Sue Read

Effectiveness of appropriately trained nurses in preoperative assessment: randomised controlled equivalence/non-inferiority trial

Abstract Objective: To determine whether preoperative assessments carried out by appropriately trained nurses are inferior in quality to those carried out by preregistration house officers. Design: Randomised controlled equivalence/non-inferiority trial. Setting: Four NHS hospitals in three trusts. Three of the four were teaching hospitals. Participants: All patients attending for assessment before general anaesthesia for general, vascular, urological, or breast surgery between April 1998 and March 1999. Intervention: Assessment by one of three appropriately trained nurses or by one of several preregistration house officers. Main outcome measures: History taken, physical examination, and investigations ordered. Measures evaluated by a specialist registrar in anaesthetics and placed in four categories: correct, overassessment, underassessment not affecting management, and underassessment possibly affecting management (primary outcome). Results: 1907 patients were randomised, and 1874 completed the study; 926 were assessed by house officers and 948 by nurses. Overall 121/948 (13%) assessments carried out by nurses were judged to have possibly affected management compared with 138/926 (15%) of those performed by house officers. Nurses were judged to be non-inferior to house officers in assessment, although there was variation among them in terms of the quality of history taking. The house officers ordered considerably more unnecessary tests than the nurses (218/926 (24%) v 129/948 (14%). Conclusions: There is no reason to inhibit the development of nurse led preoperative assessment provided that the nurses involved receive adequate training. However, house officers will continue to require experience in preoperative assessment.

Evaluation of nurse triage in a British accident and emergency department.

OBJECTIVE--To compare formal nurse triage with an informal prioritisation process for waiting times and patient satisfaction. SETTING--Accident and emergency department of a district general hospital in the midlands in 1990. DESIGN--Patients attending between 8:00 am and 9:00 pm over six weeks were grouped for analysis according to whether triage was operating at time of presentation and by their degree of urgency as assessed retrospectively by an accident and emergency consultant. PATIENTS--5954 patients presenting over six weeks. MAIN OUTCOME MEASURES--Time waited between first attendance in the department and obtaining medical attention, and patient satisfaction measured by questionnaire. RESULTS--Complete data on waiting time were collected on 5037 patients (85%). Only 1213 of the 2515 (48%) patients presenting during the triage period were seen by a triage nurse. Patients in the triage group waited longer than those in the no triage group in all four retrospective priority categories, though differences were significant for only the two most urgent categories (difference in median waiting time 10.5 (95% confidence interval 3.5 to 14) min for category 1 and 8.5 (3 to 12) min for category 2). Responses to the patient satisfaction questionnaire were similar in the two groups except for the question relating to anxiety relating to pain. CONCLUSIONS--This study fails to show the benefits claimed for formal nurse triage. Nurse triage may impose additional delay for patient treatment, particularly among patients needing the most urgent attention.

The Involvement of Users and Carers in Health and Social Research: The Realities of Inclusion and Engagement

In this article we explore the challenges to researchers intending to involve vulnerable populations in health and social care research, and provide evidence-based recommendations to support the proactive inclusion of these populations in the research process. We provide a rationale for the study, followed by the introduction and descriptions of our research experiences (presented as two case studies) to provide a contextual backcloth for the discussion.We highlight the inherent challenges in empowering vulnerable populations in research, based on the combination of our own and other people’s experiences. Collectively, these illustrate and underpin practice issues, relate theory to practice in a meaningful way, and facilitate the recognition of the realities in future development in this important area of involving users and carers. We conclude by providing recommendations for future practice and research development from a wider, international perspective.

Exploring a continuum of support for bereaved people with intellectual disabilities A strategic approach

People strive to make meaning out of the death of their loved ones. People with intellectual disabilities, however, may not be actively involved in death and may therefore experience disenfranchised grief. Bereavement support for this population remains at best inconsistent across the UK. The aim of this article is to further explore a bereavement support model recently developed. A case study is utilized to demonstrate the practicalities inherent in the integrated approach offered. A bereavement support framework can provide a holistic perspective for people with intellectual disabilities when integrated with a systems approach to care delivery. The resultant strategy incorporates practical ideas that address the bereavement needs of people with intellectual disabilities, encapsulating all aspects of current and future care delivery. Finally, core recommendations are offered for consideration.

