ONE OF USLocal Approach to Fighting Stigma

Project Manager Johanne Bratbo &

Project Coordinator Anja Kare Vedelsby

ZIE MIJ – zonder stigma event

Holland, 31. October 2018

Agenda

ONE OF US – a Danish approach to fighting stigma

• Vision, mission & organisation

• Strategy

• Target areas – highlights

• Evaluation

• Lessons learned

Crazy

The Danish context• Population of 5,5 mil.

• 500.000 people with mental illness

• 8% of young people have a

mental illness

• 415.000 people currently on

antidepressant medication

• Non-psychotic diagnosis growing

fast

• Health profile: Mental health is

declining from 2013 to 2017

• 24% of people with mental illness

currently employed (compared to

44% of people with other

handicaps)

• Annual expenses linked to mental

illness: 55 bill. kr. – only 10% of

this spent on treatment

Vision

To create a better life for

all by promoting

inclusion and combating

discrimination

connected to mental

illness

Partners behind ONE OF US

Mandate:

Focus on knowledge, attitudes and behaviour related to anti-

stigma

No mandate for:

Critisising structure, services and financing services for

people with mental illness

1. phase: 2011-2015

2. phase: 2016-2020

What we are working for

Mission• To increase the knowledge on

mental illness in society

• To reduce the distance that leads to stigmatisation, prejudice and social exclusion

• To increase the comprehension about mental illness in schools, work places, and all other areas where the everyday life take place

Target areas1. Service users and relatives

2. Staff in the health and social sectors

3. Labour market

4. Youth

5. The public and the media

Overall action plan with targetsand target groups for each targetarea.

At least three important reasons to

work with anti-stigma

1. Sensational and negative portrayal of mental illness in the media

- because of a tendency to bring and disseminate the dramatic stories

linking mental illness with danger: ”Mentally ill commit more murders”…

2. Mental illness affects more people

– and more people get a psychiatric diagnosis and problems keeping a job

or staying in the educational system

3. Spread the message of recovery

- that breaks with the story of chronicity since there are current examples of

young people as well as adults still not being told about the hope for

recovery but instead are told that

their illness is chronic and they

will need medication for the rest

of their lives

Overall project model of ONE OF US- inspired by Time to Change

Initiating, coordinating, media campaign and other supportingafforts

Planning, management, localinvolvement and mobilisation

Face to face activities

National level

Regional level

Local level

Common”branding”

National campaigns

Joint efforts

Local initiatives

Board (partners)

Regional group

Local initiatives

Ambassadors

Regional group

Local initiatives

Ambassadors

Regional group

Local initiatives

Ambassadors

Regional group

Local initiatives

Ambassadors

Regional group

Local initiatives

Ambassadors

Localcommittee

Secretariat

Service users

and relativesProfessionals

Labor

market

Young

people

Population

and the

media

Coordinator

group

Psychiatry Network

Service user &

relatives’

organisations.

Communication

network

International

contacts

Regional level

National level

ONE OF US organisational model

Find us here

www.one-of-us.nu

Anti stigma methods

What doesn’t work

1. Traditional communication about

illness and symptoms

- not enough and can lead to

pseudo diagnosing

2. Simplifying problems and

challenges

Comparing mental illness to e.g. a

broken leg or diabetes. It leaves out

the fact that self perception and

relations are notably affected when

you have a mental illness. And this

is where uncertainty and distance

can occur in social contexts.

Anti-stigma methods

What works1. Facilitating identification and

empathy without moralising by

e.g.:

✓ Social contact: Meeting people with

lived experience of mental illness and

dialogue about mental illness

✓ Film, pictures, tv, radio and theater

with people with lived experience of

mental illness

✓ Dialogue via social media (facebook

etc.)

2. Challenging myths with facts

3. Intrude with messages without

being intrusive

Generel strategy

1. ONE OF US activities and materials – developed specifically

for the target areas and target groups based on documented

methods

2. Linking to activities carried out by relevant stakeholders

(ambushing):

✓Saves resources not to plan and carry out all activities ourselves

✓Increases chances of implementation in the long term

✓An opportunity to be present with messages, materials and contact in settings

where people usually wouldn’t expect to be confronted with issues related to

mental illness

ONE OF US ambassadors

– social contact in many different settings✓ People with lived experience of mental

illness

✓ Have the ability to put their ownexperience into perspective. Importantthat they are well on the way in theirrecovery process or in a good place in their lives

✓ Three-days training course with otherambassadors about communicating and targeting their personal stories. Regionallyorganised

✓ Currently app. 100 active ambassadorsnationally

✓ Evaluation in the fall 2014 documents thatbeing an ambassador contributes to onesown empowerment and recovery

Social contact activities - categories

• Presentations for differenttarget groups

• Festivals

• Workshops and training

• Conferences

• Stand

• Development of materials

• Other creative events

In 2017 nationally,

regionally and locally:

121 ONE OF US-activities

(announced on website)

412 ambushing activities

(internal registration)

- 90% included

ambassadors

About 533 actitivites in total

Personal benefit from involvement in the

campaign top 5 – recovery elements!

0 20 40 60 80 100

Improved ability to assesswhen to disclose

Improved ability to copewith prejudices

Increased hope for future

Increased self-esteem

Improved ability to be openabout my experiences with

mental illness

To a high degree

To some degree

”To which degree did/does having a mental illness

dominate your self-perception – before and after

becoming an ambassador in ONE OF US?”

