COMMUNICATING WITH PATIENTS:

the barrier of low literacy

ROS DOWSE
Associate Professor : Pharmaceutics
Faculty of Pharmacy, Rhodes University,
Grahamstown
South Africa
Global distribution of HIV
 Background

• Approx 5.2 million people in South Africa are HIV positive

•  920 000 patients are currently taking antiretrovirals (ARVs)

• Pravin Gordhan, Budget Speech 2010, “…by 2012/13, SA Govt is

budgeting to have ZAR 2.1 billion on ARVs.”

“South Africa’s understaffed public health system and the

ballooning cost of treating millions of people for life will pose
daunting challenges to the government’s ambitious goals.”
South Africa redoubles efforts against AIDS
New York Times, May 2010
(  
 Medicine-taking behaviour
 ARVs demand > 95% adherence
 Non adherence may be due to:
 poor comprehension of the medicine instructions
 complexity of the therapy
 inadequate health literacy
 …. a host of other factors…
 Patient information leaflets (PIL) are widely used to
convey health information
 Use in South Africa? Comprehension..?
 Literacy : South Africa

Literacy in South Africa:

8% 18% No Schooling
20%
Some primary

16%
Completed primary

Some secondary

Completed secondary
31% 7%
Tertiary
 Literacy : Eastern Cape

Literacy in South Africa, Eastern Cape:

14% 23% No Schooling

6%

Some primary

Completed primary

Some secondary
20% Completed secondary
30%
7%
Tertiary
 Visuals as communication aids

Visuals…
 attract attention
 present more information in a given space
 simplify complex concepts
 increase the speed of message transfer
 increase learning retention and enhance recall
 are superior to text & verbal communication
(40-80% of verbal info provided by HCPs is forgotten
almost immediately)
Health-related pictorial information
Ways to represent an object
 Interpretation of visuals

 3 interpretation techniques:
 symptomatic – create meaning based on everyday experiences

e.g. laughing faces associated with happiness

 iconic – higher order interpretation e.g. thought balloons
 symbolic – the heart as a convention-based metaphor for love

 Interpretation by low-literate viewers:

 failure to find central focus
 failure to understand abstract elements and conventions (actions
lines)
 literal interpretation (directional arrow as stick)
 failure to integrate elements to create story
 create own stories based on personal experiences
What are these trying to “say”?
 Side effects, ARVs, patients

 Side effects:
 high prevalence, short and long term toxicity
 frequency and severity linked to poor adherence
 significantly impact HRQOL
 early detection essential for management
 Patients inadequately informed about side effects
 SA – no written information provided despite
legal requirements
 Objectives

 To design simple, culturally sensitive pictograms to

communicate antiretroviral side effect information

 To rigorously evaluate the pictograms in a low-literate

South African population
 Method : Qualitative study

 Design workshops with ̴ 130 Pharmacy students

 Rough sketches refined in consultation with graphic

designer.

 Pictograms printed on cards as both large and small

images.

 Group discussions with the target population and

health care providers.

 Pictograms iteratively modified.

 Method : Quantitative study

 11 pictograms tested in 80 Xhosa participants who were

at least 18 years old with maximum of 10 years
schooling

 Individual interviews with interpreters to collect

demographics ; interpretation and acceptability of
pictograms

 Data analysis: frequency data, chi-square and ANOVA to

determine influence of age, gender and education on
interpretation at 5% level of significance
 Results : Demographics

Gender Age Education

Male 33 (41%) 18-29 5 (6%) ≤ Grade 3 21 (26%)
Female 47 (59%) 30-39 16 (20%) Grade 4-7 32 (40%)
40-50 27 (34%) Grade 8-10 27 (34%)
> 50 32 (40%)

 58 (72%) were unemployed

 Nausea and vomiting

Initial
Nausea and vomiting cont……

Final
 Peripheral neuropathy

Initial
Peripheral neuropathy cont…

Final
 Nightmares and hallucinations

Initial

Final
Correct interpretation of pictograms

Nausea and
vomiting 100%
(early)

Abdominal pain
98%
(early)

Headache
95%
(early)

Diarrhoea
93%
(early)
Correct interpretation of pictograms

Skin rash
93%
(early)

Lipoatrophy
83%
(early)

Lipodystrophy
80%
(late)
Correct interpretation of pictograms

Fever
73%
(early / late)

Peripheral
73%
neuropathy
(late)

Dizziness
65%
(early)

Nightmare
48%
(early)
 Conclusions
 Interpretation involves significant cognitive load
 Familiar experiences best interpreted e.g. vomiting.
 Body posture and facial expressions important.
 Education, age and sex did not significantly influence
interpretation.
 Design process for successful pictograms:
 multi-stage, iterative
 culturally sensitive
 conducted in collaboration with target population
 Information design: objectives

• To develop patient information leaflets (PILs) for ARV

Regimens 1a, 1b, 1c and 1d
• To investigate, in HIV/AIDS patients on ARVs, the
influence of illustrated information materials on
knowledge and understanding of HIV/AIDS and of
ARV-related information
• To investigate the influence of age, gender and
educational level on knowledge
 Illustrated labels
Stage 1 : Materials development - labels

Medicine labels were designed for regimens 1a, 1b, 1c and 1d

Stavudine (d4T)
Lamivudine (3TC) Nevirapine (NVP) Zidovudine (AZT)
EFV
 Results

Overall knowledge score

Control group (standard care)

68.9%

Experimental group (Illustrated labels and PIL)

86.1%

Significance : p<0.001
 Association with knowledge
Control Experimental
(p value) (p value)

Age 0.028 0.004

Education 0.008 <0.001
Gender 0.643 0.992

 The at-risk patients for poor knowledge

• < than grade 3
• > than 50 years
 Conclusions

• Illustrated materials improved knowledge

• General HIV/AIDS information: knowledge good
• ARV related information: variable
• Side effect information: poor
• Patients and healthcare providers enthusiastic
about labels and PILs
• A definite need identified for well designed
information for public sector HIV/AIDS patients
 Where to from here?

• Pictograms: possible applications

• Include in leaflets for patients?
• Ask opinion of HIV patients on ARVs ?
• Group sessions with patients at clinics?
• Nurse education?
• Community health worker education ?

• Leaflets: introduce into more clinics at local,

district, provincial and national level
 Acknowledgements

 Funding
Rhodes University
Center for AIDS Research, University of California, San Diego.
 Susan Abraham, graphic artist, for drawing the pictograms.
 Prof Sarah Radloff for statistical assistance.
 Our participants for their valuable input.