Public involvement in palliative care research: a qualitative evidence synthesis and case study approach

Introduction Although public involvement has grown in prominence, there is a lack of evidence on involvement in palliative care research compared to elsewhere in health and social care. Considering the ageing population, the need for palliative care service provision and research will grow, increasing the significance of involvement in this area. This study aimed to explore involvement in palliative care research by identifying facilitators and barriers for involvement, and gaps in the evidence base. Furthermore, to explore the effectiveness of involvement in palliative care research and how prominent issues have been addressed. Methods A multi-methods design was used. A qualitative evidence synthesis was undertaken. Subsequently, a case study approach focussed on two palliative care research centres, as exemplars of involvement. Qualitative methods were used, including documentary analysis and interviews with public members and staff. Reflexivity and an emphasis on involvement throughout the study, by working with a Patient and Carer Reference Group, improved both the quality and comprehensiveness. Findings Although some believe involvement in this field to be complex and challenging, many similarities to involvement elsewhere were found. These include values and principles, diversity and inclusion, and the need for adequate resources, particularly for organisational level involvement. Other factors highlighted differences in involvement, largely due to palliative care bringing emotive and sensitive issues, resulting in increased staff, time and funding all being required. Power was also significant, notably the exclusion of public members with experience of palliative care cannot be justified because of their perceived vulnerability. Discussion This study has identified factors common to all areas of involvement, including a need to develop and resource infrastructure to support both research studies and organisational level involvement, and the development of a positive culture. Factors specific to palliative care research include the need for additional resources for involvement to be undertaken effectively

Occupational therapy for people with psychotic conditions in community settings: a pilot randomized controlled trial

OBJECTIVES: To investigate the effectiveness of a long established intervention, occupational therapy for people with psychotic conditions, and to inform future research designs. DESIGN: A pilot randomized controlled trial. SETTING: Two community mental health teams in a UK city. PARTICIPANTS: Forty-four adults with schizophrenia or other psychotic conditions, and functional problems. INTERVENTIONS: Twelve months of individualized occupational therapy in community settings, as an adjunct to usual care and compared to treatment as usual. A two to one randomization ratio was used in favour of occupational therapy. OUTCOME MEASURES: Social Functioning Scale, Scale for the Assessment of Negative Symptoms and employment. RESULTS: Both groups' scores on Social Functioning Scale and Scale for the Assessment of Negative Symptoms showed significant improvement over 12 months. The Social Functioning Scale overall mean difference for occupational therapy was 2.33, P=0.020 and for treatment as usual was 6.17, P=0.023. The Scale for the Assessment of Negative Symptoms total mean difference for occupational therapy was -16.25, P<0.001 and for treatment as usual was -17.36, P= 0.011. There were no differences between the two groups on any of the outcome measures. After 12 months the occupational therapy group showed clinically significant improvements that were not apparent in the control group. These were in four subscales of the Social Functioning Scale: relationships, independence performance, independence competence and recreation. Out of 30 people receiving occupational therapy those with a clinical level of negative symptoms reduced from 18 (64%) to 13 (46%), P=0.055. CONCLUSION: This pilot study suggested that individualized occupatio

Personal assistants in England and the factors associated with absenteeism

Personal assistants (PAs) have become an increasingly important element of long-term care (LTC) in England since the introduction of Direct Payments in 1996 and the Care Act 2014 legislation. The PAs, who are directly employed by social care users, can perform a number of support tasks including vital assistance in activities of daily living (ADL). Internationally these roles would be classed as domestic care work, including the employment of migrant care workers, e.g. in Germany and Austria. High turnover rates and work absenteeism in this market can cause disruption of these important daily activities, causing LTC users to potentially suffer neglect and poorer quality of life. Although there is research on turnover and absenteeism in nursing workforce in hospitals and LTC workers in nursing homes, little attention has been given to reasons for turnover of PAs and even less for absenteeism, which often precedes turnover, in a workforce of over 100,000 people in England. This research aims to fill this gap in knowledge by analyzing the reasons behind the absenteeism of PAs using quantitative methods. We used survey data of PAs in England, exploring the factors associated to one form of absenteeism — sick leave from work. After controlling for a number of factors ranging from job characteristics such as number of hours worked and type of contract, socio-economic characteristics from the PA and their employer, and supply and demand factors at local government region, the findings suggest a number of factors that significantly influenced sick leave, including distances traveled to work and number of PAs employed. Following the analysis, two people with life experience of LTC discuss the findings of the study and how they compare to their experiences of the market for PAs, providing a unique perspective from the people who could benefit the most from improving PA retention and reducing absenteeism

