Challenges Facing the Disabled People’s Movement in the UK: An Analysis of Activist’s Positions

This thesis explores disabled activist’s perceptions of the challenges to British disabled people thrown up by changes in policy and cuts to services made by the coalition government of 2010-2015. These themes are explored through a qualitative analysis of interviews conducted with 20 disabled activists. The thesis begins with a presentation of the history of the British Disabled People’s Movement, drawing on writers such as Hunt (1966, 1981), Campbell and Oliver (1996) and Barnes and Mercer (2006). This is followed by an overview of available evidence concerning current challenges to the standard of living of disabled people. The next chapter involves a discussion of methods in the form of a narrative account of the development of the thesis. This is followed by an interrogation of prominent methodologies in disability research, pointing to the strengths and drawbacks of the emancipatory disability research approach (Oliver, 1992; Bares 2008) by drawing on critical realist perspectives (Sayer, 1992; Lawson, 1999). Moving on to an analysis of interview data, the combination of challenges currently facing disabled people are explicated. To make sense of challenges revealed at individual, collective and ideological levels, the notion of ‘enforced individualism’ (Roulstone and Morgan, 2009) is drawn upon. It is argued that, taken together, these challenges comprise novel forms of disablism that coexist with older and more familiar forms of disablism associated with paternalism and oppression within institutions. Following examination of these challenges, attention turns to the political positions and responses that disabled people have adopted in reaction. To theorise such responses, Fraser’s (1995: 2003) analysis of injustice and resistance is applied to the political positions taken by participants. Later chapters reflect further on injustice and resistance, drawing again on Fraser, as well as the extension of the social model of disability presented by Thomas (1999; 2007; 2010; 2012), the political theory of Holloway (1991; 1993a; 1993b; 2005) and the political economy of Polanyi (1944). These theories serve to highlight the nature of contemporary anti-disablist resistance, and also provide a novel means of conceptualising the relationship of disability studies and disability activism

'To wait or not to wait':lessons from running a wait-list controlled trial (ELSA) of a volunteer befriending service at the end of life within NHS, hospice and voluntary sectors

Background: Many innovations in palliative care are implemented without robust understanding of their effect. Trials are underused as they can be considered ethically and pragmatically challenging. Wait-list designs show promise as they enable all participants to receive the intervention, but with the rigour of a controlled trial. Aim: To provide recommendations on running wait-list trials in partnership with lay researchers within the hospice and voluntary sectors. Methods: A wait-list controlled trial testing volunteer delivered social action befriending services across 11 hospice, charity and NHS sites. Many non-clinical staff are responsible for site trial management and informed consent procedures, prepared with innovative face to face role play workshops. Participants are estimated to be in their last year of life, randomly allocated to receive the befriending intervention immediately or after a four week wait. Data collection at baseline, 4, 8 weeks: WHO QOL BREF, Loneliness scale, mMOS-SS, social networks. Intention to treat analysis includes fitting a linear mixed effect model to each outcome variable at 4, 8 and 12 weeks. ISRCTN 12929812 Results: Participants (currently n=117, recruitment commenced 6/15, completes 12/15) are currently at all trial stages. Methodological challenges centre on ‘the wait’. Initiation issues include acknowledging site staff design concerns and involving them in developing the protocol and documentation. Ongoing ‘wait’ issues involve providing support to address informed consent concerns and understanding trial procedures, addressing disappointment of ‘the wait’ allocation, allocating volunteers in a timely fashion, and the impact this has on understanding effect for this design. Conclusions: It is possible to run a rigorous and ethical wait-list trial in partnership with non-clinical site staff and volunteers. Key considerations include assessment of the wait period and data collection timing, understanding providing a service in the context of a trial, and clear responsive communications to support staff

The types of psychosocial factors associated with suicidality outcomes for people living with Bipolar Disorder: a scoping review

