I have not come here because I have nothing better to do: The lived experience of presenting to the emergency department for people with a psychosocial disability and an NDIS plan—A qualitative study

Abstract

Almost 60 000 people have a psychosocial disability (PSD) and a National Disability Insurance Scheme (NDIS) plan. As PSD can be a fluctuating condition, people with a PSD and an NDIS plan, at times, may require crisis care and present to the emergency department (ED). This national study explored the experiences of people with a PSD and an NDIS plan when presenting to the ED. To understand the unique lived experience of people with a PSD and an NDIS plan, semi‐structured interviews were conducted with 24 people between March and November 2022 and were analysed thematically. A lived experience advisory group was engaged as part of the research team. Participants were asked about their experiences in the ED including barriers to therapeutic care and what worked well. Participants reported emotional distress caused by receiving a biomedical rather than a person‐centred mental health response. A previous mental health history overshadowed diagnostic decisions and most participants interviewed stated they would not choose to return to the ED. Half of the participants spoke of one presentation only where needs were met. Four main themes emerged from the data: (a) Diagnostic overshadowing; (b) Judgement and stigma; (c) Waiting without hope; and (d) If things went well. This study provides evidence of the unique lived experience of people with a PSD and an NDIS plan when presenting to the ED. The results highlight the need for clinicians in the ED to understand the complexity and nuances of supporting people with a PSD. Recommendations for a person‐centred care approach are provided. Alternative support options for this group of people need to be explored.

‘Everything would have gone a lot better if someone had listened to me’: A nationwide study of emergency department contact by people with a psychosocial disability and a National Disability Insurance Scheme plan

“…This can be partly motivated by extreme workload pressures and/or passing costs on to other sections of the health system (Australian Institute of Health and Welfare, 2016). This information deficit leaves people being returned to a situation that had caused them to initially present to the ED, resulting in some participants of this study stating they are extremely hesitant to present to an ED in future, and if they do so will not declare their NDIS plans (McIntyre et al., 2023).…”

“…This study reports a lack of communicating from the ED with support services, specifically the NDIS. Post‐discharge, if EDs do communicate with other services, it is usually limited to primary health care, outpatients or community mental health teams (McIntyre et al., 2022, 2023). Along with providing ED clinicians with clear guidance around what the NDIS provides, information sharing between both systems was something participants reported would be helpful.…”

“…This qualitative descriptive study is part of a larger mixed methods study (McIntyre et al., 2021) and reports on the outcomes of 24 semi‐structured qualitative interviews (McIntyre et al., 2023). Qualitative description with thematic analysis is well suited to lived experience research (Creswell, 2013; Vaismoradi et al., 2013) with the aim being to inform policy, clinical practice and improve service integration (Braun & Clarke, 2019; Vaismoradi et al., 2013).…”

“…These later recommendations have guided the discussion of results (see Data S1). The formulation of research questions guiding this project has been reported elsewhere (McIntyre et al., 2023). As a framework, the COREQ standards were used for reporting (Tong et al., 2007).…”