Universal precautions recommended: Healthcare and self-care experiences of people with low literacy

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Universal precautions recommended Healthcare and
self-care experiences of people with low literacy

• Dr Phyllis Easton
• Health Intelligence Manager
• NHS Tayside

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Im like that, Oh no, theyre wanting me to
write something, start panicking and that seems
to take over you and sometimes youre like that,
What was they saying there? because the
anxietys took over whats going on. (Louise,
female, 40s)
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Literacy levels per 100 adults in
Scotland (IALS)
??????????????????????? Very poor skills. May not be able to determine the amount of medicine to take
???????????????????????????????? Weak skills. Can only deal with well laid out simple material and tasks that are not complex
????????? ????????? ????????? ????????? ????? Skills at or above level required for coping with demands of everyday life
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Participants scoring level 1 or level 2 Scottish
Survey of Adult Literacies 2009
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You cant 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)

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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

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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

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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 10459
• http//www.biomedcentral.com/1471-2458/10/45
  9

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Research aims

• To understand how low literacy can impact on
  health and to identify ways in which adverse
  impact can be mitigated

This study was supported by a small grant from
the Chief Scientist Office, Scottish Government
Health Directorate
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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

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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

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Access to and engagement with health services
Ive been to the hospital a few times and theyve
been like Oh you were meant to bring a urine
sample and I was Oh I didnt know cos I just
read the date, the time and the ward
Half of the signs are gibberish
... youre saying could you show me, cos Im not
too sure and they go Oh weve already gave you
a leaflet
I could read the word endoscopy. I actually
thought an endoscopy was down here indicating
throat
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Doctor words
24 letter words
Big words that doctors seem to make up
Blah blah blah blah blah
Gobbledygook
Big fancy words
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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 theres different Anadins, theres 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 couldnt see it at all (Bert,
male, 40s)
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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

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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. Its
always their own big words and I just say, uh
hmm, yeah, okay and I go home and Im like, I
dont know what that meant. (Megan, female,
teens)
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Felt stigma limiting participation in clinical
consultation
... If youre nervous and youre pulling back
then youre just going to finish it the
consultation as quick as you can, short answers,
just get out. I dont know, or Yeah, No,
where you wouldnt say, Well, actually..... and
be more explicit, you wouldnt do that. Well, I
wouldnt. Id want out (Barbara, female, 50s)
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Felt stigma compromising relationships with
healthcare staff

• Participants anticipated that disclosure would
  not change clinical treatment but
• .. staff would judge them, be patronising,
  think badly of them, look down on them

...... they speak to you like youre three. Then
they wouldnt leave you alone and then theyre
kinda like as if you cant do nothing for
yourself (Katy, female, 20s)
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Felt stigma perceived threat to moral agency
... When something bad does happen or theres an
accident or something when you first go to the
doctor or the hospital you are, youre sittin
there thinking like Do I tell them do I not?
but youre scared to in case then they twist and
they think Well this could have happened because
youve done wrong. (Katy, female, 20s)
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Stigma and mental wellbeing

• 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

Im like that, oh no, theyre wanting me to
write something, start panicking and that seems
to take over you and sometimes youre like that,
what was they saying there, because the anxietys
took over whats going on. (Louise, female, 40s)
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Recommendations from people with low literacy

• Dont 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
• Dont put people on the spot
• Send forms out before
• appointments

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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
everybodys got it rather than if nobodys got
it, you know (Ralph, male, 30s)
Health Literacy Universal Precautions Toolkit
(AHRQ) http//www.nchealthliteracy.org/toolkit/Too
lkit.pdf
National Health Literacy Action Plan for Scotland
to include development of national toolkit