Teaching family carers about home based palliative care: Final results from a group education program

Without the considerable support provided by family carers, many patients receiving palliative care would be unable to remain at home. However, family carers typically lack the required information and skills to prepare them for such a role. Pilot work has demonstrated that group education programs for family carers can be readily developed; they are feasible, accessible, and useful. This project sought to build on our pilot research to further examine the effectiveness of a group education program by evaluating the outcomes with a larger number of participants. The program aimed to prepare primary family carers for the role of supporting a relative with advanced, noncurative cancer at home. The psycho-educational program consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria, Australia. The following dependent variables were measured at three time points: carer competence, preparedness, rewards, and information needs. The three time points were: commencement of the program (Time 1), upon completion (Time 2), and two weeks later (Time 3). A total of 156 participants (including the pilot phase) completed Time 1 questionnaires and 96 completed all three time periods (62%). Between Time 1 and Time 2, the intervention had a statistically significant positive effect on preparedness, competence, rewards, and having informational needs met. Outcomes were maintained at Time 3. There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas.

This study demonstrated that a group education program to prepare family carers for the role of supporting a dying relative at home was effective. Implications for further research and practice are outlined.

Autopoiesis and the Home Confined Consumer: The Role of Personal Communities

Purpose – The purpose of this paper is to explore the consumption of a personal community and its role in the everyday life of the home-confined consumer. Design/methodology/approach – Using a Radical Constructivist approach, three cases of home confinement were explored in depth over a period of two years. Ongoing “conversations” captured the consumption experiences with personal communities. Findings – In relation to the home-confined context, the ability to attain individuality, empowerment and creativity are all heightened as a result of personal community construction. An underlying concern for home-confined consumers is their removal from independent living to institutionalized living, and, as a result the need to construct, manage and maintain a personal community is of major concern. Research limitations/implications – Although the study addresses a home-confined context, it is nevertheless reflective of concerns that are significant to all consumers, namely the attainment of individuality and independence irrespective of marginalization or not. Practical implications – The importance of a personal community in terms of both self-empowerment and self-identity with respect to marginalized groups and vulnerable individuals should not be underestimated. The supporting role of a personal community provides, in times of uncertainty, a framework to maintain self-identity and independence. Originality/value – This paper provides a better understanding of the role of a personal community in the consumption experiences of those consumers marginalized and vulnerable as a consequence of context. Home-confined consumers are “invisible” in the marketplace and the personal community is a means of redressing this imbalance by empowering such individuals.

Home Confined Consumers’ Freedom through Surrogate Activities: the Role of Personal Communities

This article explores the nature of surrogate consumption activity with three cases of non-institutionalised home confined consumers. The role played by personal communities in their daily lives is explored from the constrained rural contexts in which they consume. Despite the barriers to achieving normalcy in the marketplace, home confined consumers are able to realise freedom and agency, and express identity through engagement in surrogate consumption activity. Surrogate consumption activity also provides home confined consumers with opportunities to reinforce and challenge traditional family practices (discourses of care) through the ability for relationship culture development and social capital creation. Findings in this study show that home confined consumers, labeled as 'limited-choice' (Gabel, 2005) have the ability to display power, make choices, and find their voice despite non-interaction in the marketplace.

Home Confined Consumers: Identity Continuities and Discontinuities

Consumers confined to the home through disability or long term illness are unable to access the marketplace directly and consume through the socialization process. The consumption situation of home bound individuals is the concern of this study, specifically, issues of consumer (re) socialization and consumer identity post home confinement. The research focuses on possessions, with respect to meanings, role and the process of socialization in relation to identity. Findings indicate that the nostalgic consumption of possessions offers the ability to (re)construct the self- identity after confinement. Additionally, possessions afford opportunities to maintain continuity with former ableist identities after the discontinuity of enforced marketplace withdrawal. An individual case study illustrates this point.

Home-Based Monitoring and Assessment of Parkinson's Disease

As a clinically complex neurodegenerative disease, Parkinson's disease (PD) requires regular assessment and close monitoring. In our current study, we have developed a home-based tool designed to monitor and assess peripheral motor symptoms. An evaluation of the tool was carried out over a period of ten weeks on ten people with idiopathic PD. Participants were asked to use the tool twice daily over four days, once when their medication was working at its best (

Detection of aberrant behaviour in home environments from video sequence

We introduce an application for the detection of aberrant behaviour within home based environments, with a focus on repetitive actions, which may be present in instance of persons suffering from dementia. Video based analysis has been used to detect the motion of a person within a given scene in addition to tracking them over the time. Detection of repetitive actions has been based on the analysis of a person's trajectory using the principles of signal correlation. Along with the ability to detect repetitive motion the developed approach also has the ability to measure the amount of activity/inactivity within the scene during a given period of time. Our results showed that the developed approach had the ability to detect all patterns in the data set examined with an average accuracy of 96.67%. This work has therefore validated the proposed concept of video based analysis for the detection of repetitive activities.

A Cluster Randomized Controlled Trial of an Adapted U.S. Model of Pharmaceutical Care for Nursing Home Residents in Northern Ireland (Fleetwood Northern Ireland Study): A Cost-Effectiveness Analysis

OBJECTIVES: To evaluate the cost-effectiveness of an adapted U.S. model of pharmaceutical care to improve psychoactive prescribing for nursing home residents in Northern Ireland (Fleetwood NI Study).
DESIGN: Economic evaluation alongside a cluster randomized controlled trial.
SETTING: Nursing homes in NI randomized to intervention (receipt of the adapted model of care; n511) or control (usual care continued; n511).
PARTICIPANTS: Residents aged 65 and older who provided informed consent (N5253; 128 intervention, 125 control) and who had full resource use data at 12 months.
INTERVENTION: Trained pharmacists reviewed intervention home residents’ clinical and prescribing information for 12 months, applied an algorithm that guided them in assessing the appropriateness of psychoactive medication, and worked with prescribers (general practitioners) to make changes. The control homes received usual care in which there was no pharmacist intervention.
MEASUREMENTS: The proportion of residents prescribed one or more inappropriate psychoactive medications (according to standardized protocols), costs, and a cost-effectiveness acceptability curve. The latter two outcomes are the focus for this article.
RESULTS: The proportions of residents receiving inappropriate psychoactive medication at 12 months in the intervention and control group were 19.5% and 50.4%, respectively. The mean cost of healthcare resources used per resident per year was $4,923 (95% con?dence interval.