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The Comprehensive Assessment of Neurodegeneration and Dementia (COMPASS-ND) cohort study of the Canadian Consortium on Neurodegeneration in Aging (CCNA) is a national initiative to catalyze research on dementia, set up to support the research agendas of CCNA teams. This cross-country longitudinal cohort of 2310 deeply phenotyped subjects with various forms of dementia and mild memory loss or concerns, along with cognitively intact elderly subjects, will test hypotheses generated by these teams.
The COMPASS-ND protocol, initial grant proposal for funding, fifth semi-annual CCNA Progress Report submitted to the Canadian Institutes of Health Research December 2017, and other documents supplemented by modifications made and lessons learned after implementation were used by the authors to create the description of the study provided here.
The CCNA COMPASS-ND cohort includes participants from across Canada with various cognitive conditions associated with or at risk of neurodegenerative diseases. They will undergo a wide range of experimental, clinical, imaging, and genetic investigation to specifically address the causes, diagnosis, treatment, and prevention of these conditions in the aging population. Data derived from clinical and cognitive assessments, biospecimens, brain imaging, genetics, and brain donations will be used to test hypotheses generated by CCNA research teams and other Canadian researchers. The study is the most comprehensive and ambitious Canadian study of dementia. Initial data posting occurred in 2018, with the full cohort to be accrued by 2020.
Availability of data from the COMPASS-ND study will provide a major stimulus for dementia research in Canada in the coming years.
The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.
The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.
Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.
Significance of results
Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.
More than half of all cancer patients experience unrelieved pain. Culture can significantly affect patients’ cancer pain-related beliefs and behaviors. Little is known about cultural impact on Chinese cancer patients’ pain management. The objective of this review was to describe pain management experiences of cancer patients from Chinese backgrounds and to identify barriers affecting their pain management.
A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies were included if they reported pain management experiences of adult cancer patients from Chinese backgrounds. Five databases were searched for peer-reviewed articles published in English or Chinese journals between1990 and 2015. The quality of included studies was assessed using Joanna Briggs Institution's appraisal tools.
Of 3,904 identified records, 23 articles met criteria and provided primary data from 6,110 patients. Suboptimal analgesic use, delays in receiving treatment, reluctance to report pain, and/or poor adherence to prescribed analgesics contributed to the patients’ inadequate pain control. Patient-related barriers included fatalism, desire to be good, low pain control belief, pain endurance beliefs, and negative effect beliefs. Patients and family shared barriers about fear of addiction and concerns on analgesic side effects and disease progression. Health professional–related barriers were poor communication, ineffective management of pain, and analgesic side effects. Healthcare system–related barriers included limited access to analgesics and/or after hour pain services and lack of health insurance.
Significance of results
Chinese cancer patients’ misconceptions regarding pain and analgesics may present as the main barriers to optimal pain relief. Findings of this review may inform health interventions to improve cancer pain management outcomes for patients from Chinese backgrounds. Future studies on patients’ nonpharmacology intervention-related experiences are required to inform multidisciplinary and biopsychosocial approaches for culturally appropriate pain management.
The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.
A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.
Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.
Significance of results:
Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.
Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation.
Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach.
Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback.
The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.
Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer.
An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: “sleep,” “insomnia,” “sleep disturbance,” “circadian rhythm,” “caregiver,” “carer,” “advanced cancer,” “palliative cancer,” and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded.
Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours.
Significance of Results:
Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.
The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.
Measuring the effect of the Needlestick Safety and Prevention Act (NSPA) is challenging. No agreement exists on a common denominator for calculating injury rates. Does it make a difference? How are the law and safety-engineered devices related? What is the effect on injuries and costs? This study examines those issues in assessing the impact of the legislation on hospital worker percutaneous injuries.
Using a historic prospective design, we analyzed injury data from 85 hospitals. Injury rates were calculated per 100 full-time equivalents, 100 staffed beds, and 100 admissions each year from 1995 to 2005. We compared changes for each denominator. We measured the proportion of the injury rate attributed to safety-engineered devices. Finally, we estimated a national change in injuries and associated costs.
For all denominators, a precipitous drop in injury rates of greater than one-third (P<.001) occurred in 2001, immediately following the legislation. The decrease was sustained through 2005. Concomitant with the decrease in rates, the proportion of injuries from safety-engineered devices nearly tripled (P <.001) across all denominators. We estimated annual reductions of more than 100,000 sharps injuries at a cost savings of $69-$415 million.
