Emotional toil: psychosocial care in rural settings for patients with cancer

Aim. This paper is a report of a study to identify experienced rural nurses' perceptions of key issues related to the provision of effective psychosocial care for people with cancer in rural settings.

Background. A cancer diagnosis has a major impact on psychological and emotional wellbeing, and psychosocial support provided by nurses is an integral part of ensuring that people with cancer have positive outcomes. Although, ideally, people with cancer should be managed in specialist settings, significant numbers are cared for in rural areas.

Methods. Using a qualitative descriptive approach, three focus groups were conducted in 2005 with 19 nurses in three hospitals in rural Victoria, Australia.

Findings. Participants indicated that a key issue in providing psychosocial care to patients with cancer in the rural setting was their own 'emotional toil'. This Global Theme encapsulated three Organizing Themes– task vs. care, dual relationships and supportive networks – reflective of the unique nature of the rural environment. Nurses in rural Australia are multi-skilled generalists and they provide care to patients with cancer without necessarily having specialist knowledge or skill. The fatigue and emotional exhaustion that the nurses described often has a major impact on their own well-being.

Conclusion. In the rural context, it is proposed that clinical supervision may be an important strategy to support clinicians who face emotional exhaustion as part of their cancer nursing role.

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.

The study protocol of: 'initiating end of life care in stroke: clinical decision- making around prognosis'

 Background: The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.
Methods/design: This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.
Discussion: This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

Prioritization of psychological well-being in the care of diabetes: moving beyond excuses, bringing solutions

Jones and colleagues recently made a plea for the prioritization of psychological well-being in diabetes care [1]. Such calls to action began over 20 years ago with the 'St Vincent Declaration' guidelines [2]. A 'plea' two decades later emphasizes that this paradigm shift is a long, slow burn. In the 21st century, people with diabetes are now adding their powerful voices via social media, advocating for better psychological support, as active consumers (and constructive critics) of health care [3]. We can learn considerably from organizations such as Cancer Voices (www.cancervoicesaustralia.org) - they demonstrate how consumer representation and involvement in research agendas, policy and service provision play an integral part in shaping holistic health care. This article is protected by copyright. All rights reserved.

An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care

AIM: To conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care.

BACKGROUND: End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process.

DESIGN: Integrative literature review.

DATA SOURCES: MEDLINE, CINAHL Plus, PsychINFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000 - May 2015.

REVIEW METHODS: A five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organised and analysed. Convergent qualitative thematic synthesis was used.

RESULTS: From an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative (n=15); quantitative (n=4); mixed methods (n=2); case study (n=2); and discourse analysis (n=1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories.

CONCLUSION: Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualisation of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family centred end-of-life care is required making the nursing contribution at this time more visible.