Risk factors for negative experiences during psychotherapy

Background: It is estimated that between 3% and 15% of patients have a negative experience of psychotherapy, but little is understood about this. Aims: The aim of this study was to investigate the factors associated with patients’ negative therapy experiences. Method: The data comprised 185 patient and 304 therapist questionnaires, 20 patient and 20 therapist interviews. Patients reported on an unhelpful or harmful experience of therapy, and therapists on a therapy where they thought the patient they were working with had a poor or harmful experience. These were transcribed and analysed using thematic analysis. Results: There was a Lack of fit between Patient needs, Therapist skills, and Service structures. This could result in Fault Lines, a tension between Safety and containment and Power and control. This tension led to Strain and Poor Engagement, which led to Consequences following the negative therapy experience. Conclusions: Patients require clear information, choice, involvement in decision-making, explicit contracting and clarity about sessions and progress. Opportunities for patient feedback should be the norm, where the therapist and service are vigilant for signs of deterioration and solutions considered.Clinical and methodological significance of this article: Estimates of “unwanted effects,” including long-lasting effects, of psychotherapy have ranged from 3% to 15%. Few empirical studies have been conducted in this area. This study aimed to address this gap and provide clinicians with a model of risk factors for negative therapy effects. The findings of this study indicate the importance of providing patients with a supportive service structure that offers clear information, choice and involvement in decision-making. Explicit contracting at the beginning of therapy and clarity about sessions and progress are also important in managing patient expectations throughout. Opportunities for patient feedback should be provided

Reprogramming roadblocks are system-dependent

Since the first generation of induced pluripotent stem cells (iPSCs), several reprogramming systems have been used to study its molecular mechanisms. However, the system of choice largely affects the reprogramming efficiency, influencing our view on the mechanisms. Here, we demonstrate that reprogramming triggered by less efficient polycistronic reprogramming cassettes not only highlights mesenchymal-to-epithelial transition (MET) as a roadblock but also faces more severe difficulties to attain a pluripotent state even post-MET. In contrast, more efficient cassettes can reprogram both wild-type and Nanog−/− fibroblasts with comparable efficiencies, routes, and kinetics, unlike the less efficient reprogramming systems. Moreover, we attribute a previously reported variation in the N terminus of KLF4 as a dominant factor underlying these critical differences. Our data establish that some reprogramming roadblocks are system dependent, highlighting the need to pursue mechanistic studies with close attention to the systems to better understand reprogramming

Hubble Space Telescope Ultraviolet Spectroscopy of Fourteen Low-Redshift Quasars

We present low-resolution ultraviolet spectra of 14 low redshift (z<0.8) quasars observed with HST/STIS as part of a Snap project to understand the relationship between quasar outflows and luminosity. By design, all observations cover the CIV emission line. Nine of the quasars are from the Hamburg-ESO catalog, three are from the Palomar-Green catalog, and one is from the Parkes catalog. The sample contains a few interesting quasars including two broad absorption line (BAL) quasars (HE0143-3535, HE0436-2614), one quasar with a mini-BAL (HE1105-0746), and one quasar with associated narrow absorption (HE0409-5004). These BAL quasars are among the brightest known (though not the most luminous) since they lie at z<0.8. We compare the properties of these BAL quasars to the z1.4 Large Bright Quasar samples. By design, our objects sample luminosities in between these two surveys, and our four absorbed objects are consistent with the v ~ L^0.62 relation derived by Laor & Brandt (2002). Another quasar, HE0441-2826, contains extremely weak emission lines and our spectrum is consistent with a simple power-law continuum. The quasar is radio-loud, but has a steep spectral index and a lobe-dominated morphology, which argues against it being a blazar. The unusual spectrum of this quasar resembles the spectra of the quasars PG1407+265, SDSSJ1136+0242, and PKS1004+13 for which several possible explanations have been entertained.Comment: Uses aastex.cls, 21 pages in preprint mode, including 6 figures and 2 tables; accepted for publication in The Astronomical Journal (projected vol 133

