How to reduce stigma and discrimination?
by Vanessa Pinfold
How to reduce mental health related stigma and discrimination? This is a topic that we have been doing research on for several years, most recently working in schools to evaluate the Time to Change children and young people pilot campaign. Time to Change have just released the next phase of their campaign targeting young people and parents in particular, building on the message ‘small things can make a big difference’. The latest campaign message is ‘be ready to talk about mental health with your family’. You can sign up at www.time-to-change.org.uk to get alerts and news of forthcoming activities. Much of the campaign puts people with lived experience centre stage, delivering the message and leading programmes to end discrimination. This is an approach that is very much at the heart of the way we work at the McPin Foundation; working directly with people experiencing mental health problems, their families and friends to improve mental health research. Lots has been written about this approach, also known as ‘social contact’, in the world of stigma research. In 2005 the New Zealand ‘Like Minds, Like Mine’ programme defined key conditions for effective change in their report entitled ‘the power of social contact’:
- Equal status
- The opportunity for individuals to get to know each other
- Information which challenges negative stereotypes
- Active co-operation
- Pursuit of a mutual goal
Broadly, social contact is an approach that underpins anti-stigma and discrimination programmes across the world from Canada to South Africa and India. It has seen the development of programmes to help people ‘come out loud and proud’ which Prof Pat Corrigan speaks about and anyone interested can hear him talk in Manchester on 3rd and 4th March 2016. It has seen research studies evaluate the impact of social contact interventions with school children, police officers, medical school students and the general public. It is an approach that has contributed to books such as “Shunned: Discrimination against people with mental illness” by Professor Graham Thornicroft.
So, when a systematic review was published in the November edition of British Journal of Psychiatry by a group we know well at the IOPPN (Institute of Psychiatry, Psychology and Neuroscience), on ‘how to reduce mental health related stigma and discrimination?’ we were very interested. The review had two aims:
- Synthesise evidence of what is known globally in relation to effectiveness in medium and long term outcomes for interventions addressing mental-ill based stigma and discrimination.
- Synthesise evidence of what is known globally abut interventions delivered in low and middle income countries.
The report authors led by Nisha Mehta provided a summary of their findings and conclusion:
Eighty studies (total number of participants = 422 653) were included in the review. For studies with medium or long-term follow-up those containing social contact (direct or indirect) were not more effective than those without. No studies from low income countries were found.
They concluded: there is modest evidence for the effectiveness of anti-stigma interventions beyond 4 weeks follow-up in terms of increasing knowledge and reducing stigmatising attitudes. Evidence does not support the view that social contact is the more effective type of intervention for improving attitudes in the medium to long term. Methodologically strong research is needed on which to base decisions on investment in stigma-reducing interventions.
(Mehta et al (2015) Evidence for effective interventions to reduce mental health-related stigma and discrimination in the medium and long term: systematic review The British Journal of Psychiatry, 207, 377–384. Extract from page 377).
On scanning the abstract a very familiar feeling came over us; disappointment, and yes, a little despair. Our intuition and experience told us that social contact is a powerful way to reduce stigma and discrimination, however this review suggests otherwise. But is this actually the case? Do we have a lack of evidence into the effectiveness of social contact because of limitations in current research, or because it is actually not more effective in the long term than other interventions?
How to reduce mental health related stigma and discrimination is a pressing question for researchers to help answer because the impact of public attitudes and behaviours are bearing heavily down on people with mental health problems. Recent work by four peer researchers and McPin Foundation staff interviewing 85 people about their experience of mental health related stigma and discrimination identified a framework for how mental health service users appraised whether they were being discriminated against. We found people weighed up their expectations of the situation, the behaviours encountered, the perceived rationale for the person’s response and the impact on them before passing judgement on whether it was discrimination.
The systematic review paper in the British Journal of Psychiatry is an interesting read. It looked at studies across the globe as well as focusing in particular on interventions delivered in low and middle income countries. Social contact tends to be a cost effective intervention model when used well, because there are reservoirs of mental health experience in the community to tap into. However, this is where the conditions for social contact the ‘Like Minds, Like Mine’ project developed are so important. Might some of the studies reviewed be delivering low grade social contact that was not equal status or involved in active co-operation? Having a talk by someone about their health experiences may not be enough.
The authors considered 80 studies and assessed for research quality – including the risk of bias, and use of validated outcome instruments with sound psychometric properties. They concluded that for studies with a follow-up beyond 4 weeks:
Interventions aimed at reducing mental health-related stigma typically had a medium-sized effect on knowledge outcomes and a small effect on attitudinal outcomes, although for both types of outcome statistically non-significant findings were as common as significant ones. There were insufficient data on behavioural outcomes to draw any conclusions on the medium- or long-term effectiveness of interventions to reduce discrimination.
(Extract from page 380)
So where does this leave us? The authors suggest that evidence for social contact is stronger than any other anti-stigma intervention, having a small but positive impact in the short term, but most research is of poor quality. A key challenge is studies are hard to compare because many use bespoke questionnaires rather than validated assessment tools making it harder to compare findings.
Other systematic reviews also draw similar conclusions. So campaigns like Time to Change should continue their current strategies using social contact and help build an evidence base around how to reduce discriminatory behaviours among specific groups such as employers or family members. Our research indicates that we do need different solutions as the responses from a parent and a line manager to a person displaying signs of mental health crisis are different, as is the context in which they are experienced. We produced a poster summarising some of this work which you can read here.
Another strategy we have supported recently is the use of autobiographical books to communicate about mental health and mental distress. Attempting to displace myths and provide honest accounts of living with mental health problems. Linda Gask’s book – The other side of silence – is a recommended read. We have written a blog which you can access and there is an interview with Linda too. Professor Linda Gask – psychiatrist, academic and person living with depression – wrote the book in part to educate others and tackle stigma. We don’t know of a research study that has looked at the impact of memoirs on public attitudes to mental health problems but intuitively it feels useful and we encourage new staff to read personal narratives.
The field of mental health related stigma and discrimination research has grown in the past 10 years. As the Mehta et al 2015 review shows, there is still a lot more to find out if we are to achieve lasting change in public mental health knowledge, attitudes and behaviours. We must keep on trying, and sharing our learning.
Vanessa Pinfold, Research Director, The McPin Foundation