W2-T2 Nothing about me without me: growth of the expert by experience Flashcards

1
Q

what was the main argument of closing the asylum by both left and right wing

A

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

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2
Q

what are the academic’s interest in antipsychiatry

A

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

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3
Q

why 1960s have been regarded as a critical decade in British psychiatry

A

– 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

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4
Q

what is the problem that arises with closing down the hospitals

A

– 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

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5
Q

how deinstitutionalisation / decarceration change mental health care

A

provided momentum for community-based studies
patient-authored accounts
activism

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6
Q

describe two users control research projects in 1990s

A
  1. strategies for living – looked at peoples’ own strategies for dealing with mental distress (2000)
  2. 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

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7
Q

what happened after the creation of the Service User Research Enterprise, SURE in 2001

A

marked the transition of user-led research into academia

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8
Q

How SURE emerged

A

from the efforts of its first director, Professor Dame Til Wykes, to champion service user involvement in all aspects of research

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9
Q

what SURE do

A

conducts research to test the effectiveness of services and treatments from the perspectives of people with mental
health problems and their carers

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10
Q

What are other service users’ research groups established besides SURE

A

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

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11
Q

define the difference in between service us / consumer and survivor of psychiatry

A

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

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12
Q

what has been the challenge for service user co-collaboration and co-production of research

A

role blurring
misconception

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13
Q

define three types of service user (Hugh McLaughlin) and the meaning

A

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)

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14
Q

how the term service user has been criticized

A
  • 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

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15
Q

what are the objectives of user involvement (i.e. SURE)

A

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

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16
Q

define the user involvement research key methods and its impacts

A

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

17
Q

define the concern with ECT (electroconvulsive therapy – treatment involves send electric current through the brain)

A

– patient-reported long-term memory loss
– In England patient has to sign an agreement – concern if this consent was given freely

18
Q

what were the outcome of patient-research Systematic Reviews regarding ECT

A

– 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

19
Q

what are the challenges to user-led research

A

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?

20
Q

how evidence-based Medicine rank study types based on

A

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

21
Q

define the current concept of recovery

A

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