Moderate intensity exercise training combined with inulin-propionate ester supplementation increases whole body resting fat oxidation in overweight women

Background: Our previous work has shown that oral supplementation with inulin propionate ester (IPE) reduces intra-abdominal fat and prevents weight gain and that oral propionate intake enhances resting fat oxidation. The effects of IPE combined with exercise training on energy substrate utilisation are unknown. The aim of this study was to investigate the impact of 4-weeks IPE supplementation, in combination with a moderate intensity exercise training programme, on whole body fat oxidation and on plasma GLP-1 and PYY. Methods: Twenty overweight healthy women participated in randomised parallel study and underwent 4 weeks of supervised exercise training either with IPE (EX/IPE group) or Placebo (EX/Placebo group) supplementation. Before and after the intervention participants conducted an experimental trial, which involved collection of expired gas and blood samples in the fasted state and during 7 h of the postprandial state. Results: Within groups, the EX/IPE group significantly enhanced the amount of fat (Pre, 24.1 ± 1.2 g; Post, 35.9 ± 4.0 g, P &lt; .05) oxidised and reduced CHO (Pre, 77.8 ± 6.0 g; Post, 57.8 ± 7.7 g, P &lt; .05) oxidised, reduced body weight (Pre, 77.3 ± 4.2 kg; Post, 76.6 ± 4.1 kg, P &lt; .05) and body fat mass (Pre, 37.7 ± 1.9%; Post, 36.9 ± 1.9%, P &lt; .05). In EX/Placebo group, changes in amount of fat (Pre, 36.8 ± 3.9 g; Post, 37.0 ± 4.0 g) and CHO (Pre, 62.7 ± 6.5 g; Post, 61.5 ± 7.4 g) oxidised, body weight (Pre, 84.2 ± 4.3 kg; Post, 83.6 ± 4.3 kg) and body fat mass (Pre, 40.1 ± 1.9%; Post, 38.7 ± 1.5%) were not significant (P &gt; .05). Comparing between groups, changes in the amount of fat oxidised were significantly (P &lt; .05) different and a trend for difference was observed for amount of CHO oxidised (P = .06) and RER (P = .06). The interventions had no impact on fasting or postprandial plasma concentrations of GLP-1 and PYY. Conclusion: Moderate intensity exercise training programmes when combined with daily oral IPE supplementation may help overweight women to achieve increase in fat oxidation. The study was registered at clinicaltrials.gov as NCT04016350

Improving understanding of service-user involvement and identity : collaborative research traversing disability, activism and the academy

This article focuses on collaborative research traversing disability, activism and the academy to improve understanding of service-user involvement and identity. The project was undertaken by an organisation of disabled people, some of whom are, and some of whom are not, employed by academic institutions. It is an example of research fusion between disabled people’s activism and their work within the academy. The project aimed to identify meaningful ways of promoting involvement in the development of public services. Power relationships which shape the reality of disabled people’s participation in decision-making processes within services are critiqued. We explore ways in which disabled service users and our representative organisations can drive a form of political activism within services and through the academy to improve the lives of disabled people according to the priorities of disabled people themselves. This is not simply an academic project; we identify strategies for activism and change

Protein-coding variants implicate novel genes related to lipid homeostasis contributing to body-fat distribution.

Body-fat distribution is a risk factor for adverse cardiovascular health consequences. We analyzed the association of body-fat distribution, assessed by waist-to-hip ratio adjusted for body mass index, with 228,985 predicted coding and splice site variants available on exome arrays in up to 344,369 individuals from five major ancestries (discovery) and 132,177 European-ancestry individuals (validation). We identified 15 common (minor allele frequency, MAF ≥5%) and nine low-frequency or rare (MAF &lt;5%) coding novel variants. Pathway/gene set enrichment analyses identified lipid particle, adiponectin, abnormal white adipose tissue physiology and bone development and morphology as important contributors to fat distribution, while cross-trait associations highlight cardiometabolic traits. In functional follow-up analyses, specifically in Drosophila RNAi-knockdowns, we observed a significant increase in the total body triglyceride levels for two genes (DNAH10 and PLXND1). We implicate novel genes in fat distribution, stressing the importance of interrogating low-frequency and protein-coding variants