The lived experiences of registered nurses caring for people with intellectual disability in the acute care hospital context in Australia

Aim: The aim of this study was to explore the phenomenon of the lived experiences of registered nurses (RNs) in caring for people with intellectual disability (ID) in the acute care hospital context in Australia. Background: People with ID experience inequitable access to quality healthcare, which is a human rights issue. These inequities are a recognised global phenomenon that impact on life expectancy and quality of life for this population. People with ID are a diverse group with complex healthcare needs who are living longer, frequent hospital regularly, and require extra support during their acute care stay. One of the barriers to quality healthcare is lack of knowledge and understanding of ID by nurses. The near absence of ID content in pre-registration nursing curricula plays a part in the poor understanding of the varied and complex healthcare needs of this vulnerable population. It is important to understand the experiences of acute care nurses when providing care in the absence of any meaningful ID education, given the extra skills required to facilitate appropriate and quality nursing care. A preliminary integrative literature review identified no studies using phenomenology as a research methodology had been undertaken on this issue in Australia or elsewhere in the world, which provided a rationale for this study to be undertaken. Methods: Husserl’s (1859-1938) descriptive transcendental phenomenology was the methodological approach underpinning this thesis. Data were obtained through phenomenological interviews with twelve RNs across four Australian States and Territories. Data from the recorded interviews were transcribed and analysed in accordance with Colaizzi’s (1978) seven-step method of data analysis. Findings: The four emergent themes that were explicated from the data were: i) Caring in the dark, ii) Feeling out of one’s depth, iii) Seeing the person as worthy, and iv) Falling forward in the dark. Participants in this study identified inadequate undergraduate preparation for responding to the needs of people with ID, which left them feeling compromised in their ability to deliver safe, appropriate, and responsive quality nursing care. Without the right information to perform their duties, participants were forced to learn on the job, which challenged their ability to meet their legal and ethical obligations as a nurse. Adding to their distress was the rationalisation of organisational resources that impeded participants’ capacity to fulfil their responsibilities as a professional nurse. Further extensive literature reviews were undertaken in relation to the findings of the study to identify what was shared knowledge and what this thesis contributed to new knowledge. Conclusions: The Australian nursing profession is currently not meeting the educational needs of the RN workforce that compromises nurses’ ability to provide optimal and equitable healthcare to the consumer with ID. Failing to provide comprehensive nurse education is unsafe, unprofessional, and unresponsive to evidence-based practice. The Australian healthcare system is also failing to meet the needs of the consumer with ID by not recognising the different requirements of this diverse and heterogenous group, rendering them ‘invisible’ within the hospital system. Results of this study suggest that the United Nations Convention on the Rights of Persons with Disabilities (UN, 2008) directives of 2006 are not being upheld, which contravenes the human rights agenda on the basis of disability discrimination. Recommendations for education, policy development, clinical practice, and future research are offered.