Researching health literacy and numeracy as social practicesStephen Black & Keiko YasukawaUniversity of Technology, Sydney

Health Literacy Network: Crossing Disciplines, Bridging Gaps, University of Sydney, 26 November 2013 1

Health literacy and everyday lives: some examplesJeff lives in the UK and describes himself as an alcoholic with depression and a disability. He’s in his early 40s and doesn’t work. He lives in sheltered housing and attends a number of support organisations for his drug addiction, psychological problems and respite care.

Researcher: Do you ever have to fill in any forms when you go to these various places(meaning the respite care, the day centres, the psychiatrists etc)?Jeff: No I don’t fill in forms. They (referring to his key workers) do that, all I do is sign it.Researcher: So do you ever read any of those things they put in the medicine packets, you know all those information…?Jeff: No but me key workers does sometimes.Researcher: So they do it for you?Jeff: Yes because the writing is so small I can’t see the writing, so they do it for me.

It became very clear through the course of the interview that Jeff’s support workers (his key workers, as he calls them) removed any need on his part to engage directly with texts. Jeff was happy with this.

Papen, U & Walters, S 2008 Literacy, learning and health, London: National Research & Development Centre. Page 41

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Health literacy and everyday lives

(A patient with a long term health condition attending an information session) I don’t do it myself but whoever is with me will write things down. And so we can remember what they’ve actually said because I never remember and when you are there and they are saying really scary things you don’t remember. (Edwards et al. 2013)

(An Iranian man new to the UK accessing health services)Mehdi’s father accompanied him to the doctor and dentist, as he spoke more English than Mehdi and was more familiar with the local accent. Mehdi’s mother went to the pharmacy to buy him some medicine for his cold and she read the dosage and contraindications for him. A neighbour, also from Iran, passed on information about dentists and gave them several dentists’ telephone numbers when Mehdi needed to register with one. (Papen & Walters 2008: 37)

(Comment on Arabic-speaking Australians accessing health)Participants also relied on their children and family members to purchase their medicines from the pharmacy and interpret English verbal or written information about medicines. (El Samman et al. 2012)

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Health numeracy & the negotiation of risks 4

Perzynski, AT, Terchek, JJ, Blizen, CE & Dawson, NV (2013) Playing the numbers: how hepatitis C patients create meaning and make healthcare decisions from medical test results, Sociology of Health & Illness, 35(4), 610-627.

‘It was high (73), and he

tested me again for

hepatitis. I was

diagnosed with Hep C in

November. I have had

another ALT test and it

went up to 146. God

certainly has a way of

getting my attention.’ (p.

619)

Medical tests can help patients understand risks and provide an apparent island of certainty in a sea of confusion and frustration. However, understandings of numerical results seem to go through a translation process whereby numeric techno-scientific symbols and replaced by more lay-friendly words and phrases that are integrated into the patient’s socio-cultural context. Numeric risks become feelings. The clinical meaning of a test result can be retained or partially or wholly lost in translation. (p 623) 5

Parsons, E & Atkinson, P (1992) Lay constructions of genetic risk, Sociology of Health & Illness, 14(4), 437-455.

‘Pamela: So does that mean that I’m not a very high risk? The doctor thought for a moment and said – “well, we consider 10 per cent to be high so you must be moderately high”’ (p. 444)

Pamela was trying to translate formal probability analysis into something that was meaningful to her. The doctor was defining her carrier risks as ‘moderate’ and yet her sister, with a risk of less than 1 per cent, had given birth to an affected boy. Mathematical probability appeared meaningless in the light of her personal experience. (p. 444)

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Health literacy and numeracy from a social practices approachHealth literacy and numeracy is:

• always ‘situated’ in the everyday lives of individuals and communities

• not just a matter of an individual’s reading, writing or maths skills

• often collective and collaborative. In other words it can be seen as ‘distributed’ across social networks

• inclusive of an affective dimension and is shaped by and shapes people's identities

• not necessarily a ‘problem’ for people• dependent on local culture 7

A social practices definition

A quote from Papen, U and Walters, S (2008) Literacy, learning and health, London: NRDC

Health literacy is shared knowledge and understanding, it resides in the family, the neighbourhood and the social network of a patient. An individual’s health literacy could thus be seen as the sum of what she knows and is able to do on her own and what she is able to achieve with the support from friends, family and other significant people in her environment. (p.57)

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ReferencesEdwards, M, Wood, F, Davies, M and Edwards, A (2013) ‘Distributed health literacy’: longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition, Health Expectations, online 22 May 2013 doi: 10.1111/hex.12093

El Samman, Chaar, B, McLachlan, A & Aslani, P (2012) Medicines and disease information needs of older Arabic-speaking Australians, Australian Journal on Ageing, online doi: 10.1111/j.1741-6612.2012.00587.x

Papen, U & Walters, S (2008) Literacy, learning and health, London: NRDC

Parsons, E & Atkinson, P (1992) Lay constructions of genetic risk, Sociology of Health & Illness, 14(4), 437-455.

Perzynski, AT, Terchek, JJ, Blizen, CE & Dawson, NV (2013) Playing the numbers: how hepatitis C patients create meaning and make healthcare decisions from medical test results, Sociology of Health & Illness, 35(4), 610-62

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