The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

The palliative care link nurse role in nursing homes: barriers and facilitators

Aim. This paper is a report of a study to explore link nurses' views and experiences regarding the development, barriers and facilitators to the implementation of the role in palliative care in the nursing home.
Background. The delivery of palliative care in nursing homes is widely advocated; one approach is to develop the link nurse role to cascade good practice and training to nurses and other care staff to enhance patient care.
Method. A descriptive qualitative study was conducted with a purposive sample of 14 link nurses from 10 nursing homes in Northern Ireland during 2006. Three focus groups, composed of all Registered Nurses currently acting as link nurses in their nursing homes participated, and the data were audio recorded, fully transcribed and content analysed.
Findings. The link nurse system shows potential to enhance palliative care within nursing homes. However, link nurses experienced a number of difficulties in implementing education programmes. Facilitators of the role included external support, monthly meetings, access to a resource file and peer support among link nurses themselves. Lack of management support, a transient workforce and lack of adequate preparation for link nurses were barriers to fulfilling this role.
Conclusion. Whilst palliative care link nurses can improve care for residents in nursing homes, consideration must be given to overcome the types of barriers identified in order to enable the link nurse system to function effectively. © 2008 The Authors.

I can't get a breath: experiences of living with advanced chronic obstructive pulmonary disease

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.

General Nurses’ Experiences of End-Of-Life Care in the Acute Hospital Setting

Approximately 90% of the UK population spend some time in hospital in their final year of life, and more than half of the population die in hospital. This review aims to explore the experiences of general nurses when providing end-of-life care to patients in the acute hospital setting. Nine studies were identified through a literature search, and each was then analysed and evaluated until themes emerged. Six themes were drawn from the literature: lack of education and knowledge, lack of time with patients, barriers arising in the culture of the health-care setting, communication barriers, symptom management, and nurses' personal issues. The themes cause concern about the quality of end-of-life care being provided in the acute care setting. The literature appears to be consistent in the view that terminally ill patients are best cared for in specialised care settings, such as palliative care units and hospices. However, increasing demands on health services will result in greater numbers of dying patients being admitted to the acute hospital setting. It is therefore paramount that general nurses' educational needs are met to ensure they develop clinical competence to provide high-quality holistic end-of-life care.

Service user and carer participation in an endoscopy nursing programme

This article reports an initiative to improve students' insight into service user and carer experience of endoscopy, particularly those with severe disability, such as spinal cord injury. This insight has the potential to improve the information provided and level of person-centred care in an endoscopy service. It was evident in the feedback from the classroom encounter that the teaching and learning strategy had a positive outcome, which will allow us to integrate the approach into future curriculum development and delivery, bringing the lived experience from the service user and carer perspective into the classroom. Students engaged in discussion and used their reflective skills to develop sensitivity to those with physical disability and complex needs requiring endoscopy procedures.

The perspectives of ‘disengaged’ students in the 14–19 phase on motivations and barriers to learning within the contexts of institutions and classrooms

In addressing educational disengagement, government policy in England focuses primarily on raising the age of educational participation, promoting vocationalism and directing resources at the population of young people not engaged in any education, employment or training (NEETs). However, ‘disengagement’ is a more fluid and dynamic concept than policy allows for and is visible within a wide range of students, even those deemed to be engaged by their presence in education and educational settings. This paper presents students’ accounts of their educational experiences which suggest that the context of the classroom, student–teacher relationships, peer relationships and pedagogical methods used in classrooms are salient factors in understanding engagement.

Parents' experiences of caring for their infant following surgery in the neonatal period: A literature review

Previous research with parents of preterm and low-birth weight infants admitted to the Neonatal Intensive Care Unit (NICU) has indicated the following: (i) parents are at risk of experiencing stress associated with the NICU environment; (ii) parents are at risk of short- and longer-term psychological distress; and (iii) the family is at risk of longer-term stress and strain. However, parents of infants admitted to the NICU for surgery are an under-researched population. This paper provides an overview of the current literature in relation to this issue. The results highlight the paucity of research conducted with parents of infants admitted to the NICU for surgery. A number of gaps and limitations were also identified in the current literature, including a lack of examination why some parents cope better than others, and a focus solely on parents of preterm and low birth weight infants. To conclude, further research with parents of infants who had surgery in the first few weeks of life is needed. Such information could help inform clinicians caring for these infants and their families, and would enable identification of those parents and families most at risk.

Better together: Interprofessional Education in Medication Safety

Background: The importance of actively working with other professionals, as part of a single team, is well embedded in discussions relating to effective healthcare. The need for effective teamwork specifically in relation to patient safety is also widely acknowledged; however healthcare has traditionally been poor at building teams and professional groups tend to function semi-autonomously and autocratically.1
Objective: This study aims to gain the views and experiences of students from nursing, pharmacy and medicine involved in an interprofessional workshop in medication safety.
Setting and methods: Interprofessional workshops involving students from nursing, pharmacy and medicine were delivered using case studies involving medication incidents. Focus groups were used to investigate participant’s views and experiences of the workshop.
Results: Focus groups were completed with 22 students. Five main themes were identified from the focus group data relating to medication safety; these were increasing confidence, insight into roles, improving skills, culture of responsibility and application to future practice.
Conclusions: This study represents a model for delivery of training that has demonstrated improvement in the students’ attitudes towards team working and is a first step towards introducing team working into the medication safety program. The programme continues to run using live and virtual workshops.

1. Leape LL. A systems analysis approach to medical error. J Clin Eval Clin Pract. 1997. 3, 3, 213-222.

Boost your word power: Katherine Rogers and Maggie Bennett describe a tool that can help students prepare their life science assignments

Anatomy and physiology refers to the structure and function of the human body. Students studying this module, known as life science or bioscience, develop knowledge of the structure (anatomy) and function (physiology) of the body that can be applied in clinical practice and support other study courses.