Family caregiver views on patient-centred care at the end of life

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member. Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses. Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M=4.3 (SD=1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex. Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.

The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and c. ulturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

Evaluation of quality of life and priorities of patients with glaucoma

PURPOSE: To investigate the quality of life and priorities of patients with glaucoma.

METHODS: Patients diagnosed with glaucoma and no other ocular comorbidity were consecutively recruited. Clinical information was collected. Participants were asked to complete three questionnaires: EuroQuol (EQ-5D), time tradeoff (TTO), and choice-based conjoint analysis. The latter used five-attribute outcomes: (1) reading and seeing detail, (2) peripheral vision, (3) darkness and glare, (4) household chores, and (5) outdoor mobility. Visual field loss was estimated by using binocular integrated visual fields (IVFs).

RESULTS: Of 84 patients invited to participate, 72 were enrolled in the study. The conjoint utilities showed that the two main priorities were "reading and seeing detail" and "outdoor mobility." This rank order was stable across all segmentations of the data by demographic or visual state. However, the relative emphasis of these priorities changed with increasing visual field loss, with concerns for central vision increasing, whereas those for outdoor mobility decreased. Two subgroups of patients with differing priorities on the two main attributes were identified. Only 17% of patients (those with poorer visual acuity) were prepared to consider TTO. A principal component analysis revealed relatively independent components (i.e., low correlations) between the three different methodologies for assessing quality of life.

CONCLUSIONS: Assessments of quality of life using different methodologies have been shown to produce different outcomes with low intercorrelations between them. Only a minority of patients were prepared to trade time for a return to normal vision. Conjoint analysis showed two subgroups with different priorities. Severity of glaucoma influenced the relative importance of priorities.

Reconsidering Resource Rights: The Case for a Basic Right to the Benefits of Life-Sustaining Ecosystem Services

In the presence of anthropogenic climate change, gross environmental degradation, and mass abject poverty, many political theorists currently debate issues such as people's right to water, the right to food, and the distribution of rights to natural resources more generally. However, thus far many theorists either focus (somewhat arbitrarily) only on one particular resource (e.g. water) or they treat all natural resources alike, meaning that many relevant distinctions within the group of natural resources are overlooked. Hence, the paper will start with an analysis of the various forms which natural resources can take and how this might influence one's conception of resource rights. In so doing, the paper argues that we have to carefully distinguish between the actual physical resources people might control and how we distribute these, and the life-sustaining benefits each and every person draws from sustainable and functioning ecosystems. Based on this distinction, the paper will argue for a right to the benefits of life-sustaining ecosystem services as a universal basic right every person has. Further distributive claims with respect to particular physical resources would thus be limited by the requirements of such a basic right.

Experimental Evaluations of Elementary Science Programs: A Best-Evidence Synthesis

This article presents a systematic review of research on the achievement outcomes of all types of approaches to teaching science in elementary schools. Study inclusion criteria included use of randomized or matched control groups, a study duration of at least 4 weeks, and use of achievement measures independent of the experimental treatment. A total of 23 studies met these criteria. Among studies evaluating inquiry-based teaching approaches, programs that used science kits did not show positive outcomes on science achievement measures (weighted ES=+0.02 in 7 studies), but inquiry-based programs that emphasized professional development but not kits did show positive outcomes (weighted ES=+0.36 in 10 studies). Technological approaches integrating video and computer resources with teaching and cooperative learning showed positive outcomes in a few small, matched studies (ES=+0.42 in 6 studies). The review concludes that science teaching methods focused on enhancing teachers’ classroom instruction throughout the year, such as cooperative learning and science-reading integration, as well as approaches that give teachers technology tools to enhance instruction, have significant potential to improve science learning.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

Aims and objectives: To draw out the similar complexities faced by staff around
truth-telling in a children’s and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.

Background: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.

Design: Secondary analysis of data using a supra-analysis design to identify commonality of experiences.

Methods: Secondary ‘supra-analysis’ was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children’s and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.

Results: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.

Conclusions: Both children’s and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.

Relevance to clinical practice: There remains a powerful death-denying culture in
many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

Tephrochronology and the extended intimate (integration of ice‐core, marine and terrestrial records) event stratigraphy 8-128kab2k

The comparison of palaeoclimate records on their own independent timescales is central to the work of the INTIMATE (INTegrating Ice core, MArine and TErrestrial records) network. For the North Atlantic region, an event stratigraphy has been established from the high-precision Greenland ice-core records and the integrated GICC05 chronology. This stratotype provides a palaeoclimate signal to which the timing and nature of palaeoenvironmental change recorded in marine and terrestrial archives can be compared. To facilitate this wider comparison, without assuming synchroneity of climatic change/proxy response, INTIMATE has also focussed on the development of tools to achieve this. In particular the use of time-parallel marker horizons e.g. tephra layers (volcanic ash). Coupled with the recent temporal extension of the Greenland stratotype, as part of this special issue, we present an updated INTIMATE event stratigraphy highlighting key tephra horizons used for correlation across Europe and the North Atlantic. We discuss the advantages of such an approach, and the key challenges for the further integration of terrestrial palaeoenvironmental records with those from ice cores and the marine realm.

