Representation and reporting of communicatively vulnerable patients in patient experience research

PURPOSE: To apply a human rights lens to measuring patient experience. Specifically, to determine if the perspectives of communicatively vulnerable people have been included in the patient experience research used to inform the development of the Australian Hospital Patient Experience Question Set (AHPEQS). METHOD: Thirty-nine qualitative studies on patient experience that informed the development of AHPEQS were critically appraised in terms of reporting on: population of interest, eligibility criteria, communicative demands of the research and communicative supports provided. RESULT: Eleven of 39 studies included sufficient information about the population to determine that communicatively vulnerable people would have been approached to participate. Three of these studies explicitly excluded people who were communicatively vulnerable, and four did not report on the provision of any communication supports to enable communicatively vulnerable people to participate. CONCLUSION: Intentional exclusion and/or a lack of communication supports restrict the rights of people who are communicatively vulnerable to express their opinions about what matters to them in hospital. Inadequate reporting of qualitative research on patient experience also makes it difficult to determine if the perspectives of people who are communicatively vulnerable have informed the development of the AHPEQS.