Dr Phyllis Easton Health Intelligence Manager NHS Tayside

1. Universal precautions recommended: Healthcare and self-care experiences of people with low literacy Dr Phyllis Easton Health Intelligence Manager NHS Tayside

2. I’m like that, ‘Oh no, they’re wanting me to write something,’ start panicking and that seems to take over you and sometimes you’re like that, ‘What was they saying there?’ because the anxiety’s took over what’s going on. (Louise, female, 40s)

3. Literacy levels per 100 adults in Scotland (IALS)

4. Participants scoring level 1 or level 2: Scottish Survey of Adult Literacies 2009

5. You can’t always tell • 36% of patients that resident physicians did not think had literacy problems could not read 6 out of 8 common medical words (Bass et al. Acad Med 2002, 77(10):1039-1041) • Of 58 patients with low literacy, two thirds had not revealed the problem to their spouses and one in five had revealed it to no one (Parikh NS et al. Patient Educ Couns 1996, 27(1):33-39)

6. The hidden population • Learning disabilities • Cognitive or sensory impairment • Language vs. literacy • Suboptimal education • Dyslexia • Perception of own literacy skills • Shame, stigma and coping strategies • Lack of awareness among healthcare professionals of potential low literacy in patients

7. Systematic review inclusion criteria Age 16-65 First language dominant language of resident country Any study that compared groups with differing literacy levels; Literacy measured by validated tool Qualitative studies exploring literacy and health Outcomes – health status; access; self-care preventive or management of health problems

8. Systematic review findings Lower functional or health literacy associated with worse health outcomes May be mediated by difficulties accessing healthcare and poorer self-management of health problems Potential causal links not explored to any extent Very little data gathered or generated from the perspective of those with low literacy Phyllis Easton, Vikki Entwistle, Brian Williams. Health in the 'hidden population' of people with low literacy. A systematic review of the literature. BMC Public Health 2010; 10:459 http://www.biomedcentral.com/1471-2458/10/459

9. Research aims This study was supported by a small grant from the Chief Scientist Office, Scottish Government Health Directorate To understand how low literacy can impact on health and to identify ways in which adverse impact can be mitigated

10. Sample and recruitment • Purposive sample of adult learners recruited through Dundee Adult Learning Centre - Age range 17-59 - Range of literacy needs - Most unemployed or low income employment - Two thirds with long term condition

11. Pathways Low literacy may impact on health through: Impeding access to and engagement with health services Threatening the integrity of clinical consultations Hampering self-care activities

12. Access to and engagement with health services I’ve been to the hospital a few times and they’ve been like ‘Oh you were meant to bring a urine sample’ and I was ‘Oh I didn’t know’ cos I just read the date, the time and the ward Half of the signs are gibberish ... you’re saying ’could you show me, cos I’m not too sure’ and they go ‘Oh we’ve already gave you a leaflet’ I could read the word ‘endoscopy.’ I actually thought an endoscopy was down here [indicating throat]

13. Doctor words 24 letter words Big words that doctors seem to make up Blah blahblahblahblah Gobbledygook Big fancy words

14. Hampering self-care activities • Information leaflets difficult to read and often discarded • Medication instructions too much text, too small text, not understood – dosage, frequency • Difficulties buying OTC medicines I know there’s different Anadins, there’s Anadins for headaches and for backs and I could read Anadin but when I looked at the boxes, I looked for t-oo-th but couldn’t see it at all (Bert, male, 40s)

15. The role of stigma Low literacy may impact on health through: Early experiences of discrimination and stigmatisation Felt stigma affecting clinical engagement and relationships with healthcare staff Effect of low literacy itself and of associated stigma on mental wellbeing

16. Threatening the integrity of clinical consultations Participants reported: • Hiding literacy problems • Feigning understanding • Not asking questions • Not asking for help .... they never explain anything properly. It’s always their own big words and I just say, uh hmm, yeah, okay and I go home and I’m like, ‘I don’t know what that meant.’ (Megan, female, teens)

17. Felt stigma – limiting participation in clinical consultation ... If you’re nervous and you’re pulling back then you’re just going to finish it [the consultation] as quick as you can, short answers, just get out. ‘I don’t know,’ or ‘Yeah,’ ‘No,’ where you wouldn’t say, ‘Well, actually.....’ and be more explicit, you wouldn’t do that. Well, I wouldn’t. I’d want out (Barbara, female, 50s)

18. Felt stigma – compromising relationships with healthcare staff ...... they speak to you like you’re three. Then they wouldn’t leave you alone and then they’re kinda like as if you can’t do nothing for yourself (Katy, female, 20s) Participants anticipated that disclosure would not change clinical treatment but .. staff would judge them, be patronising, think badly of them, look down on them

19. Felt stigma – perceived threat to moral agency ... When something bad does happen or there’s an accident or something when you first go to the doctor or the hospital you are, you’re sittin’ there thinking like ‘Do I tell them do I not?’ but you’re scared to in case then they twist and they think ‘Well this could have happened because you’ve done wrong.’ (Katy, female, 20s)

20. Stigma and mental wellbeing I’m like that, oh no, they’re wanting me to write something, start panicking and that seems to take over you and sometimes you’re like that, what was they saying there, because the anxiety’s took over what’s going on. (Louise, female, 40s) • Negative experiences in the workplace • Impact on social relationships • Stress of covering up, having to be one step ahead in case literacy activity required, fear of low literacy being revealed

21. Recommendations from people with low literacy Don’t assume that people can read or write well Use a variety of media to share information Oral explanation in simple terms Keep forms simple and explain Offer to help without labelling Don’t put people on the spot Send forms out before appointments

22. Universal precautions recommended I think it should be done with everybody even though people are… most people can read and write and stuff but if you was to put it across the board, it would look less of a stigma. If everybody’s got it rather than if nobody’s got it, you know (Ralph, male, 30s) Health Literacy: Universal Precautions Toolkit (AHRQ) http://www.nchealthliteracy.org/toolkit/Toolkit.pdf National Health Literacy Action Plan for Scotland to include development of national toolkit