EXIST Study · National survey findings

EXperIences of oral health STigma

What it feels like to live with oral health stigma, in the words and numbers of 333 adults across England.

Authors

Doughty, J.1   Engali, B.1*   Evans, B.1
Paisi, M.2   Rodriguez, A.3

Affiliations

1 University of Liverpool, England
2 University of Plymouth, England
3 University of Dundee, Scotland

Background

A harm that hides in plain sight

Oral health stigma is a unique phenomenon that harms and dehumanises. Until now, most research has focused on individual oral health conditions, or on other stigmatised characteristics, rather than on the underpinning phenomenon and theory of oral health stigma itself. The EXIST study set out to change that, by exploring the lived experience of oral health stigma among adults in England.

Who took part

333 adults from across England

333
participants surveyed
60.4%
were female
89.7%
were White British
28.0%
reported poor or very poor oral health

Most came from South West England (26.9%) and the East Midlands (21.4%). Around a third reported fair oral health (35.3%). Missing back teeth (39.5%) and staining (37.9%) were among the most commonly reported concerns.

The findings

How stigma shows up

Stigma turns into everyday behaviours of hiding, avoiding and self-blame. Among the adults surveyed:

1in 9

avoid socialising altogether

1in 2

avoid smiling in photographs

1in 4

cover their mouth when speaking or smiling

1in 5

avoid eating with others

1in 4

have avoided the dentist for fear of being judged

1in 4

worry people think less of them because of their teeth

2in 3

see poor oral health as a personal failure

2in 3

feel pressured to have the perfect smile

2in 5

blame themselves for the state of their teeth

In their words

What people told us

It has impacted on my career path. I was trained as an actor, but couldn't fill acting roles as my braces didn't fit the roles. It's impacted my mental health on a daily basis.

Survey participant

I have missing teeth and it affects me to the point I haven't had a relationship since they started having problems, and that's almost 10 years.

Survey participant

I'm fully ashamed of my teeth. I can't go out without constantly thinking not to show my teeth, so I hardly open my mouth to talk.

Survey participant
How the study was done

Methods

Design and sample

Study design
A mixed-methods phenomenological study using a sequential explanatory design. This poster presents the quantitative aspect: a cross-sectional questionnaire survey, designed with people with lived experience of oral health stigma.
Sample
Adults who self-identified as experiencing oral health stigma.

Recruitment and analysis

Recruitment
Distributed widely online and in community and dental settings across England, so a response rate cannot be determined.
Analysis
Quantitative data analysed descriptively; free-text responses analysed with content analysis.
Ethical approval
NHS HRA, reference 25/WM/0016.

What the quantitative data also did

  • Helped recruit participants for follow-up interviews
  • Enabled a bespoke interview topic guide to be developed
  • Informed an interdisciplinary coding workshop bringing together psychology, human geography and sociology
  • Will be combined with the qualitative data to build a novel understanding of oral health stigma
Conclusion

Shame keeps people away from the care they need

Experiences of oral health stigma cause harm through concealment behaviours that affect socialisation and prevent people from engaging with dental services. Shame-awareness and trauma-informed practice may offer real opportunities to prevent triggering stigma and shame at the dentist.