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 /

Dignity and Deferral Narratives as Strategies in Facilitated Technology-Based Support Groups for People with Advanced Cancer

This paper examines the value of facilitated telephone and online support groups for palliative care. Telephone interviews were conducted with twenty people living with advanced cancer who had participated in either a telephone or online support group facilitated by the Cancer Council Victoria, Melbourne, Australia. Two dominant participant narratives emerged: a focus on dying with dignity or an interest in deferring discussion of death and dying to focus on the present. Despite the different approaches, participants found the technology-based support groups to be accessible and safe environments in which to discuss difficult topics in privacy. Technology-based strategies provide opportunities for health professionals to provide social and emotional care to more people by moving beyond individualised care and facilitate peer-to-peer support at the end of life, especially to those with specific needs. Such options are feasible for palliative care services to set up and acceptable to a group of clients, especially for younger clients or those socially or geographically isolated

Robust estimation of bacterial cell count from optical density

Optical density (OD) is widely used to estimate the density of cells in liquid culture, but cannot be compared between instruments without a standardized calibration protocol and is challenging to relate to actual cell count. We address this with an interlaboratory study comparing three simple, low-cost, and highly accessible OD calibration protocols across 244 laboratories, applied to eight strains of constitutive GFP-expressing E. coli. Based on our results, we recommend calibrating OD to estimated cell count using serial dilution of silica microspheres, which produces highly precise calibration (95.5% of residuals &lt;1.2-fold), is easily assessed for quality control, also assesses instrument effective linear range, and can be combined with fluorescence calibration to obtain units of Molecules of Equivalent Fluorescein (MEFL) per cell, allowing direct comparison and data fusion with flow cytometry measurements: in our study, fluorescence per cell measurements showed only a 1.07-fold mean difference between plate reader and flow cytometry data

Ten lessons for developing a health information website

This paper outlines ten lessons derived from the development of a palliative care website, www.pallcarevic.asn.au. The following program elements contributed to the success of the project: (1) peer and stakeholder participation; (2) response to a significant need; (3) networking skills; (4) administrative skills; (5) mediation of conflicts; (6) project management skills; (7) sourcing of good evidence; (8) iterative evaluation involving users and stakeholders; (9) iterative expert evaluation; and (10) a well thought through sustainability strategy.<br /

Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants' homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers' ability to provide effective care

Hearing voices: Qualitative research with postsecondary students experiencing mental illness

Vocational Education and Training (VET) students experiencing mental illness have been described as one of the most vulnerable student groups in the Australian post-secondary sector. This vulnerability can be attributed to the impacts of illness, the oft-reported experiences of stigma and discrimination, and low educational outcomes. There is increased pressure for researchers and policy-makers to listen to the voices of the most disadvantaged learners to aid design and delivery of the Australian VET system, yet little knowledge exists in the sector about how this could and should occur. This paper critically reflects on some of the ethical issues and methodological challenges recently encountered in our research with VET students experiencing mental illness. Through rich description of our strategies for student recruitment and managing participant vulnerability, we aim to contribute to the literature informing qualitative research with VET students experiencing mental health issues. This is a timely contribution to the current debate on strategies designed to listen to the voice of the disadvantaged learner in order to inform teaching and learning and achieve better student outcomes

Nonfinite loss and emotional labour: family caregivers' experiences of living with motor neurone disease

