It is Time to Stop Talking and Start Doing: The Views of People with Learning Disability on Future Research

There is a need for people with learning disabilities to be involved in directing research to ensure that the research is meaningful to those it concerns. This paper describes a scoping exercise to determine the research priorities for the field of learning disabilities for the next ten years. It focuses specifically on the role of people with learning disabilities in setting this research agenda and describes the methodology used, which involved a series of consultation workshops. Analysis of the data from these generated six priority themes: access to health care; getting good support; the right to relationships; housing options; work and personal finance; inclusion in the community. The findings showed that it is possible for people with learning disabilities to participate in setting a research agenda and there was agreement between the different stakeholders on the fundamental priorities. Moreover, the inclusion of people with learning disabilities provided a perspective that could not be adequately represented by other stakeholder groups. People with learning disabilities were concerned that research has a meaningful impact and can lead to demonstrable improvements in care. In order for this to happen there is a need for widespread dissemination of accessible outputs that reach the relevant stakeholders

Extending health and safety protection to informal workers : an analysis of small scale mining in KwaZulu-Natal.

Thesis (M.Dev. Studies)-University of KwaZulu-Natal, Durban, 2006.This study explores the potential extension of occupational health and safety to informal small scale miners in South Africa. It was motivated by an understanding of the integral but much neglected relationship between the quality of work and the goals of poverty reduction and economic development. The study recognises that poor working conditions can reduce productivity and that work-related injury or illness is an unaffordable risk for those working without access to adequate social protection. Further, the protection of labour standards, including work health and safety, is an established basic right in those countries where relevant LLO Conventions have been ratified. Conventional occupational health and safety (OHS) regulation operates through formal employment structures and therefore offers limited or no protection to informal workers. In a country where increasing policy attention is being paid at national and local level to the employment and economic growth potential of the informal economy, this study practically explores within one sector - mining - how the institutional positions of both conventional and identified non-conventional OHS stakeholders work to constrain, or provide opportunities for, the extension of health and safety protection to those working informally. The focus on one kaolin and one clay/coal informal small scale mine site within KwaZulu-Natal and the use of in-depth interviews with workers and a range of identified stakeholders enabled a structured qualitative investigation into the health and safety challenges faced by informal miners; the nature of the support provided to small scale mining by the Department of Minerals and Energy (DME); and the institutional processes acting through national, provincial and local structures that do or could influence workers' access to OHS. The threats presented by each mine to worker and public, as well as environmental health and safety were found to be numerous and severe. There was also evidence of a negative impact of poor working conditions on both the health and economic security of the workers. Despite this, the study identified a vacuum of accountability for the labour protection of informal miners. Conventional mining OHS mechanisms are vertically driven, resource intensive and technocratic. They are both inappropriate for and inflexible towards meeting the challenges presented by informal work. In a minority of cases interdependent links between the responsibil ities of non-conventional OHS stakeholders and work health and safety are understood, but the lack of a worker focus, the institutional boundaries within which people work, their limited OHS knowledge, and the major financial and human resource constraints they face, appear to present significant barriers to any actual OHS intervention. Through the research process it became clear that the management and nature of the DME's small scale mining support strategy itself present fundamental barriers to the extension of OHS. The strategy is a product of a narrow conceptual isation of what is needed to achieve formalisation. This, and the lack of genuine worker representation and accountability within it, means that not only does the strategy fail to attend to OHS and a variety of other worker needs, but that the DME continues unchallenged in its neglect of such issues. With an understanding of the real constraints faced by both workers and the range of identified OHS stakeholders, and in view of the future plans to overhaul the existing national OHS framework in South Africa, the study concludes by outlining some practical opportunities and recommendations that could help to break down existing barriers to the OHS protection of informal workers. Conventional OHS mechanisms could be reoriented to take advantage of cheaper, simpler and more appropriate workerled approaches which could potentially achieve substantial improvements for large numbers of informal workers. Realistic opportunities also exist to more firmly secure the participation of promising non-conventional OHS stakeholders including, in this case, formal mining companies and local government. Finally, there are ways to bridge existing deep divides between social and economic institutional responsibilities that currently serve to obscure potential resource sharing and multiplier impact opportunities of working more collaboratively to improve OHS for the benefit of informal workers

The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study

SummaryBackgroundThe Confidential Inquiry into premature deaths of people with intellectual disabilities in England was commissioned to provide evidence about contributory factors to avoidable and premature deaths in this population.MethodsThe population-based Confidential Inquiry reviewed the deaths of people with intellectual disabilities aged 4 years and older who had been registered with a general practitioner in one of five Primary Care Trust areas of southwest England, who died between June 1, 2010, and May 31, 2012. A network of health, social-care, and voluntary-sector services; community contacts; and statutory agencies notified the Confidential Inquiry of all deaths of people with intellectual disabilities and provided core data. The Office for National Statistics provided data about the coding of individual cause of death certificates. Deaths were described as avoidable (preventable or amenable), according to Office for National Statistics definitions. Contributory factors to deaths were identified and quantified by the case investigator, verified by a local review panel meeting, and agreed by the Confidential Inquiry overview panel. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death and registered at the same general practices as those with intellectual disabilities were also investigated.FindingsThe Confidential Inquiry reviewed the deaths of 247 people with intellectual disabilities. Nearly a quarter (22%, 54) of people with intellectual disabilities were younger than 50 years when they died, and the median age at death was 64 years (IQR 52–75). The median age at death of male individuals with intellectual disabilities was 65 years (IQR 54–76), 13 years younger than the median age at death of male individuals in the general population of England and Wales (78 years). The median age at death of female individuals with intellectual disabilities was 63 years (IQR 54–75), 20 years younger than the median age at death for female individuals in the general population (83 years). Avoidable deaths from causes amenable to change by good quality health care were more common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). Contributory factors to premature deaths in a subset of people with intellectual disabilities compared with a comparator group of people without intellectual disabilities included problems in advanced care planning (p=0·0003), adherence to the Mental Capacity Act (p=0·0008), living in inappropriate accommodation (p<0·0001), adjusting care as needs changed (p=0·009), and carers not feeling listened to (p=0·006).InterpretationThe Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths—factors that can largely be ameliorated.FundingDepartment of Health for England

Moving house: how much choice do people with learning disabilities have about where they live?

