The participation of volunteers in contemporary palliative care

Historically, in Australia, individuals with widely differing interests, skills and values have engaged collaboratively, in a voluntary capacity, to establish services to assist persons experiencing particular need or hardship. Gradual recognition and acceptance by the State of its social responsibilities to citizens with various needs in areas of health, welfare, education and others, have seen the provision of a range of statutory services available to all Australians. Volunteer participation in the delivery of modern health services, therefore, is not usual; palliative care is an exception rather than a norm. This article explores the relationship between understandings of death and dying in Western culture and the participation of volunteers in contemporary palliative care. The author presents a view that volunteers provide a distinctive contribution to the quality of care delivery and to enrichment of the social environment of the wider community also. The topic is of relevance to all nurses and especially those involved in the care of dying persons and of their families.

Fall risk factors and the nature of falls in inpatient oncology and palliative care settings

Using a prospective design, this study examined falls risk factors and the nature of patient falls in oncology and palliative care settings. Two hundred and twenty seven patients admitted to the oncology and palliative care units at a private hospital participated in this study. Of these, 34 patients had a fall and 193 patients did not have a fall. Twenty-four nurses who attended to patients who fell were interviewed. Findings revealed that, when compared to patients who did not fall, fallers had a significantly higher mean age; were assessed as more physically dependent using the Eastern Cooperative Oncology Group scale; were less alert and more confused; were more likely to have responded incorrectly to orientation to person, time and place; were weaker pre-fall in arm muscle strength; and were more fatigued. These factors are worthy of further exploration to determine whether they are more sensitive than the currently used falls risk factors used in oncology and palliative care settings.

Diabetes management in patients receiving palliative care

A literature review revealed no evidence-based guidelines specific to managing diabetes in the context of palliative care. The purpose of the current project was to describe the management practices of doctors and nurses caring for people with diabetes and advanced disease. Palliative care doctors, palliative care nurses, endocrinologists, and diabetes nurse educators participated in this study. A two-phase project was undertaken: 1) two focus groups, and 2) a cross-sectional survey using a self-completed questionnaire. The focus group and questionnaire data identified that doctors and nurses used a range of practices and blood glucose testing frequencies to control blood glucose based on experience and not according to a robust evidence base. Implications for practice include the importance of collaboration between diabetes and palliative care specialists, and the need to develop clinical management guidelines.

Developing a web-based information resource for palliative care : an action-research inspired approach

Background : General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website.

Method : The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166).

Results : Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers).

Conclusion : Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.

Addressing online information needs in palliative care : an action research-inspired approach

Whereas user participation has been embraced worldwide as a means to provide better patient outcomes, the implementation of formative, action research approaches in online health information has remained under-explored. The purpose of this study is to present an action research-based methodology that allows the scoping of health information and design needs in complex, multi-user online environments. The project's four main stages were informed by an iterative, formative approach involving continuous expert and user evaluation. The study suggests that an action research-inspired formative approach can be successfully employed to generate user-participation. Moreover, sustained user-participation effectively addresses most quality issues regarding content, language, and accessibility raised in the recent literature. The paper concludes that an action research approach geared to develop online health resources deserves more attention.

Implementing a journal club in a palliative care setting : a link in the chain of evidence-based practice

This paper describes the implementation and evaluation of a journal club in a privately funded palliative care unit. Journal club meetings were initiated as part of a quality improvement process to foster the uptake of evidence-based practice. Nurses were presented with research articles each month and discussions were conducted focussing on methodological considerations of the research and implications of the research for patient care. The maximum number of attendees at any one meeting was nine and the minimum number was four. Overall, evaluations were positive about all aspects of the meetings. Attendees found that the selected articles were relevant, providing new information, stimulated discussion and reflection on clinical practice and encouraged further reading. One of the positive aspects of the meetings identified by participants was the facilitation style that enabled discussion in a safe and supportive environment. An important outcome of the meetings is the potential to explore evidence-based practices relevant to palliative care and to implement new practices or revise existing ones. As part of this process practice changes and clinical guidelines have been implemented. A dedicated facilitator with university links and a supportive organisational culture promoted club meetings as a practical way to provide clinical nurses with the opportunity to explore evidence-based research in the area of palliative care.

Being a palliative care volunteer

In this research volunteers' experiences in the field of palliative care were explored from the perspective of volunteers. The study made visible the skills, values and wisdom inherent in enactment of the volunteer role and provided new insights into the nature of relatedness between clients / families and volunteers.

Intervention for depression among palliative care patients and their families : a study protocol for evaluation of a training program for professional care staff

Background: Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described.
Methods and Design: A randomised controlled trial will be implemented across two palliative care services to evaluate the “Training program for professional carers to recognise and manage depression in palliative care settings”. Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention.
Discussion: This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members.

A Steinian approach to an empathic understanding of hope among patients and clinicians in the culture of palliative care

Aim. This article presents a discussion of empathy in the context of human person, reason and hopes in the clinical setting.

Background. Empathy was introduced to nursing as part of an ethical and philosophical foundation for caring. It helped to solve the tension and meet the demands that empathy placed upon nursing practice.

Data sources. This article is based on two studies undertaken between 2008 and 2010 to understand the concept of hope and empathy among people with terminal cancer and doctors who care for them. Doctoral dissertations and theses of Edith Stein (1916–1917), Marianne Sawicki [Body, Text and Science. The Literary of Investigative Practices and the Phenomenology of Edith Stein (1997) Kluwer Academic Publisher, Dordrecht], and Sister M. Judith Parsons (2005) have been used to examine: ‘the essence of acts of empathy’, ‘the constitution of the psycho-physical individual’ and ‘empathy as understanding of intellectual persons’. CINAHL, MEDLINE and PROQUEST have provided further supporting data.

Discussion. Steinian empathy requires that we use affective resonance, cognitive understanding and distance, as we grasp another person’s emotional and situational reality while in the caring role as nurses.

Implications for current nursing. Steinian empathy is about recognizing a lived experience and standing side-by-side with that person. Nurses can transmit this knowledge to enable and support courage and wisdom to reduce feelings of helplessness when caring for people with terminal illness.

Conclusion. Not only is empathy a safe and permissible emotion, it is the linchpin to a caring patient–nurse relationship and we must embrace this.