174 research outputs found

    Facilitating social coping-‘seeking emotional and practical support from others’-as a critical strategy in maintaining the family care of people with dementia

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    The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established ‘coping’ as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In-depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed ‘social coping’ (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term

    Parasuicide in People With Alcohol Dependence: Relationship to Interpersonal Problem Solving

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    Objective: To measure patients' and carers' satisfaction with physical and psychological care provided by stroke services in hospital and post-discharge. To compare satisfaction with certain components of care and between patients and carers. Design: Postal Questionnaire Survey. Setting: Stroke Rehabilitation Unit, Law Hospital, Lanarkshire Subjects: All patients discharged from the Stroke Rehabilitation Unit within a four- month period, and identified carers. The response rates were 67% (n=28) for patients and 42% (n=l 8) for carers. Results: High levels of satisfaction were found overall and for each of the components of care. Satisfaction was higher than previously found on general hospital wards. There were no differences in satisfaction between components of care or between patients and carers. Areas of particular satisfaction were personal care and information in hospital, and post-discharge medical care. Areas of least satisfaction were post-discharge personal care, emotional support and information. Conclusions: Stroke patients and carers were highly satisfied with physical and psychological care provided in hospital and post-discharge. Specialized stroke rehabilitation units may produce greater satisfaction than stroke services in general wards. The areas of least satisfaction are within post-discharge care, and warrant further attention in service planning

    ‘Back to our Roots?’ Re-visiting psychoanalytically-informed baby and young child observation in the education of student social workers

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    While there is a well-established literature on psychoanalytically-informed baby and young child observation in social work education, little has been published recently. This paper reviews the rationale for its use, evaluating its impact on students’ learning in the light of contemporary policy and practice contexts facing social work education. Analysis of feedback gained from a recent cohort, identifies three ways in which learning through baby and young child observation contributes: firstly, students encounter and learn about the complexity of child development from the direct experience of observing and secondly, observing facilitates the development of important skills for practice; students’ ‘use of self’. Thirdly, through observing, students describe how they develop the capacity to take-up and sustain a professional role. Well-structured teaching and learning through observation is therefore shown to provide a rigorous, theoretically- grounded contribution to the training of university-based social work students entering this complex and challenging professional field

    Beyond the growth rate of cosmic structure: testing modified gravity models with an extra degree of freedom

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    In 'modified' gravity the observed acceleration of the universe is explained by changing the gravitational force law or the number of degrees of freedom in the gravitational sector. Both possibilities can be tested by measurements of cosmological structure formation. In this paper we elaborate the details of such tests using the Galileon model as a case study. We pay attention to the possibility that each new degree of freedom may have stochastically independent initial conditions, generating different types of potential well in the early universe and breaking complete correlation between density and velocity power spectra. This 'stochastic bias' can confuse schemes to parametrize the predictions of modified gravity models, such as the use of the growth parameter f alone. Using data from the WiggleZ Dark Energy Survey we show that it will be possible to obtain constraints using information about the cosmological-scale force law embedded in the multipole power spectra of redshift-space distortions. As an example, we obtain an upper limit on the strength of the conformal coupling to matter in the cubic Galileon model, giving |1/M| < 200/M_P. This allows the fifth-force to be stronger than gravity, but is consistent with zero coupling

    Web-Based Self-Compassion Training to Improve the Well-Being of Youth With Chronic Medical Conditions: Randomized Controlled Trial

