W2-T2 Nothing about me without me: growth of the expert by experience Flashcards
what was the main argument of closing the asylum by both left and right wing
seeing psychiatric hospitals and the discipline itself as fundamentally coercive
left-wing – depicted psychiatry as one manifestation of the controlling arm of the bourgeoisie
feminist –emblematic of more general patriarchal power and gender inequalities
what are the academic’s interest in antipsychiatry
Erving Goffman - total institution actually aggravated long-term difficulties of people by fostering dependency, routine, and isolation from normal, everyday life.
Michel Foucault - was an 18th-century social construct – institutions as tools of oppression and depersonalisation, their staff as agents of social control
Thomas Szasz - denied the very existence of mental illness, viewing psychiatric disorders as the product of medical misinterpretations
Ken Kasey - conceptualised psychiatric patients as nonconformists
R.D. Laing - rejecting medical psychiatry and encouraging greater attention to patients’ lived experiences
why 1960s have been regarded as a critical decade in British psychiatry
– radical overhauls of existing health policy and services organisation
– Minister of Health (1961) called for large-scale asylum closure in favour of community-based services,
– based reportedly on declining long-stay mental hospital populations
–Followed by National Hospital Plan (1962) –
– Psychiatry was to become a core speciality a new district of general hospital
– mental hospital provision halved
– desired to unify with general medicine, therapeutic optimism
– antipsychiatry works of the 1960s and ‘70s popularised the notion of insanity as a social construct,
problematised by medicine, politics, and law, views which gathered support from both inside and outside of the psychiatric
profession
– Biological and social constructionist views justified spending cuts and asylum closure
what is the problem that arises with closing down the hospitals
– gradual process
– hospital closed down before community-based alternative was available
– the inability of community care to deal with the transformation of mental illness
– failure increased stigma and isolation experienced by recently discharged patients
how deinstitutionalisation / decarceration change mental health care
provided momentum for community-based studies
patient-authored accounts
activism
describe two users control research projects in 1990s
- strategies for living – looked at peoples’ own strategies for dealing with mental distress (2000)
- user-focused monitoring – peer evaluation of community and hospital services (1998)
– both coordinated by the service user
– peer review later spread to other locations and services assisted by INVOLVE
what happened after the creation of the Service User Research Enterprise, SURE in 2001
marked the transition of user-led research into academia
How SURE emerged
from the efforts of its first director, Professor Dame Til Wykes, to champion service user involvement in all aspects of research
what SURE do
conducts research to test the effectiveness of services and treatments from the perspectives of people with mental
health problems and their carers
What are other service users’ research groups established besides SURE
SURE Search (2021) Uni of Birmingham - Members include users and survivors of mental health services and their allies
Shaping our Lives National User Network - independent user-controlled group, think tank, and network (began as R&D project)
The Survivors History Group (2005) -to value and celebrate the historical contributions of mental health service users
The McPin Foundation (2007) -initially focused on promoting mental well-being by awarding grants, evolving into a dedicated user-focused mental health research organisation from 2012
St Georges University of London - emphasises peer support working and co-production approaches,
working alongside researchers with lived experience of mental health problems
– Critique and strengthen the production of knowledge about mental health
Internationally - many individuals working as service user researchers
define the difference in between service us / consumer and survivor of psychiatry
service user/consumer – focuses on reforming the existing system
survivor of psychiatry – puts the entire psychiatric system in question, including the very premise of mental illness
what has been the challenge for service user co-collaboration and co-production of research
role blurring
misconception
define three types of service user (Hugh McLaughlin) and the meaning
direct – recent or current experience from service provider research
indirect – involved in studies focused on related services outside their geographical area (i.e. as part of a national or multi-site project)
alternative – experience of using service in one specific domain (i.e. breast cancer)
how the term service user has been criticized
- value-laden (burden)
- restrictive (limited)
- implies passivity
- disregards aspect of individual identity
–> fails to capture those who qualify for, but unable/unwilling to access support
what are the objectives of user involvement (i.e. SURE)
set of techniques rather than a single approach
(design –> data collection –> analysis –> results)
– User and carer involvement in managing organisational change
– highlighted problems and contributed to service refinement (user-led evaluation of cognitive remediation therapy (CRT))
– generated influential studies and shaped treatment guidelines
– highlighted memory loss, challenged official estimates of patient satisfaction (systemically reviewed electroconvulsive therapy (ECT))
—–»» also implement collaborative management structure
define the user involvement research key methods and its impacts
method —> Translational research
(aims to convert findings from basic research more quickly and efficiently into clinical and healthcare practice)
— knowledge from the bedside must feed back into the laboratory if the translational endeavour is to have real and lasting success.
impacts
— Bridge the translational gap
— Evaluate and enhance the validity of outcome measures
— Assess the accessibility and feasibility of the proposed change
— Improve organisational efficiency
— highlight areas of concern to service user
define the concern with ECT (electroconvulsive therapy – treatment involves send electric current through the brain)
– patient-reported long-term memory loss
– In England patient has to sign an agreement – concern if this consent was given freely
what were the outcome of patient-research Systematic Reviews regarding ECT
– Conventional research showed much higher levels of satisfaction than user research
– New NICE guidelines on ECT developed (on info consent, including the risk of memory loss)
– User research can have a direct impact on national policy
what are the challenges to user-led research
service user testimony devalued by omitted (excluded) by psychiatry knowledge production
there are people who view user research as biased, anecdotal (unreliable) and over-involved
challenged conversational hierarchies and knowledge
collaborative project always led by a professor
excluded from key discussion
denied access to training and resources enjoyed by others
subtle undermining – are you a researcher or patient?
how evidence-based Medicine rank study types based on
strength of their research methods
the precision of their research method
—> Current well-designed systematic reviews and matter
analyses are at the top of the pyramid and that lay expert opinion and anecdotal evidence are at the
bottom
define the current concept of recovery
developed by service users in US and UK
the recovery model is avoiding damaging side effects and assumes greater self-management as it integrated with
service users able to manage complex tasks unaided, and find employment
—»» endorsing a model of individuality may appear to justify the reduction or closure of services
