title: Can adults with low literacy understand shared decision making questions? A qualitative investigation.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  Generic question-sets alone are not sufficient to support SDM for adults with lower literacy and/or poor English-language skills.
  
  
  
  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.
authors.affiliation: 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.
authors.forename: Danielle M
authors.initials: DM
authors.lastname: Muscat
authors.affiliation: 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.
authors.forename: Heather L
authors.initials: HL
authors.lastname: Shepherd
authors.affiliation: 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.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Morony
authors.affiliation: Psychosocial Research Group, Prince of Wales Clinical School, Faculty of Medicine, University of New South Wales, NSW, Australia.
authors.forename: Sian K
authors.initials: SK
authors.lastname: Smith
authors.affiliation: 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.
authors.forename: Haryana M
authors.initials: HM
authors.lastname: Dhillon
authors.affiliation: 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.
authors.forename: Lyndal
authors.initials: L
authors.lastname: Trevena
authors.affiliation: School of Public Health and Community Medicine, University of New South Wales, NSW, Australia.
authors.forename: Andrew
authors.initials: A
authors.lastname: Hayen
authors.affiliation: Patient-based care, Clinical Excellence Commission, NSW, Australia.
authors.forename: Karen
authors.initials: K
authors.lastname: Luxford
authors.affiliation: Office of the Vice Chancellor, University of Southampton, Southampton, UK.
authors.forename: Don
authors.initials: D
authors.lastname: Nutbeam
authors.affiliation: 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.
authors.forename: Kirsten
authors.initials: K
authors.lastname: McCaffery
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002755:Choice Behavior; D003142:Communication; D032882:Comprehension; D003657:Decision Making; D003661:Decision Support Techniques; D005260:Female; D057220:Health Literacy; D006801:Humans; D007407:Interviews as Topic; D007802:Language; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D010817:Physician-Patient Relations; D036301:Qualitative Research
keywords: Consumer; Low literacy; Patient involvement; Qualitative; Questions; Shared decision making