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    Background:Up to one-third of young people live with chronic physical conditions (eg, diabetes, asthma, and autoimmune disease) that frequently involve recurrent pain, fatigue, activity limitations, stigma, and isolation. These issues may be exacerbated as young people transition through adolescence. Accordingly, young people with chronic illness are at a high risk of psychological distress. Accessible, evidence-based interventions for young people with chronic illnesses are urgently needed to improve well-being, support adaptation, and enhance daily functioning. Self-compassion, which is an adaptive means of relating to oneself during times of difficulty, is a promising intervention target for this population.Objective:This study aims to test the efficacy of a 4-week, self-guided, web-based self-compassion training program for improving well-being among young Australians (aged 16-25 years) living with a chronic medical condition. The primary outcomes were self-compassion, emotion regulation difficulties, and coping; the secondary outcomes were well-being, distress, and quality of life. We also sought to test whether changes in primary outcomes mediated changes in secondary outcomes and gather feedback about the strengths and limitations of the program.Methods:We conducted a single-blind, parallel-group, randomized controlled trial comparing a 4-week, fully automated, web-based self-compassion training program with a waitlist control. Participants were recruited via the internet, and outcomes were self-assessed at 4 (T1) and 12 weeks (T2) after the baseline time point via a web-based survey. A mixed methods approach was used to evaluate the program feedback.Results:Overall, 151 patients (age: mean 21.15, SD 2.77 years; female patients: n=132, 87.4%) were randomized to the intervention (n=76, 50.3%) and control (n=75, 49.7%) groups. The loss–to–follow-up rate was 47.4%, and program use statistics indicated that only 29% (22/76) of young people in the experimental group completed 100% of the program. The main reported barrier to completion was a lack of time. As anticipated, treatment effects were observed for self-compassion (P=.01; partial η2=0.05; small effect); well-being (P≤.001; partial η2=0.07; medium effect); and distress (P=.003; partial η2=0.054; small-medium effect) at the posttest time point and maintained at follow-up. Contrary to our hypotheses, no intervention effects were observed for emotion regulation difficulties or maladaptive coping strategies. Improvements in adaptive coping were observed at the posttest time point but were not maintained at follow-up. Self-compassion, but not emotion regulation difficulties or coping, mediated the improvements in well-being.Conclusions:Minimal-contact, web-based self-compassion training can confer mental health benefits on young people with chronic conditions. This group experiences substantial challenges to participation in mental health supports, and program engagement and retention in this trial were suboptimal. Future work should focus on refining the program content, engagement, and delivery to optimize engagement and treatment outcomes for the target group

    Alzheimer's Disease: The Resilience Approach to making the Family Care of People Living with Alzheimer's sustainable

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    With critical reliance on primary family carers of people living with Alzheimer’s disease (PWA) at an all-time high and set to increase markedly over the next few decades an urgent question concerns how this growing army of family carers will be supported in the future? The uniqueness and complexity of Alzheimer’s disease (AD) compared with other diseases and the myriad challenges it presents for family carers make such carers particularly vulnerable to the debilitating effects of chronic stress and its sequelae. The biopsychosocial pathways responsible for carer health deficits resulting from chronic exposure to the care environment are discussed. Further, a new epidemiological framework is introduced that attempts to capture how the dynamics at work within the AD care environment might lead it to become epidemiological in the sense that chronic exposure to it can uniquely generate carer disease outcomes. If the family care of PWA can potentially create an environment and dynamics within this that may be injurious to carers themselves, leading to premature cessation of informal care, a central issue for policy-makers and service providers concerns ‘who will care for the carers and how?’ Although the present article primarily focuses on family carers of PWA, the knowledge that carers’ health has a relatively direct impact on the capacity to carry out caregiving, as well as influencing the levels of harmony or disequilibrium that exists within the care environment, crucially means that carers’ health also impacts on the wellbeing of PWA as part of a closely knit reciprocal relationship-they are mutually bound. Further, while there is evidence to indicate that some family carers of PWA appear able to overcome the many challenges and potential attrition long-term care of a PWA can inflict on their own health, a further key question concerns how such carers manage despite adversity? What characteristics, assets and resources do these carers possess that perhaps sets them apart? Are there valuable lessons we can learn concerning how the family care of PWA might be made optimal while safeguarding family carers’ own health? This represents an important question since the vast majority of family carers, and moreover their care recipients, hope and desire to spend their final years, months, days together as a family rather than see their family member consigned to a formal institution. This article therefore argues the case for urgent public health action against the backdrop of the rising tide of AD globally. Presently, there is a lack of any clear consensus concerning how more productive care environments might be created that better safeguard both family carers’ health and by association PWA’s health. Moreover, there is a need to move beyond syntheses of findings from the available literature that are limited to descriptive accounts based on ‘outcomes’ and towards a deeper analysis of ‘process,’ i.e. by focusing on what intrinsically ‘works’ to support family carers of PWA and how these processes might be generated. In response, the present authors recently conducted a comprehensive Realist review of the current literature. How this review was conducted is briefly described, as are the broad findings that lead to the proposal of a new model of family care of PWA. The strengths and weaknesses of existing hypotheses are discussed for how carers can counteract the challenges to their own health that care of PWA can bring and a new hypothesis is proposed based on a Resilience approach to family care of PWA that links with humans’ ‘fight or flight’ response to stressors