Before

To a highdegree

To somedegree

To alesserdegree

Not at all

After

To a highdegree

To somedegree

To alesserdegree

Not at all

Main activities in ONE OF US

- a selection

General strategy:

• Website: Knowledge, tool kits, films, surveys - available

for all to use

• Merchandise disseminated nationally, regionally and

locally

Service users and relatives

Discrimination survey 2013 & 2015

- some conclusions

➢ Self-stigma is a major problem

➢ Experienced discrimination increases risk of self-stigma

➢ The more someone states that their mental illness

dominates their perception of themselves and in contact

with others, the more experienced (self-)stigma

Service users and relatives

Discrimination survey 2015

0 10 20 30 40 50 60 70 80

Avoided education

Avoided job

Avoided relations

Avoided contacts

Hidden illness

Self stigma

Often Sometimes

Service users and relatives

Self-stigma pilot project in DK

Translated and adapted from ”Narrative Enhancement

and Cognitive Therapy” by Philip Yanos et. al. in 2008

• 20 session manualized group intervention

• Consists of 3 elements:

• Psychoeducation

• Cognitive restructuring

• Story-telling exercises

Narrative element is based on findings from psychotherapy research supporting that narrative change is a major part of the process of identity transformation

Randomised control trial currently carried out in a Western region of Sweden

The labour market

Dialogue cards: 1 example out of 34The back of the card holds case examples and advice from

service users and jobcentre staff

Question for reflection:

What do you regard as the greatest barriers to an inclusive labour

market?

Labour

market

Entrance

The labour market

Promoting openness among men

at construction sites

Translation:

Not everything protects

you from dark thoughts.Often, the first step is the hardest.

Reach out to one another.

On the helmet:ANXIETY

The labour market

Film: The Applicant

Young people

Interactive website ”Break the Silence”

Elements• Voxpop film

• Five interactive films w. guidelines for teachers

• Guidelines for teacher about film analysis, media production and debate

Young people

ONE OF US high school program

• Collaborating partner provides

a nationwide network at high

schools.

• 50 classes each school year

• ONE OF US provides an

assignment that follows the

curriculum requirements for

marketing and sales classes:

Develop a campaign to create

more oppenness about mental

health problems

➢ The teacher decides that

the class should work on

the assignment

➢ ONE OF US offers an inital

session for the class

including a personal story

from a young ambassador

➢ Prizes for the best

campaign proposals

Young people

High school program: Evaluation results

• 71% teachers state that working on the assignment has had an

impact on the climate in the class

• 84% teachers would recommend a fellow teacher to work with the

subject mental health problems

• 48% students stated it was ”interesting” to work on the assignment

• 100% teachers and 75% students have gotten a better

understanding of the significance of more openness about mental

health problems

The public and the media

The Sad Viking

The public and the media

Cooperation with

The Danish Broadcasting Coporation (DR)– Denmark’s public service institution comprising television, radio and

online services

• The TV-program ”How Mad are You?”,

May 2012

• DR-campaign ”Invisibly Ill” Spring 2014,

including ”The World’s Maddest Job

Interview” – 2,7 mil. Danes watched at

least one tv-program, high quality score

• ONE OF US advice and assist in recruiting

for programs in 2015 about loneliness,

forensic psychiatry and suicide respectively

• ONE OF US-ambassadors as cases for

radio- and tv-programs, online news stories

etc.

The public and the media

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

50%

Meget enig Enig Delvis enig Delvis uenig Uenig Meget uenig

18. The tone at the work place and the way we speak about

patients affect our perception of their possibility of recovery.

Professionals in the health and social sectors

Added item: Cultural sensitivity

Strongly Agree Partly Partly Disagree Strongly

agree agree disagree disagree

Professionals in the health and social sectors

Aim of the tool kit

• To create awareness of communication

• To motivate professionals to a dialogue on respectfullanguage and acknowledging culture and social conventions

• That the professionals work in a more goal-directed manner to promote anti-stigma

Translation:

The Dialogue Starter

– bring anti-stigma into focus

Professionals in the health and social sectors

Inequity in somatic health:

The mind is also part of the body

• 15-20 years shorter life expectancy for people with severe mental illness

• Discrimination survey 2015:

32% experienced discrimination in the somatic health system

• Panel survey: 53% experienced physical symptoms being dismissed as mental

• Survey among somatic health professionals: 47% feel like they don’t have

enough knowledge about mental illness

• Stigma seems to play a big part in somatic illness not being treated,

undertreated or overlooked

• Currently ONE OF US is preparing an intervention targeted health professionals

• Momentum!

Professionals in the health and social sectors

Inequity in oral health:Mental health problems should not be tooth problems

• A well-known side effect of a lot of

psychiatric medicine is dry mouth →

dental problems and potentially serious

health problems

• A lack of information and awareness

among professionals

• ONE OF US tooth campaign launched

2018

– Materials: Dental kit, poster, pamphlet,

website

– Visit by ONE OF US including

ambassador to mental health and

psychosocial rehabilitation services

Evaluation tools

• Internationally validatedscales

• Activities registered on website and in internalmodule

• Population surveys

• ONE OF US panel surveys

• Media watch and analysis

• External evaluations

• Statistics and analysis of activity on social media

• Ambassador survey

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Infomedia: ONE OF US mentions in the media 2014

OBS: DR’s Invisibly Ill March-May

• Cultural adaptation of organisation and campaigning is vital

• Important to have visions and missions. But plans should allow

for flexibility and grabbing the moment when opportunities arise

• Social contact/ambassadors has great effect – also for recovery

• Communication training of ambassadors important

• Involvement of relevant stakeholders takes time, patience and

effort but increases quality and ownership

• Identifying relevant criteria for success and documentation of

long term effect is a challenge

Lessons and learning

The Dialogue Kickstarter- one of four films with ambassadors