Bipolar Disorder is associated with high rates of suicidal thoughts, behaviors, and outcomes, yet the lived experience of suicidality and Bipolar Disorder is not particularly well understood. Understanding the role of psychosocial aetiologies in suicidality outcomes for those living with Bipolar Disorder is key for developing appropriately targeted interventions focusing on factors that are amenable to change. In line with PRISMA guidance, we conducted a scoping review to identify the types of psychosocial factors studied in relation to the experience of suicidality for people living with Bipolar Disorder diagnoses. Systematic literature searches identified a sample of 166 articles from which key study data were extracted and charted. A narrative synthesis of the reviewed literature is presented ordered by the factors investigated across studies, a frequency count of the types of psychological/social aetiologies studied, and a brief overview of the key findings for each aetiology. Most of the identified literature took the form of quantitative cross-sectional studies, with only one qualitative study and 18 quantitative prospective studies. The most studied aetiologies were trauma (specifically early adverse experiences and childhood traumas) and stressful life events, impulsivity (primarily subjective self-reported trait impulsivity), social support and functioning, and personality/temperament factors. Only six studies in the final sample reported basing their research questions and/or hypotheses on an explicit theoretical model of suicide. The literature was primarily focused on using self-report measurements of key aetiologies and on factors which lead to worsened suicidality rather than focusing on potentially protective or buffering factors. Future research needs to better justify the aetiologies investigated in relation to suicidality outcomes for people living with Bipolar Disorder, including a firmer basis in theory and hypothesis testing, more prospective designs, and the use of alternative assessments of psychosocial aetiologies in addition to self-report questionnaire

Quality of life trends in people with and without cancer referred to volunteer provided palliative care services (ELSA):A longitudinal study

Context Trends in symptoms and functional ability are known towards the end of life, but less is understood about quality of life, particularly prospectively following service referral. Objectives This study compares quality of life trajectories of people with and without cancer, referred to volunteer provided palliative care services. Methods A secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer). Quality of life data (WHOQOL-BREF) were collected at baseline (referral), 4, 8 and 12 weeks. Socio-demographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study. Results People with cancer had a significantly better quality of life at referral to the volunteer provided palliative care services than those with non-malignant disease despite similar demographic characteristics (Cohen d’s=.37 to .45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with non-malignant disease. Conclusion Referral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer provided palliative care services

'Being with' or 'doing for'?:How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Purpose To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Methods Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching. Results Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described—‘being there’ and ‘doing for’. ‘Being there’ encapsulated the importance of companionship and the relational dynamic between volunteer and patient. ‘Doing for’ described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious. Conclusion Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact

Task workflow design and its impact on performance and volunteers' subjective preference in virtual citizen science

Virtual citizen science platforms allow non-scientists to take part in scientific research across a range of disciplines. What they ask of volunteers varies considerably in terms of task type, variety, user judgement required and user freedom, which has received little direct investigation. A study was performed with the Planet Four: Craters project to investigate the effect of task workflow design on both volunteer experience and the scientific results they produce. Participants' feedback through questionnaire responses indicated a preference for interfaces providing greater autonomy and variety, with free-text responses suggesting that autonomy was the more important. This did not translate into improved performance however, with the most autonomous interface not resulting in significantly better performance in data volume, agreement or accuracy compared to other less autonomous interfaces. The interface with the least number of task types, variety and autonomy resulted in the greatest data coverage. Agreement, both between participants and with the expert equivalent, was significantly improved when the interface most directly afforded tasks that captured the required underlying data (i.e. crater position or diameter). The implications for the designers of virtual citizen science platforms is that they have a balancing act to perform, weighing up the importance of user satisfaction, the data needs of the science case and the resources that can be committed both in terms of time and data reduction

Perspective:Dietary Biomarkers of Intake and Exposure - Exploration with Omics Approaches

While conventional nutrition research has yielded biomarkers such as doubly labeled water for energy metabolism and 24-h urinary nitrogen for protein intake, a critical need exists for additional, equally robust biomarkers that allow for objective assessment of specific food intake and dietary exposure. Recent advances in high-throughput MS combined with improved metabolomics techniques and bioinformatic tools provide new opportunities for dietary biomarker development. In September 2018, the NIH organized a 2-d workshop to engage nutrition and omics researchers and explore the potential of multiomics approaches in nutritional biomarker research. The current Perspective summarizes key gaps and challenges identified, as well as the recommendations from the workshop that could serve as a guide for scientists interested in dietary biomarkers research. Topics addressed included study designs for biomarker development, analytical and bioinformatic considerations, and integration of dietary biomarkers with other omics techniques. Several clear needs were identified, including larger controlled feeding studies, testing a variety of foods and dietary patterns across diverse populations, improved reporting standards to support study replication, more chemical standards covering a broader range of food constituents and human metabolites, standardized approaches for biomarker validation, comprehensive and accessible food composition databases, a common ontology for dietary biomarker literature, and methodologic work on statistical procedures for intake biomarker discovery. Multidisciplinary research teams with appropriate expertise are critical to moving forward the field of dietary biomarkers and producing robust, reproducible biomarkers that can be used in public health and clinical research

Efficacy and safety of minimally invasive surgery with thrombolysis in intracerebral haemorrhage evacuation (MISTIE III): a randomised, controlled, open-label, blinded endpoint phase 3 trial

