Met
Theories developed to explain data Met
Analytic notes the step between coding and writing
Met
Literature review delayed Met
Theoretical sampling Not relevant in secondary analysisBut, literature, personal experiences & peer debriefing
Simultaneous data collection & analysis
Not relevant in secondary analysis
Stage one: microscopic analysis
Comparisons, data questioning & memo writing
Index cards and spider diagrams
Coding frame
Open & axial coding
Coded concepts & categories explored in
grids
Analytic stories
Core process
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
‘Feeling afraid’
Mental health services
Psychosis Community
Stigma & discrimination
Power &control
Early conceptual
diagram
Stage two: theoretical validation
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
‘Feeling afraid’
Mental health services
Psychosis Community
Stigma & discrimination
Climate of fear
Power &control
Early conceptual
diagram
Fearing other users
Psychosis Community
Services
Feeling unsafeIn the community
Needing support From services
Supporting/supportfrom other users
Avoiding exposureas a user
Not seeking helpfrom services
Avoiding services
Learning reticence
Unable to beyourself Reluctant
co-operation
Suspicious ofstaff
Us / them divide
Increasing knowledge
Staff stigmatise
Staff gatekeepers
Abuse of users’ rights
Services = safety
Compulsion
Staff power
Crisis
First experienceof psychosis
No control over life events
Refuge fromstigma Positive community
responses
Public frightenedof users
Stigma in thecommunity
Community rejection
Racism
Isolation & loneliness
Out of hoursdifficult
Affect on mental health
Media portrayals
Staff lack respect
Staff keepusers down
Government
LegislationArrest without
crime
Slow access
Behaviour seen as illness
Not believed
Rapid access
Dependency
Funding cuts
Conditions
Consequences
KEY
Contexts
Conceptual map
MHS: power & control
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
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, and
you should have rights, certain rights
MHS: power and control
MHS: stigma & discrimination
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
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
MHS: climate of fear
Insidious / implicit feelings, states, actions, interactions and consequences
Often an interaction between powerlessness & stigma/discrimination
• Such as feeling that staff have power and authority
over service users yet also hold stigmatising views of us
MHS: consequences
Delaying help-seeking
Avoiding services
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
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
Towards solutions?
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