Using Workshops on Loss for Adults with Learning Disabilities A Second Study

This article is the second in a series that catalogues the experiences of both facilitators and participants involved in a group work opportunity to explore loss and change for 10 adults with learning disabilities. Building upon previous research, the article discusses general issues surrounding loss and change and introduces group work as a vehicle that promotes learning. The rationale inherent in developing and establishing the group is explained, and the methods and procedures used within a qualitative framework to evaluate the group work are introduced. Key emerging themes include issues surrounding the importance of group facilitation (such as boundaries and endings); the diverse loss responses experienced by participants; the powerful stories of loss evoked and associated coping strategies; and how group work can be a powerful medium for learning.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Learning about dying, death, and end-of-life planning: Current issues informing future actions

Knowing about dying and death is a typical part of lifelong learning, gained through personal experience with the death of loved ones, popular culture, and formal education. Sudden and unexpected death aside, adults in the general community can use this knowledge to plan for the manner of their dying (Brinkman-Stoppelenburg, Rietjens, & van der Heide, 2014). Such planning might include will making, advance care planning, enduring guardianship, organ donation, and for some, decisions about the where and how of end-of-life care. People with intellectual disability, however, are often not afforded similar opportunities to learn about or plan for dying (Forrester-Jones, 2013; Wiese, Dew, Stancliffe, Howarth, & Balandin, 2013). The aim of this paper is to outline current thinking around the need for people with intellectual disability to learn about and understand dying and death. With assistance, people with intellectual disability are able to make major life decisions and plans, such as where and with whom to live (Stancliffe et al., 2011), employment, relationships, and marriage (Healy, McGuire, Evans, & Carley, 2009; Timmons, Cohen Hall, Bose, Wolfe, & Winsor, 2011), and so experience the dignity of self-determination, a basic human right (United Nations, 2006; United Nations General Assembly, 1948). It is unclear, then, why they are not routinely afforded similar self-determination about the end of life. People with intellectual disability should know about dying and death, and experience opportunity equal to other members of the community to plan for it (Wiese et al., 2013). Planning, however, requires having appropriate information (Huneke, Gupta, Halder, & Chaudhry, 2012), and there is mounting evidence that many people with intellectual disability have limited understanding of dying and death (Dusart, 2008; McEvoy, MacHale, & Tierney, 2012), few opportunities to learn about it (Ryan, Guerin, Dodd, & McEvoy, 2011b; Wiese et al., 2013; Wiese, Stancliffe, Dew, Balandin, & Howarth, 2014), and thereby restricted ability to plan for it. People with intellectual disability do not routinely learn about death as part of the natural life course, not if they themselves are dying, nor if others they care about are dying (Ryan et al., 2011b; Wiese et al., 2013; Wiese et al., 2014). This occurs against a policy backdrop in Australia recommending that people with disability should be told about their own dying, and have access to the processes equivalent to the general community so that they can plan for death (Ageing, Disability and Home Care,

Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ?

BACKGROUND Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. METHODS We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. RESULTS We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. CONCLUSIONS We demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.

Death and learning disability: a vulnerability perspective

People with learning disabilities often have to cope with death, dying and bereavement without being fully informed of the circumstances and sometimes without being told that death is imminent or indeed has occurred. This paper explores the issues associated with death and dying from the perspective of people with learning disabilities, and considers proactive ways of working in this sensitive area.

Reflecting on patient and carer biographies in palliative care education

This paper describes an evaluation study which explored the impact of the introduction of a selection of stories and biographical literature within a post-registration Palliative Care Diploma (nursing) course. The aim was to explore how this literature could help participants to understand more about palliative care. Participants were asked to reflect, for example, on the kind of language used, why the author wrote the book and the most important message conveyed. The rationale for using this approach is explained, the learning process described and the impact of using this literature evaluated. Participants found this to be an interesting exercise, which aided reflection on the personal meanings of serious illness. Such insights could clearly have implications for reflective practice in palliative care. The paper concludes by offering recommendations for using this kind of literature in a similar learning context in the future. It also considers possible ways of formally evaluating this approach with different health care groups and identifies potential research methods for doing this.