Can adults with low literacy understand shared decision making questions? A qualitative investigation

Danielle M Muscat; Heather L Shepherd; Suzanne Morony; Sian K Smith; Haryana M Dhillon; Lyndal Trevena; Andrew Hayen; Karen Luxford; Don Nutbeam; Kirsten McCaffery

doi:10.1016/j.pec.2016.05.008

Can adults with low literacy understand shared decision making questions? A qualitative investigation

Patient Educ Couns. 2016 Nov;99(11):1796-1802. doi: 10.1016/j.pec.2016.05.008. Epub 2016 May 9.

Authors

Affiliations

¹ The Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW, Australia; Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney School of Public Health, The University of Sydney, NSW, Australia.
² Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney School of Public Health, The University of Sydney, NSW, Australia; Psycho-oncology Co-operative Research Group (PoCoG), School of Psychology, The University of Sydney, NSW, Australia.
³ Psychosocial Research Group, Prince of Wales Clinical School, Faculty of Medicine, University of New South Wales, NSW, Australia.
⁴ Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Concord Clinical School, The University of Sydney, NSW, Australia; School of Psychology, The University of Sydney, NSW, Australia.
⁵ School of Public Health and Community Medicine, University of New South Wales, NSW, Australia.
⁶ Patient-based care, Clinical Excellence Commission, NSW, Australia.
⁷ Office of the Vice Chancellor, University of Southampton, Southampton, UK.
⁸ The Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW, Australia; Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney School of Public Health, The University of Sydney, NSW, Australia. Electronic address: kirsten.mccaffery@sydney.edu.au.

PMID: 27344226
DOI: 10.1016/j.pec.2016.05.008

Abstract

Objective: Participation in shared decision-making (SDM) may be difficult for adults with lower literacy. Tools to support consumers to engage in SDM are rarely designed for or evaluated with adults with lower literacy and/or poor English language.

Methods: Qualitative interviews were conducted with 26 adults with lower literacy and/or poor English language skills to investigate (a) whether participants where able to read and understand two generic SDM consumer support tools (Smart Health Choices and AskShareKnow question-sets), (b) which question-set was easier for participants and, (c) perceived usefulness of the question-sets and barriers to use. Interviews were analysed using Framework Analysis.

Results: Participants had difficulties understanding terms embedded within both the AskShareKnow and Smart Health Choices questions. Our findings suggest that the AskShareKnow question-set was easier for our participants than the Smart Health Choices questions, and clarification using a structured response was reasonably effective. While participants appreciated the usefulness of the questions, they identified important barriers to use.

Conclusions: Generic question-sets alone are not sufficient to support SDM for adults with lower literacy and/or poor English-language skills.

Practice implications: To ensure that SDM is accessible to all, we must consider how best to support adults with low literacy and/or poor English-language skills to participate in this process.

Keywords: Consumer; Low literacy; Patient involvement; Qualitative; Questions; Shared decision making.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Aged
Aged, 80 and over
Choice Behavior
Communication
Comprehension*
Decision Making*
Decision Support Techniques*
Female
Health Literacy*
Humans
Interviews as Topic
Language
Male
Middle Aged
Patient Participation*
Physician-Patient Relations*
Qualitative Research