Aim and objectives: \ud This paper aims to add to nurses' knowledge concerning the challenges, losses and emotional labour family caregivers face when providing care for people living with motor neurone disease. \ud \ud Background: \ud While previous caregiver research presents the salient losses such as social, financial and personal relationship loss among caregivers, the nonfinite, unpredictable losses faced every day by caregivers and the emotional labour experienced are not effectively represented and have not been explored for people living with neurodegenerative, life-limiting illnesses such as motor neurone disease. \ud \ud Design/Methods: \ud Semi-structured interviews, ecomap diagrams of social support networks and observational field notes were all used to collect data for this ethnographic case study. Data were collected at three time points over a ten month period with eighteen primary caregivers and once during that period, with six peripheral caregivers.\ud \ud Results: \ud Data revealed new information about the psychosocial and emotional losses experienced on a daily basis when living with motor neurone disease. The impact of the constancy of voluntary muscle degeneration and the uncertainty of the illness progression in terms of available time and functional loss, threatened people's understanding and expectations of life, their relationships, their personal identity and their future. Managing their relationship with the patient and their reactions to the devastation of motor neurone disease is consistent with the concept of emotional labour.\ud \ud Conclusions: \ud Family caregivers living with MND experience nonfinite losses and emotional labour on a daily basis. While each individual's experience of loss is unique, nurses need to include caregivers as well as patients, in their spectrum of supportive care, providing an independent confidant to share the emotional labour and working with them to develop interventions to assist them to manage their losses and their changing needs for psychological and emotional support

Dimensions of privacy in palliative care: views of health professionals

This paper explores the dimensions of privacy evident in the views of practice of health professionals in different inpatient palliative care settings. Eighty-eight semi-structured interviews were conducted with doctors, nurses and pastoral carers at 12 Australian regional and metropolitan locations. Transcribed interviews were coded and discursively content analysed. Privacy was one category that emerged in the transcript analysis. Results showed the necessity of attending to the physical, psycho-social and moral dimensions of privacy in the provision of palliative care that respects dignity, autonomy and supportive social relationships.Palliative care Privacy Psycho-social care Moral care Family care Australia

Caregiver bodywork: family member's experiences of caring for someone living with motor neurone disease (MND)

Aim. This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour.\ud Background. People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3–5 years from progressive loss of voluntary\ud muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family\ud caregivers’ experiences of the body have been neglected.\ud Method. An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face-to-face, semi-structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004.\ud Findings. Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body – how the disease affected the\ud patient and caregivers; the dependent body – the resulting care requirements; and the social body – how living with motor neurone disease affected their social support\ud networks. The visible body is a continual reminder of the ravages of the disease,while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving.\ud Conclusion. The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to facilitate supportive care

Constructions of sexuality and intimacy after cancer: Patient and health professional perspectives

With an increasing emphasis on the provision of psychosocial support for patients in cancer and palliative care, an emerging body of literature has highlighted the importance of providing the opportunity for patients to discuss issues of intimacy and sexuality with their health professionals. Very little is known about why health professionals struggle with this level of communication in clinical practice. The aim of this paper is to discuss constructions of intimacy and sexuality in cancer and palliative care from patient and health professional perspectives. A three stage reflexive inquiry was used to systematically and critically analyse data from semi-structured interviews (n=82), a textual analysis of 33 national and international clinical practice guidelines and participant feedback at 15 forums where preliminary research findings were presented to patients and health professionals in cancer and palliative care. The study was conducted across one public teaching hospital in Australia from 2002 to 2005. Data were further analysed drawing upon the work of Giddens on reflexivity, intimacy and sexuality, to reveal that the majority of health professionals embraced a less reflexive, more medicalised approach about patient issues of intimacy and sexuality after cancer. This was in stark contrast to the expectations of patients. Cancer had interrupted their sense of self, including how they experienced changes to intimate and sexual aspects of their lives, irrespective of their age, gender, culture, type of cancer or partnership status. Key findings from this project reveal incongruence between the way patients and health professionals constructed sexuality and intimacy. Structures which govern cancer and palliative care settings perpetrated the disparity and made it difficult for health professionals to regard patients as people with sexual and intimate needs or to express their own vulnerability when communicating about these issues in the clinical practice setting. A degree of reflexivity about personal and professional constructions of sexuality and intimacy was required for health professionals to confidently challenge these dominant forces and engage in the type of communication patients were seeking.Communication Reflexivity Australia Sexuality Intimacy Cancer Palliative care