A national survey of nurses who care for people with intellectual and developmental disability

Abstract

Objective: To describe the roles that Australian nurses play, the breadth of skills that they deploy, and the range of contexts in which they practice. Study design and methods: This cross-sectional study used a descriptive survey where data were collected online using Qualtrics©. Survey respondents were nurses whose primary role was caring for people with intellectual and developmental disability. In addition to demographic data, the main outcome measures were: nursing roles, practice and context. Results: Complete responses were collected from 101 nurses; 78 females and 22 males completed the survey, the majority of whom (n=70) were from New South Wales. The major focus of care was direct assessment and care, followed by supervision of support workers, education, and advocacy for people with intellectual and developmental disability. Physical healthcare was consistent across body systems, as it was for all adaptive behaviour domains. Support for mental illness was more likely to be for depression and anxiety. Nurses liaise with a multitude of health and social agencies as part of their nursing practice. Discussion: This is the first study to capture the roles, practice and contexts of these Australian nurses. Nurses caring for people with IDD play a variety of roles and engage in a vast array of practice related to the physical and social needs of people with intellectual and developmental disability across the whole of the lifespan and in multiple, disparate contexts. Conclusion: It is important for the ongoing care of people with intellectual and developmental disability that the value added by this nursing workforce not be overlooked as disability and health policies evolve.

Swedish registered nurses’ perceptions of caring for patients with intellectual and developmental disability: A qualitative descriptive study

“…Finally, our findings have implications for research, education and practice. For example, Sweden would benefit immensely from following the more recent Australian initiatives within the field of nursing and IDD, that is, by conducting a national mapping study of the educational opportunities within the field of IDD (Furst & Salvador‐Carulla, 2019; Trollor et al., 2016) and performing a national survey (Wilson et al., 2020) to explore how many RNs work in services caring for people with IDD, in what settings they work and their roles in care. As with many other countries, Sweden has a national register for newly qualified nurses; however, how many of those going on to work within the field of IDD are unknown.…”

“…This shift has had consequences for them, for the role of nursing and for the delivery of care. A recent cross‐sectional study found that Australian RNs had a variety of roles and engaged in a considerable range of practices related to the needs of patients with IDD (Wilson et al., 2020). Rather than the delivery of care in institutional settings, in many countries, community care has now been designated as the main provider of healthcare to patients with IDD.…”

Fourth year intellectual disability student nurses’ journey and future work intention: a qualitative study

“…Given that intellectual disability operates on the fringes of the nursing profession and that the size of the specialty of intellectual disability nursing accounts for just 6.75% of the nursing profession [97] there is a need for national leadership from within the profession, health service providers and health agency. Given the evidence of the complex health needs, access issues and health disparities of people with intellectual disability it is essential that we recruit and retain nurses with specialised unique knowledge and skills, and competence to work with people with intellectual disability [98][99][100].…”

The Financial Costs of Registered Nurse-Led Relationship-Centred Care: A Single-Case Australian Feasibility Study

“…The paraphrased progress notes and nonparticipant observation fieldnotes offer a glimpse into the specialised care and management of Derek when his health deteriorates rapidly and seriously. However, they do not fully capture the cycle of observation, assessment, intervention and outcome evaluation that underpins clinical decision making central to the work that RNs perform [28], nor the broad spectrum of tasks undertaken and knowledge and skills applied by RNs caring for people such as Derek on a shift-by-shift basis [12]. Caring for Derek, and people with similar diagnoses and support needs, requires detailed knowledge of human body systems and the interactions between them, pathophysiological pathways and the ways that chronic illness/es can cascade rapidly during an acute exacerbation, the action and interaction of multiple pharmacological agents, and critical insight into the nursing interventions and clinical decision making needed.…”

“…We argue that there is at least one quality alternative to the current models of care delivery, in particular for people with intellectual disability and multiple chronic and complex health problems, and this is a registered nurse-led model of relationship centred care [10], that is not only highly technical, but also uniquely relational in its approach [11]. However, this alternative remains one that while still in practice across some contexts [12], has never been compared to a model of care absent registered nurses (RNs) in terms of financial cost.…”