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.<br /

Faecal impaction: older people's experiences and nursing practice

A number of authors have identified the paucity of evidence available to inform community nursing practice in relation to faecal impaction. Little is known of its incidence or its impact. In an attempt to address this, this article reports part of an extensive descriptive survey in Australia that sought to explore the experience of, and response to, constipation of older people living in the community. The focus here is the participants’ experience of extreme constipation in the form of faecal impaction and obstipation (obstinate constipation). Faecal impaction was found to cause great discomfort and distress, often leading to obstipation. The imperative for self-management of constipation was strong, and laxative use frequent. However, manual evacuation was often necessary, either by self or others. This article discusses the results in relation to a recent emergence of concern in the US and UK about how faecal impaction and obstipation should be treated by community nurses

Constipation and the preached trio: diet, fluid intake, exercise

A survey of 90 older community-dwelling people's constipation experience is reported in part. The focus is the participants’ efforts to use diet, fluid intake and exercise as preventive strategies. Most feel that they have been preached to in this regard. However, constraints may prevent full adherence to the trio and although some have gained from diet adjustment, the majority is disillusioned about these strategies. Nurses should be aware that scientific and medical literature is discussing evidence that dietary fibre intake preventing constipation is not proven, that fluid intake does not necessarily determine stool bulk or speed colon transit time, and that there is no proven link between exercise levels and chronic constipation.http://www.sciencedirect.com/science/journal/0020748

Mixed methods evaluation research for a mental health screening and referral clinical pathway

Rationale: This study is an exemplar of mixed method evaluation research for development of a clinical pathway.Aim: To develop and evaluate an evidence-based, feasible mental health screening and referral clinical pathway for Department of Veterans&rsquo; Affairs-funded community nursing care of war veterans and war widows in the Australian context.Methods: Mixed methods were applied to formulate and clinically evaluate an appropriate pathway. The pathway was applied at urban and rural sites for the nursing care of 97 war veteran and war widow clients. Evaluative data were collected from clients, their informal carers, community nurses, and general practitioners. Chart auditing and pre-post measures were undertaken. Collaboration occurred with an interdisciplinary design team.Results: The final modified six-page pathway includes use of validated screening tools (Kessler Psychological Distress Scale [K10]) and Alcohol Use Disorder Identification Test, appropriate referral information, directions for support and health-promoting education, and evidence-based guidelines. Implications for Practice: The clinical pathway is a useful, tested, evidence-based guide for generalist community nurses to identify and suitably respond to common mental healthcare needs of war veterans and war widows. The pathway provides outcomes acceptable to clients and their carers, nurses and doctors.Conclusions: This study provides an evaluated clinical pathway for generalist community nurses to screen for mental health difficulties, make appropriate referrals as required and to support war veteran and war widow clients. However, the study also shows how research can be used to develop and evaluatepractical, evidence-based clinical pathways.<br /

Quality of life issues identified by palliative care clients using two tools

Reported are issues impacting upon the Quality of Life (QoL) of 59 palliative care clients within a district nursing service. These issues reinforce the emerging conceptualisation of QoL as being subjective and multidimensional. The issues were identified during a trial of two QoL assessment and measurement tools, the Client Generated Index (CGI) and the McGill Quality of Life (MQOL). In this era of considerable concern about QoL for the terminally ill, the article's intent is to present the QoL issues identified, the grades of impact and priority for improvement of the issues according to the clients, and to discuss these aspects. This information can inform the assessment of palliative care clients (the CGI tool was found ideal for such an assessment), and may also inform further research on the QoL of palliative care clients

Using caregivers-as-proxies to retrospectively assess and measure quality of dying of palliative care clients

This study evaluated two quality-of-life assessment and measurement tools, the Client Generated Index and the McGill Quality of Life questionnaire, within palliative care nursing. Primarily tested was the feasibility of the tools to assess clients’ QOL at admission and, if necessary, when their condition altered. The reliability of the tools has previously been ascertained. Additionally, quality of dying during the last two days of life for 14 participants who died during the study was assessed and measured retrospectively by these tools, using the client’s nominated care-giver as proxy for the client. It is this second focus that we report on here. The reasons why proxy assessment and measurement of client QOD was not useful or feasible are discussed