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.</p

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

Background People with intellectual disability (ID) experience poorer health outcomes than the general population. One of the barriers to quality healthcare is lack of knowledge and understanding of ID by nurses (Trollor et al., 2017). 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 leading to negative attitudes and subsequent shortfalls in the provision of quality care (Howie et al., 2021). Rationale/Justification It is important to understand the experiences of acute care RNs when providing care in the absence of any meaningful ID education, given the recognised extra skills required to facilitate appropriate and quality nursing care. An extensive search of the literature determined no studies have been conducted concerning the lived experience of RNs caring for people with ID in the acute care hospital context, both internationally and in Australia, which provided a rationale for this study to be undertaken. Expected Outcomes Knowledge generated from this proposed study will provide new insights and understanding available to clinicians and health care services. Through an evidenced-based approach, such knowledge has the potential to guide nursing practice, nurse educators and curriculum designers, and policy makers at all levels of health service provision, including the Council of Deans for Nursing and Midwifery. Aims/objectives/research question The aim of this study was to explore the lived experiences of registered nurses (RNs) in caring for people with ID in the acute care hospital context in Australia. The study research objectives were: i) to understand the lived experience of RNs, as described by them, in caring for a person with ID, and ii) to describe how individuals made sense of their experience in caring for a person with ID. The research question posed was: What is the lived experience of registered nurses caring for people with intellectual disability in the acute care hospital context in Australia? Research design and methods The methodological approach chosen to best answer the research question was descriptive phenomenology informed by the works of Husserl (1859-1938) and adopting Colaizzi’s (1978) seven-step data analytical framework. Participant details The number of participants is expected to be between 10 to 15. The inclusion criteria are Registered nurses who: •were involved in the direct care of a person with ID in the past four years. •have worked in a private or public hospital, or who have worked in community settings involving admissions and discharges of people with ID in an acute care facility in any State or Territory of Australia. Participants will be asked to attend two interviews. The first interview will take one hour or more. The second interview is to confirm that data analysed from the first interview is true and correct and will take about 30 minutes. Interviews will be conducted face-to-face, on Skype, or by phone at a mutually agreed place and time. Interviews will be audio recorded and later transcribed by a professional transcriber. Process of Recruitment An advertisement will be placed in a number of nursing magazines or journals that have a national circulation inviting interested potential participants to be part of the study. The advertisement will contain information about the study, level of expected involvement, and contact details of the researcher, inviting interested registered nurses to make contact by phone or by email. Results/outcomes/future plans Participants will be sent a summary of the written report if consent is given. Dissemination of findings will be through a thesis, publications in peer reviewed journals, and at national and international conferences

Use of healthcare consumer voices to increase empathy in nursing students

Nurses need to be well prepared to address the needs of a diverse population and facilitate positive experiences in an equitable and inclusive approach to care. The aim of the study was to determine whether the integration of consumer lived experience interviews into the content of a first-year course influenced empathy in nursing students. A one group pre-test, post-test design was used. A convenience sample of first-year undergraduate nursing students (N = 32) from a regional Australian university was recruited for the study. The pre and post tests were conducted using the Kiersma Chen Empathy Scale and t-tests performed to analyse the data. Results showed overall that nursing students demonstrated moderate levels of empathy; pre-test score of (M = 75.53; SD = 5.76). After the intervention the post-test results showed that there was a statistically significant increase in students' empathy towards vulnerable, disadvantaged and stigmatised population groups. The healthcare consumer voice has the potential to strengthen current teaching practices that promote caring behaviours in nursing students

Standards for practice in intellectual and developmental disability nursing: A Delphi study

Background: The practice standards of specialist areas of nursing need to be distinctive and reflect contemporary practice. In the absence of intellectual and developmental disability content in curriculum design at both undergraduate and postgraduate levels, nurses practising in this specialty area need a clear set of standards that guide their practice. Aim: To redevelop a contemporary set of practice standards by combining findings from a three-year research project with the Delphi technique to determine consensus. Methods: The Delphi technique was applied to a draft set of eight standards that were developed based on research generated by the project. Data were generated through two Delphi rounds conducted via Qualtrics© online surveys. Data analysis consisted of descriptive statistics for percentage agreement, and content analysis for qualitative data. Findings: Response rate was 72% for round one and 77% for round two. Consensus was reached for each of the eight standards in round one. Consensus was reached for the schema, following round two. Discussion: The revised set of specialty standards offers points of distinction that sets them apart from other practice standards by reflecting the values, knowledge and skills required to work in intellectual and developmental disability nursing. Conclusion: A combination of research evidence and the Delphi technique was useful in determining a new framework for practice standards that reflected current practice. Differentiating specialty practice standards offers identity and guidance for nurses practicing in specialised areas of nursing. The revised standards are a useful resource in policy development and education design

What are the health and well-being outcomes of using an e-bike as an alternative mode of transport?