    Dissociable contributions of the human amygdala and orbitofrontal cortex to incentive motivation and goal selection

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    Theories of incentive motivation attempt to capture the way in which objects and events in the world can acquire high motivational value and drive behavior, even in the absence of a clear biological need. In addition, for an individual to select the most appropriate goal, the incentive values of competing desirable objects need to be defined and compared. The present study examined the neural substrates by which appetitive incentive value influences prospective goal selection, using positron emission tomographic neuroimaging in humans. Sated subjects were shown a series of restaurant menus that varied in incentive value, specifically tailored for each individual, and in half the trials, were asked to make a selection from the menu. The amygdala was activated by high-incentive menus regardless of whether a choice was required. Indeed, activity in this region varied as a function of individual subjective ratings of incentive value. In contrast, distinct regions of the orbitofrontal cortex were recruited both during incentive judgments and goal selection. Activity in the medial orbital cortex showed a greater response to high-incentive menus and when making a choice, with the latter activity also correlating with subjective ratings of difficulty. Lateral orbitofrontal activity was observed selectively when participants had to suppress responses to alternative desirable items to select their most preferred. Taken together, these data highlight the differential contribution of the amygdala and regions within the orbitofrontal cortex in a neural system underlying the selection of goals based on the prospective incentive value of stimuli, over and above homeostatic influences

    Carer administration of as-needed sub-cutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

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    Background Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person’s home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. Objectives To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. Design We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. Setting Home-based care without 24/7 paid care provision, in three UK sites. Participants Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. Intervention Intervention-group carers received training by local nurses using a manualised training package. Main outcome measures Quantitative data were collected at baseline and 6–8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Results In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. Conclusion The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial. Trial registration Current Controlled Trials ISRCTN11211024. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information

    Appetitive traits and food intake patterns in early life

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    BACKGROUND: High food responsiveness (FR) and low satiety responsiveness (SR) are 2 appetitive traits that have been associated longitudinally with risk of excessive weight gain; however, to our knowledge, no studies have examined the associations between these traits and eating patterns in daily life in young children. OBJECTIVE: We tested the hypothesis that higher FR is independently associated with a higher meal frequency and that lower SR is associated with a larger meal size. DESIGN: Data were from 1102 families (2203 children) from the Gemini twin birth cohort. Appetite was assessed with the use of the Child Eating Behavior Questionnaire when the children were 16 mo old (mean ± SD: 15.73 ± 1.08 mo old), and meal frequency (eating occasions per day) and meal size (kilojoules per eating occasion) were determined from 3-d diet diaries completed by parents when the children were 21 mo old (mean ± SD: 20.65 ± 1.10 mo old). Complex samples general linear models were used to explore cross-sectional associations between appetitive traits and meal variables. RESULTS: After adjustment for the covariates gestational age, birth weight, sex, difference in age at diet-diary completion, and appetite measurement, higher FR was associated with more-frequent meals (B ± SE: 0.13 ± 0.04; P = 0.001) but not with meal size (P = 0.41), and lower SR was associated with a larger meal size (B ± SE: -47.61 ± 8.79; P < 0.001) but not with meal frequency (P = 0.15). CONCLUSIONS: FR and SR predict different eating variables with more food-responsive children eating more frequently, whereas less-satiety-responsive children eat more food on each eating occasion. Different strategies may be required to reduce the potential effects of FR and SR on weight gain