Boost your word power: Katherine Rogers and Maggie Bennett describe a tool that can help students prepare their life science assignments

Anatomy and physiology refers to the structure and function of the human body. Students studying this module, known as life science or bioscience, develop knowledge of the structure (anatomy) and function (physiology) of the body that can be applied in clinical practice and support other study courses.

Quality of life and near vision impairment due to functional presbyopia among rural Chinese adults.

PURPOSE: To evaluate the impact of near-vision impairment on visual functioning and quality of life in a rural adult population in Shenyang, northern China. METHODS: A population-based, cross-sectional study was conducted among persons aged 40+ years, during which functional presbyopia (correctable presenting near vision < 20/50 [N8] at 40 cm) was assessed. Near-vision-related quality of life and spectacle usage questionnaires were administered by trained interviewers to determine the degree of self-rated difficulty with near tasks. RESULTS: A total of 1008 respondents (91.5% of 1102 eligible persons) were examined, and 776 (78%) of completed the questionnaires (mean age, 57.0 ± 10.2 years; 63.3% women). Near-vision spectacle wearers obtained their spectacles primarily from markets (74.5%) and optical shops (21.7%), and only 1.14% from eye clinics. Among 538 (69.3%) persons with functional presbyopia, self-rated overall (distance and near) vision was worse (P < 0.001) and difficulty with activities of daily living greater (P < 0.001) than among nonpresbyopes. Odds of reporting any difficulty with daily tasks remained higher (OR = 2.32; P < 0.001) for presbyopes after adjustment for age, sex, education and distance vision. Compared to persons without presbyopia, presbyopic persons were more likely to report diminished accomplishment due to vision (P = 0.01, adjusted for age, sex, education, and distance vision.) CONCLUSIONS: Difficulties with activities of daily living and resulting social impediments are common due to presbyopia in this setting. Most spectacle wearers with presbyopia in rural China obtain near correction from sources that do not provide comprehensive vision care.

Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

Eliciting Security Requirements and Tracing them to Design: An Integration of Common Criteria, Heuristics, and UMLsec

Building secure systems is difficult for many reasons. This paper deals with two of the main challenges: (i) the lack of security expertise in development teams, and (ii) the inadequacy of existing methodologies to support developers who are not security experts. The security standard ISO 14508 (Common Criteria) together with secure design techniques such as UMLsec can provide the security expertise, knowledge, and guidelines that are needed. However, security expertise and guidelines are not stated explicitly in the Common Criteria. They are rather phrased in security domain terminology and difficult to understand for developers. This means that some general security and secure design expertise are required to fully take advantage of the Common Criteria and UMLsec. In addition, there is the problem of tracing security requirements and objectives into solution design,which is needed for proof of requirements fulfilment. This paper describes a security requirements engineering methodology called SecReq. SecReq combines three techniques: the Common Criteria, the heuristic requirements editorHeRA, andUMLsec. SecReqmakes systematic use of the security engineering knowledge contained in the Common Criteria and UMLsec, as well as security-related heuristics in the HeRA tool. The integrated SecReq method supports early detection of security-related issues (HeRA), their systematic refinement guided by the Common Criteria, and the ability to trace security requirements into UML design models. A feedback loop helps reusing experiencewithin SecReq and turns the approach into an iterative process for the secure system life-cycle, also in the presence of system evolution.

Curriculum and beyond: Mathematics support for first year life science students

The move into higher education is a real challenge for students from all educational backgrounds, with the adaptation to a new curriculum and style of learning and teaching posing a daunting task. A series of exercises were planned to boost the impact of the mathematics support for level four students and was focussed around a core module for all students. The intention was to develop greater confidence in tackling mathematical problems in all levels of ability and to provide more structured transition period in the first semester of level 4. Over a two-year period the teaching team for Biochemistry and Molecular Biology provided a series of structured formative tutorials and “interactive” online problems. Video solutions to all formative problems were made available, in order that students were able to engage with the problems at any time and were not disadvantaged if they could not attend. The formative problems were specifically set to dovetail into a practical report in which the mathematical skills developed were specifically assessed. Students overwhelmingly agreed that the structured formative activities had broadened their understanding of the subject and that more such activities would help. Furthermore, it is interesting to note that the package of changes undertaken resulted in a significant increase in the overall module mark over the two years of development.

Impact of a price-maker pumped storage hydro unit on the integration of wind energy in power systems

The increasing integration of larger amounts of wind energy into power systems raises important operational issues, such as the balance between power generation and demand. The pumped storage hydro (PSH) units are one possible solution to mitigate this problem, once they can store the excess of energy in the periods of higher generation and lower demand. However, the behaviour of a PSH unit may differ considerably from the expected in terms of wind power integration when it operates in a liberalized electricity market under a price-maker context. In this regard, this paper models and computes the optimal PSH weekly scheduling in a price-taker and price-maker scenarios, either when the PSH unit operates in standalone and integrated in a portfolio of other generation assets. Results show that the price-maker standalone PSH will integrate less wind power in comparison with the price-taker situation. Moreover, when the PSH unit is integrated in a portfolio with a base load power plant, the role of the price elasticity of demand may completely change the operational profile of the PSH unit. (C) 2014 Elsevier Ltd. All rights reserved.