Background People with learning disabilities have the right to choose where they live. However, evidence suggests people's choices are limited due to a shortage of housing. Methods 200 Lives was a mixed methods research project, which evaluated supported living and residential care for people with learning disabilities in England; 107 people with learning disabilities took part, 77 from supported living and 30 from residential care. Findings Two-thirds of people in supported living compared to half of those in residential care chose the place they were currently living in; however, less than half of all participants looked at another property before moving to their current house. People in supported living were significantly more likely to have chosen who they lived with. Reasons for moving mainly consisted of reactive moves following an issue with the previous living situation. Many people had not considered moving in the future. Conclusion Findings suggest that people's choices about where to live were constrained regarding the properties on offer and who to live with. This suggests that people's housing rights were not being upheld. Support and housing providers should ensure that housing can adapt to people's changing needs and wishes over the course of their lives

The cyclical cascade of HIV care: Temporal care engagement trends within a population-wide cohort

Background: The traditional HIV treatment cascade aims to visualise the journey of each person living with HIV from diagnosis, through initiation on antiretroviral therapy (ART) to treatment success, represented by virological suppression. This representation has been a pivotal tool in highlighting and quantifying sequential gaps along the care continuum. There is longstanding recognition, however, that this may oversimplify the complexity of real-world engagement with HIV services in settings with mature high-burden HIV epidemics. A complementary “cyclical” cascade has been proposed to represent the processes of disengagement at different points on the care continuum, with multiple pathways to re-engagement, although the feasibility of implementing this at scale has been uncertain. This study aimed to populate, refine, and explore the utility of a cyclical representation of the HIV cascade, using routine data from a high-burden HIV setting. Methods and findings: This observational cohort study leveraged person-level data on all people living with HIV in the Western Cape (WC), South Africa, who accessed public health services in the 2 years prior to 31 December 2023. Programme data from disease registers were complemented by data from pharmacy and laboratory systems. At study closure, 494 370 people were included, constituting 93% of those of those estimated to be living with HIV in the province, of whom 355 104 were on ART. Substantial disengagement from HIV care was evident at every point on the cascade. Early treatment emerged as a period of higher risk of disengagement, but it did not account for the majority of disengagement. Almost all those currently disengaged had prior experience of treatment. While re-engagement was also common, overall treatment coverage had increased slowly over 5 years. The transition to dolutegravir-based regimens was dramatic with good virological outcomes for those in care, notwithstanding a clearly discernible impact of the Coronavirus Disease 2019 (COVID-19) pandemic on viral load (VL) testing. People currently engaged and disengaged in care are similar with respect to age and gender. Those who died or disengaged recently were previously distributed across a range of cascade statuses, and a substantial proportion of those newly initiating and re-initiating treatment were no longer on treatment 6 months later. The main limitation of this study was incomplete evidence of HIV testing, linkage to HIV-specific services, and out-of-facility mortality. Conclusions: Using routine data, it was possible to populate and automate a cyclical cascade of HIV care that continuously captured the nonlinear care journeys of individuals living with HIV. In this generalised mature HIV epidemic, most people are treatment experienced. Disengagement is common and occurs at various points along the cascade, making it challenging to identify high-impact intervention opportunities. While historical HIV cascades remain valuable for target setting and service monitoring, they can be complemented with insights from more detailed cyclical cascades

Health System Strengthening Through Professional Midwives in Bangladesh: Best Practices, Challenges, and Successes

In 2008, a cadre of professional midwives was introduced in Bangladesh. Since then, 120 midwifery educational programs have been established. There are 2,556 midwives serving at 667 government health facilities, and there are more midwives working in nongovernmental organizations and the private sector. This case study documents the process of establishing a midwifery profession with distinct midwifery expertise in Bangladesh and aims to guide other low- and middle-income countries in best practices and challenges. We describe the national administrative groundwork for the profession's launch, roll-out of an education program aligned with the International Confederation of Midwives, national deployment, enabling environments in deployment, and the professional association. Bangladesh's professional midwives' roles in humanitarian response and the COVID-19 pandemic are also discussed. The first and final authors were closely involved in supporting the government's establishment of the profession, and their direct experience is drawn upon to contextualize the topics. In addition, the authors conducted a desk review of documents that supported the profession's integration into the health system and documented its results. Both routine program data and existing research studies were reviewed. Outcomes show that midwives are deployed to 95% of government subdistrict hospitals. About 50% of these hospitals are fully staffed with 4 midwives, and within the hospitals, midwives are in charge of 90% of the maternity wards and attend 75%-85% of the births. Since the midwives' deployment, significant quality improvement for most World Health Organization indicators has been found, along with increases in service utilization. The experience of establishing a new midwifery profession in Bangladesh shows that it is possible for a lower middle-income country to introduce a globally standard midwifery profession, distinct from nursing, to improve quality sexual, reproductive, maternal, newborn, and adolescent health services in both humanitarian and development settings