Australian Hospital Experiences of People Living with Deafblindness or Dual Sensory Impairment: The Report Card

Abstract

Gaps abound in the literature about what happens when people living with deafblindness or dual sensory impairment (DBDSI) go to the hospital. Anecdotally, from my lived experiences and professional work, as well as from within communities, stories are told about how hazardous it is to be a patient in an Australian hospital for those living with DBDSI. This paper outlines a quantitative component of a mixed-methods study examining the intricacies of these experiences. The research objective was to discover what hospital interactions looked like for patients living with DBDSI. A constrained question set was used, namely, the Australian hospital experience question set (AHPEQS 2017). It asked patients about key factors in their hospital interactions. The results form a distressing snapshot of care and communication interactions. Experiences of flouting protective conventions, dehumanisation, neglect, discrimination, disparate care, inaccessible consent forms, and a lack of communication predominate. The participants reported experiences from multiple different hospitals, so these findings suggest a broad culture of failing to provide patient-centred care and accessible-to-the-patient communication. The findings showcase the urgency for more research and remedial actions to be undertaken by both professionals and institutions.