Acute stroke due to supratentorial intracerebral haemorrhage is associated with high morbidity and mortality. Open craniotomy haematoma evacuation has not been found to have any benefit in large randomised trials. We assessed whether minimally invasive catheter evacuation followed by thrombolysis (MISTIE), with the aim of decreasing clot size to 15 mL or less, would improve functional outcome in patients with intracerebral haemorrhage. MISTIE III was an open-label, blinded endpoint, phase 3 trial done at 78 hospitals in the USA, Canada, Europe, Australia, and Asia. We enrolled patients aged 18 years or older with spontaneous, non-traumatic, supratentorial intracerebral haemorrhage of 30 mL or more. We used a computer-generated number sequence with a block size of four or six to centrally randomise patients to image-guided MISTIE treatment (1·0 mg alteplase every 8 h for up to nine doses) or standard medical care. Primary outcome was good functional outcome, defined as the proportion of patients who achieved a modified Rankin Scale (mRS) score of 0-3 at 365 days, adjusted for group differences in prespecified baseline covariates (stability intracerebral haemorrhage size, age, Glasgow Coma Scale, stability intraventricular haemorrhage size, and clot location). Analysis of the primary efficacy outcome was done in the modified intention-to-treat (mITT) population, which included all eligible, randomly assigned patients who were exposed to treatment. All randomly assigned patients were included in the safety analysis. This study is registered with ClinicalTrials.gov, number NCT01827046. Between Dec 30, 2013, and Aug 15, 2017, 506 patients were randomly allocated: 255 (50%) to the MISTIE group and 251 (50%) to standard medical care. 499 patients (n=250 in the MISTIE group; n=249 in the standard medical care group) received treatment and were included in the mITT analysis set. The mITT primary adjusted efficacy analysis estimated that 45% of patients in the MISTIE group and 41% patients in the standard medical care group had achieved an mRS score of 0-3 at 365 days (adjusted risk difference 4% [95% CI -4 to 12]; p=0·33). Sensitivity analyses of 365-day mRS using generalised ordered logistic regression models adjusted for baseline variables showed that the estimated odds ratios comparing MISTIE with standard medical care for mRS scores higher than 5 versus 5 or less, higher than 4 versus 4 or less, higher than 3 versus 3 or less, and higher than 2 versus 2 or less were 0·60 (p=0·03), 0·84 (p=0·42), 0·87 (p=0·49), and 0·82 (p=0·44), respectively. At 7 days, two (1%) of 255 patients in the MISTIE group and ten (4%) of 251 patients in the standard medical care group had died (p=0·02) and at 30 days, 24 (9%) patients in the MISTIE group and 37 (15%) patients in the standard medical care group had died (p=0·07). The number of patients with symptomatic bleeding and brain bacterial infections was similar between the MISTIE and standard medical care groups (six [2%] of 255 patients vs three [1%] of 251 patients; p=0·33 for symptomatic bleeding; two [1%] of 255 patients vs 0 [0%] of 251 patients; p=0·16 for brain bacterial infections). At 30 days, 76 (30%) of 255 patients in the MISTIE group and 84 (33%) of 251 patients in the standard medical care group had one or more serious adverse event, and the difference in number of serious adverse events between the groups was statistically significant (p=0·012). For moderate to large intracerebral haemorrhage, MISTIE did not improve the proportion of patients who achieved a good response 365 days after intracerebral haemorrhage. The procedure was safely adopted by our sample of surgeons. National Institute of Neurological Disorders and Stroke and Genentech. [Abstract copyright: Copyright © 2019 Elsevier Ltd. All rights reserved.

Training future generations to deliver evidence-based conservation and ecosystem management

1. To be effective, the next generation of conservation practitioners and managers need to be critical thinkers with a deep understanding of how to make evidence-based decisions and of the value of evidence synthesis. 2. If, as educators, we do not make these priorities a core part of what we teach, we are failing to prepare our students to make an effective contribution to conservation practice. 3. To help overcome this problem we have created open access online teaching materials in multiple languages that are stored in Applied Ecology Resources. So far, 117 educators from 23 countries have acknowledged the importance of this and are already teaching or about to teach skills in appraising or using evidence in conservation decision-making. This includes 145 undergraduate, postgraduate or professional development courses. 4. We call for wider teaching of the tools and skills that facilitate evidence-based conservation and also suggest that providing online teaching materials in multiple languages could be beneficial for improving global understanding of other subject areas.Peer reviewe