Aileen Collier

Finding the patient in patient safety

In the last decade, the field of patient safety has grappled with the complexity of health-care systems by attending to the activity of frontline clinicians. This article extends the field by highlighting the activity of patients and their carers in determining the safety of these systems. We draw on data from three studies exploring patients’ accounts of their health-care experiences in Australia and internationally, to show how patients and carers are currently contributing to the safety of their own care. Furthermore, we emphasise the importance of patient–clinician collaboration in ensuring the success of these activities. We argue that it is no longer sufficient to discuss if patients should be involved with ensuring their own safety. Given that patients are already involved, we propose a new conceptualisation of safety and systems that acknowledges their involvement and supports patient–provider collaboration to achieve safer care.

Making decisions about delirium: A qualitative comparison of decision making between nurses working in palliative care, aged care, aged care psychiatry, and oncology

Background: Delirium has a significant impact on nursing practice from diagnosis and management, with under-detection and variable management of delirium being international problems. This study aimed to explore nurses’ assessment and management of delirium when caring for people with cancer, the elderly or older people requiring psychiatric care in the inpatient setting. Methods: Participants in this qualitative study were nurses working in Australian public hospital inpatient dedicated units in palliative care, aged care (geriatrics), aged care (geriatric) psychiatry and oncology. Semi-structured interviews were used to explore nurses’ views about specific areas of delirium assessment and management. Purposive sampling was used and interviews conducted until thematic saturation reached. A thematic content analysis was performed from a grounded theory perspective. Results: A total of 40 participants were included in the study. The analysis revealed four broad analytical themes: (1) superficial recognition and understanding of the operational definition of delirium or recognition of delirium as a syndrome; (2) nursing assessment: investigative versus a problem solving approach; (3) management: maintaining dignity and minimizing chaos; and (4) distress and the effect on others. Discussion: Nurses have limited knowledge of the features of delirium regardless of their specialty discipline. Delirium was uniformly identified as a highly distressing experience for patients, families and staff alike. The majority of nurses had a superficial understanding of delirium management, and adopted a task-orientated approach aimed at addressing the more noticeable problems. These findings have implications for both education and knowledge translation. Innovative approaches are needed to align health professional behaviours with best evidence delirium care.

The meaning of home at the end of life: A video-reflexive ethnography study

Background: While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored. Aim: The aim of this article is to critically examine the meaning of home for dying patients and their families. Design: The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period. Setting/participants: Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians (n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes. Results: Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning this relationship: ‘No place like home’; ‘Safety, home and the hospital’; ‘Hospital “becomes” home’; ‘Home “becomes” hospital’; ‘Hospital and “connections with home”’; and ‘The built environment’. Conclusion: Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.

Researching Reflexively With Patients and Families Two Studies Using Video-Reflexive Ethnography to Collaborate With Patients and Families in Patient Safety Research

Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods.

Implementation of a pilot telehealth programme in community palliative care: A qualitative study of clinicians’ perspectives

Background: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems’ imperatives for improved service delivery within current budgets. Clinicians’ experiences and attitudes play a key role in the implementation of any innovation in service delivery. Aim: To explore clinicians’ perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. Design: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. Setting/participants: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. Results: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. Conclusion: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Dying in Australian hospitals: will a separate national clinical standard improve the delivery of quality care?

While it is commonly stated that for most people the preferred place of death is their own homes, the actual reality is that most people will die in hospitals. This is both by choice and necessity. However, for many, the care that they receive would not necessarily align with their expectations. The need to improve the quality of health care at the end of life has been acknowledged by the Australian Commission for Safety and Quality in Healthcare with the release of a recent discussion paper. It is presumed this is a prelude to the release of another quality standard specifically for end of life care. The aim of this paper is to question whether such a standard is likely to result in the hoped for improvements in care.

Aging With Purpose: Systematic Search and Review of Literature Pertaining to Older Adults and Purpose:

Purpose can provide a sense of intentionality, guide behavior to achieve personal aims and living objectives, and may offer insight into how and why certain people remain healthy over time. A review of the literature sought to identify contemporary research pertaining to purpose and older adults. Thirty-one studies were selected for evaluation based on inclusion criteria. Research outcomes suggest that greater reported purpose is related to a range of better health and well-being outcomes for older adults. With few exceptions, the literature demonstrates that purpose declines with age. Nevertheless, the potential to experience purpose persists across the life span, by providing opportunities for older adults to continue contributing roles, participate in meaningful activities, and sustain their social value and sense of relevance. Further research could explore how purpose is experienced by the oldest-old age-group, those living within noncommunity settings, and people with age-related cognitive impairment such as dementia.

A qualitative exploration of patient and carer perspectives on pancreatic exocrine insufficiency due to pancreatic cancer

Pancreatic exocrine insufficiency (PEI) is a condition that commonly occurs due to pancreatic cancer and is known to cause weight loss and have a negative impact upon quality of life. The purpose of this qualitative study is to explore patient and carer perspectives on the experience of PEI in pancreatic cancer and gain a better understanding of the implications of treatment. Semi-structured interviews were conducted with 14 patients and 9 carers recruited from palliative care and medical oncology services in the Adelaide region. Sampling continued until saturation of key themes. A critical thematic analysis was conducted. The study findings corroborated the findings from a previous study in quality of life and pancreatic cancer1 and also extended clinical knowledge on the impact of the symptoms that patients and carers described. The presence and severity of PEI may be underestimated by using the presence of weight loss, steatorrhoea and abdominal pain to the clinical syndrome of PEI. Where patients and carers described treatment failure with pancreatic enzyme replacement therapy, new findings gave explanations for this. The results from this study suggest that further research needs to be done to compare the traditional clinical model assessing the presence of PEI in pancreatic cancer with a systematic approach to evaluation to increase the accuracy of clinical diagnosis, accessibility of treatment and monitoring of therapy. Reference Gooden HM, White KJ.Pancreatic cancer and supportive care – pancreatic exocrine insufficiency negatively impacts on quality of life. Support Care Cancer 2013;27(7):1835–1841