While the data cannot demonstrate cause and effect, the evidence suggests a reduction in hospital worker injury rates related to the NSPA, regardless of denominator. It also suggests an association between the increase in safety-engineered devices and the reduction in overall injury rates. The decreases observed translate into significant reductions in injuries and associated costs.
Background: Although the experience of stress and associated coping responses are thought to play a role in the onset of schizophrenia and other psychotic disorders, there is little empirical evidence to support such a relationship. The relatively recent development of validated and reliable criteria for identifying young people at “ultra” high-risk (UHR) of psychosis has enabled the process of illness onset to be studied more closely than was previously possible. Method: This longitudinal study compared the experiences of stress and coping between a UHR cohort (N = 143) and a healthy comparison group (HC group, N = 32). Results: The UHR group experienced significantly fewer life events over a 12-month period than the HC group, but there was no difference in the experience of minor events or “hassles”. However, the UHR group reported feeling significantly more distressed by events, felt they coped more poorly and utilized different coping strategies. Conclusions: The appraisals made about stressors differentiated the groups and was associated with differences in coping and distress levels. This suggests that treatment strategies focusing on stress management and enhancing coping skills might be important components of preventive interventions.
There are many reasons to capture study animals. They include marking or radio-collaring (Chapter 10), taking morphological measurements (Chapter 9), or biological samples (Chapters 1 and 8), and estimating age and condition. For small nocturnal primates, capture is essential to radio-tag animals for direct observation, the most effective method of determining the spatial distribution and social interactions of individuals and estimating population densities (Chapter 6; Sterling et al., 2000). Historically, studies in which wild, larger-bodied, primates are habituated for long-term observation have rarely included capture, perhaps because researchers have been understandably wary of its effects on subsequent behaviour and habituation (Chapters 2 and 11). However, a survey of more than 120 studies that combined observation with capture, and which involved about 65 primate species, showed that a careful capture–release programme using trapping will not cause a previously habituated population to change its behaviour towards human observers, and will not be associated with excess mortality or serious injury (Jolly & Phillips-Conroy, 1993 and unpublished data). Changes in ranging habits will be temporary at worst, and basic social organization and structure will not be affected. The survey also provided a comparison between capture methods. Trapping has been used most often to catch diurnal-terrestrial and nocturnal-arboreal species. Diurnal-arboreal primates (apart from callitrichines) have generally been captured by darting (Chapter 8), a bias that seems unjustified.
The recent drive within the UK National Health Service to improve psychosocial care for people with mental illness is both understandable and welcome: evidence-based psychological and social interventions are extremely important in managing psychiatric illness. Nevertheless, the accompanying downgrading of medical aspects of care has resulted in services that often are better suited to offering non-specific psychosocial support, rather than thorough, broad-based diagnostic assessment leading to specific treatments to optimise well-being and functioning. In part, these changes have been politically driven, but they could not have occurred without the collusion, or at least the acquiescence, of psychiatrists. This creeping devaluation of medicine disadvantages patients and is very damaging to both the standing and the understanding of psychiatry in the minds of the public, fellow professionals and the medical students who will be responsible for the specialty's future. On the 200th birthday of psychiatry, it is fitting to reconsider the specialty's core values and renew efforts to use psychiatric skills for the maximum benefit of patients
Nursing homes in the United States have for over 40-years been riddled with evidence of poor performance. To combat problems in this industry, state and federal governments developed an elaborate monitoring and regulatory structure. At the same time, an important citizens' movement involving nursing-home consumer advocacy groups (CAGs) came to life. This paper presents the results of a postal survey of 47 active nursing-home consumer advocacy groups. They indicate that the majority of these organisations were started by an individual dissatisfied with the care provided to a family member. The political arena in which these organisations were most active was State legislatures. Though they varied considerably, the average CAG operated on a thin financial margin, largely supported by member contributions and donations. These organisations defined their success in terms of their ability to generate policy changes at the State level. Unfortunately, as they pursued these changes, they often failed to develop the organisational infrastructure necessary to assure the CAGs' continued operation. When CAGs ceased operations, it was in most cases the loss of the organisation's original leader or the cumulative effects of the constant struggle to maintain adequate financial resources.