‘Not Knowing What Is Going on’: The Experiences of People With Deafblindness–Dual Sensory Impairment in Australian Hospitals—A Mixed Methods Study

Abstract

When patients with deafblindness–dual sensory impairment (DBDSI) go to hospital, their capacity to know what is happening to and about them is compromised.

This study examines, via a researcher who is an insider with deafblindness, the research question: What are the experiences in hospital of patients with DBDSI, with emphasis on what enables positive experiences and what disables individuals further.

This study’s theoretical framework is underpinned by social relational theory and critical realism. These approaches view society (and the lives of people with DBDSI) as layered, complex and with power differentials that create challenges. The study proposes that research must be action-oriented for a more socially inclusive world. Standpoint methodology privileges the participants’ voices as the expert-knowers of truth and situates the researcher (also an expert-knower and clinician) using these three lenses to refract throughout the doctorate.

The study uses a qualitative, narrative inquiry method to conduct semi-structured interviews with 18 participants, recruited from Australian impairment support groups and via snowball sampling. A small quantitative component, using an Australian patient-experience questionnaire, provides a barometer of hospital performance. Creative nonfiction techniques are used to illustrate the participant’s journey, charting their hospital experience from beginning to end.

The research findings demonstrate a climate of poor experiences; there is a lack of accessibility to information and power exertions in the forms of negative touch, neglect, abuse and dehumanisation. These culminate in participants ‘not knowing what is going on’ and experiencing threats to security and safety.

The findings demonstrate that power exertions result in less care and communication. Less care and communication threaten and assault the ontological security of these patients, creating fear, uncertainty and distress.

Furthermore, the findings situate the expert-knowers—the participants—as being able to guide hospitals, professionals and patients from a position of inaction and indifference to one of knowing what is going: providing accessible formats on request; supplying interpreters as needed; harnessing patient capabilities; embracing technology; and developing and educating staff. These solutions will generate improved health, economic and wellbeing outcomes, resulting in a community where everyone has the potential to know what is going on.