Background: Little research has been undertaken in Australia that examines the health and well-being effects of using electric bikes (e­-bikes) as an alternative mode of transport, (Langford et al. 2016). A systematic review by Bourne et al. (2018) suggests the more research is needed to investigate the phycological impacts of using e-bikes. Objectives: To assess the potential for e-bikes to reduce commuter car travel in the Noosa Shire and to assess the health and well­being impacts related to e-­bike usage. Methods: Mixed Methods approach 20 participants (BMI between 25-50, inactive, drove to work regularly) 12 peeks Physical health assessments Bicycle safety workshop Survey tools *RAND: Measures of Quality of Life short form *Subjective Happiness Scale *DASS 21 *Active Australia Survey (eight questions) Semi structured interviews Results: Mental health benefits (feeling happy, decreased levels of stress, depression and anxiety) Increased levels of physical activity (high use - increased by 16hrs 54min/w; low use – increased by 7hrs 40 min/w) Influenced family and friends (thereby influencing mental health of others) Conclusions: In summary, riding an e-bike increase levels of happiness and improves mental health. Given that levels of stress, depression and anxiety are reduced as a result of using an e-bike, encouraging the use of e-bikes would benefit the mental health of Australians

The quandary of registered nurses untrained in adult intellectual disability nursing when caring for this diverse patient group in acute care settings: An integrated literature review

Aims and Objectives: To critically appraise relevant literature on the lived experiences of registered nurses caring for adults with intellectual disability in the acute care setting in Australia to determine current knowledge and gaps in the literature. Background: People with intellectual disability have the right to the highest attainable health care the same as everyone else. However, inequities still exist in the delivery of health care across the globe, including Australia that result in poorer health outcomes for this population group. Part of the problem is a lack of understanding of the complexities of ID care due to an absence of ID specific content in undergraduate curricula. Design: Integrative literature review. Methods: Electronic databases were searched for relevant empirical and theoretical literature. Additional articles were found by reviewing reference lists of selected articles resulting in ten articles for review. Selected articles were critically appraised using JBI critical appraisal tools. Data were analysed using comparative thematic analysis. PRISMA checklist completed the review. Results: Two main themes emerged from the data that informed the gap in knowledge: (a) Defining nursing practice; and (b) Confidence to practice. Conclusions: There was limited qualitative research published on the topic. International studies revealed that a lack of understanding of the ID condition due to inadequate education left registered nurses feeling underprepared, unsupported and struggling to provide optimal care. No studies were located on the phenomenon within the Australian context. A study exploring the lived experiences of RNs in Australia is needed to offer a deeper understanding of the phenomenon that will help inform practice. Relevance to practice: Including ID care in national undergraduate and postgraduate nursing curricula must become a nursing educational and professional priority to support nurses more fully in their practice to ensure patients with ID receive the highest attainable standard of nursing care. © 2021 John Wiley & Sons Lt

The courage to care : an innovative arts-based event to engage students and the local community to reflect on Australian nurses' roles in the First World War and after

There is a large body of work that documents the history of the nursing profession and the experiences of nurses during significant historical eras such as the First World War. Yet learning about nursing history is commonly a tiny, or absent, component in the undergraduate nursing curriculum. This paper discusses an innovative project that had multiple aims. A primary aim was to engage nursing students and educators in a project that valued nursing history by integrating it into an event to celebrate International Nurses Day. As the paper will explain, other aims were in organising the event so that it capitalised on particular creative arts strengths within the faculty, offering cross-disciplinary connections, engagement and appreciation. A Readers' Theatre event, involving academics and students in nursing, creative arts and education, was conceived, developed and performed for the community. The theme was the experiences of First World War nurses and how they encapsulated values important to nursing today – the 6 Cs – which guide high standards of nursing. The 6 Cs are care, compassion, competence, communication, courage and commitment. We called the Readers' Theatre “The Courage to Care”, and this involved a 4 month process of script development, event planning and a performance. This process and outcomes were evaluated, prompting a reflection on the strengths and challenges of working in this creative way to engage a wide group of stakeholders to advance the profession of nursing

Current practice for genetic counselling by nurses: An integrative review

Aim: To examine current practice of genetic counselling by nurses. Background: Recent debate argues that genetic counselling is a specialist advanced practice role, whilst others argue it is the role of all nurses. Current evidence is required to determine if genetic counselling could be included in all nurses' scope of practice. Design: Integrative literature review. Data Sources: A search of electronic databases (CINHAL, Medline, PubMed, Scopus), and reference lists published between January 2012 and March 2017, was undertaken. Review Methods: Studies were critically appraised for methodological quality using the Critical Appraisal Skills Programme. Data from each study were extracted and categorized according to their primary findings. Results: The inclusion criteria were met in 10 studies. Main findings were identified: role of genetic counselling, current knowledge, need for further education, and client satisfaction with nurse genetic counsellors. Conclusion: This paper concludes that some nurses do engage in genetic counselling, but how they engage is not consistent, nor is there consensus about what should be the scope of practice. Further investigation into credentialing, role recognition support and education for nurse genetic counselling are strongly recommended. As nurses are widely available, nurses can make a significant contribution to supporting those affecte d by genetic problems. © 2018 John Wiley & Sons Australia, Lt

Demographic profile of the intellectual disability nursing workforce in Australia: Findings from a national survey

Background: Nurses provide technical and relational skills that are ntegral to the care of people with intellectual disability (ID) in Australia. However, little is known about the demographic profile of this section of the nursing workforce. Method: Administration of a survey to nurses whose primary role it is to care for people with ID nationwide Results: This brief report provides a description of the demographics of participants in the national survey. Of 101 participants, 78% were women and the mean age was 53.21 years. Participants held a variety of educational qualifications to prepare them for the care of people with ID. Conclusion: The findings suggest the need to consider the future unmet needs of people with ID given the ageing of this workforce. The ongoing support needs of people with ID depend upon the ongoing presence of nurses well prepared to meet the need of this group of people

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

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 development 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