    Rucaparib maintenance treatment for recurrent ovarian carcinoma after response to platinum therapy (ARIEL3): a randomised, double-blind, placebo-controlled, phase 3 trial

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    Background: Rucaparib, a poly(ADP-ribose) polymerase inhibitor, has anticancer activity in recurrent ovarian carcinoma harbouring a BRCA mutation or high percentage of genome-wide loss of heterozygosity. In this trial we assessed rucaparib versus placebo after response to second-line or later platinum-based chemotherapy in patients with high-grade, recurrent, platinum-sensitive ovarian carcinoma. Methods: In this randomised, double-blind, placebo-controlled, phase 3 trial, we recruited patients from 87 hospitals and cancer centres across 11 countries. Eligible patients were aged 18 years or older, had a platinum-sensitive, high-grade serous or endometrioid ovarian, primary peritoneal, or fallopian tube carcinoma, had received at least two previous platinum-based chemotherapy regimens, had achieved complete or partial response to their last platinum-based regimen, had a cancer antigen 125 concentration of less than the upper limit of normal, had a performance status of 0–1, and had adequate organ function. Patients were ineligible if they had symptomatic or untreated central nervous system metastases, had received anticancer therapy 14 days or fewer before starting the study, or had received previous treatment with a poly(ADP-ribose) polymerase inhibitor. We randomly allocated patients 2:1 to receive oral rucaparib 600 mg twice daily or placebo in 28 day cycles using a computer-generated sequence (block size of six, stratified by homologous recombination repair gene mutation status, progression-free interval after the penultimate platinum-based regimen, and best response to the most recent platinum-based regimen). Patients, investigators, site staff, assessors, and the funder were masked to assignments. The primary outcome was investigator-assessed progression-free survival evaluated with use of an ordered step-down procedure for three nested cohorts: patients with BRCA mutations (carcinoma associated with deleterious germline or somatic BRCA mutations), patients with homologous recombination deficiencies (BRCA mutant or BRCA wild-type and high loss of heterozygosity), and the intention-to-treat population, assessed at screening and every 12 weeks thereafter. This trial is registered with ClinicalTrials.gov, number NCT01968213; enrolment is complete. Findings: Between April 7, 2014, and July 19, 2016, we randomly allocated 564 patients: 375 (66%) to rucaparib and 189 (34%) to placebo. Median progression-free survival in patients with a BRCA-mutant carcinoma was 16·6 months (95% CI 13·4–22·9; 130 [35%] patients) in the rucaparib group versus 5·4 months (3·4–6·7; 66 [35%] patients) in the placebo group (hazard ratio 0·23 [95% CI 0·16–0·34]; p&lt;0·0001). In patients with a homologous recombination deficient carcinoma (236 [63%] vs 118 [62%]), it was 13·6 months (10·9–16·2) versus 5·4 months (5·1–5·6; 0·32 [0·24–0·42]; p&lt;0·0001). In the intention-to-treat population, it was 10·8 months (8·3–11·4) versus 5·4 months (5·3–5·5; 0·36 [0·30–0·45]; p&lt;0·0001). Treatment-emergent adverse events of grade 3 or higher in the safety population (372 [99%] patients in the rucaparib group vs 189 [100%] in the placebo group) were reported in 209 (56%) patients in the rucaparib group versus 28 (15%) in the placebo group, the most common of which were anaemia or decreased haemoglobin concentration (70 [19%] vs one [1%]) and increased alanine or aspartate aminotransferase concentration (39 [10%] vs none). Interpretation: Across all primary analysis groups, rucaparib significantly improved progression-free survival in patients with platinum-sensitive ovarian cancer who had achieved a response to platinum-based chemotherapy. ARIEL3 provides further evidence that use of a poly(ADP-ribose) polymerase inhibitor in the maintenance treatment setting versus placebo could be considered a new standard of care for women with platinum-sensitive ovarian cancer following a complete or partial response to second-line or later platinum-based chemotherapy. Funding: Clovis Oncology
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