Why have women in eastern DR Congo increasingly turned to domestic courts in the aftermath of sexual violence, despite the fact that the state has consistently failed to provide basic goods and services to its citizens? Moreover, how do victims of violence interpret their first encounters with state law in an environment characterized by institutional fragility and humanitarian governance? This article analyzes the experiences and reflections of 50 self‐reported victims of sexual violence in eastern DR Congo. We find that human rights NGOs have served as critical mediators in persuading victims of violence to pursue legal remedy for sexual crimes. However, rather than being socialized to prioritize formal accountability mechanisms in precisely the ways that the architects of legal outreach programs intended, we find that victims of violence have turned to the law for a combination of material and ideational factors. Some appear to have internalized emerging norms of punitive criminal justice, while others have adopted the language of law instrumentally, in order to access crucial socio‐material benefits. We identify a paradox of opportunity and disempowerment, therefore, that characterizes our interviewees' experiences with the law.
Background: Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The current National Institute for Health and Care Excellence (NICE) guidance provides recommendations about what should be offered, but these are based on low quality evidence. The ENHANCE study aims to identify and investigate the different models of existing end-of-life care provision for infants, children, and young people in the UK, including an assessment of the outcomes and experiences for children and parents, and the cost implications to families and healthcare providers. Methods: This mixed methods study will use three linked workstreams and a cross-cutting health economics theme to examine end-of-life care models in three exemplar clinical settings: infant, children and young adult cancer services (PTCs), paediatric intensive care units (PICUs), and neonatal units (NNUs). Workstream 1 (WS1) will survey current practice in each setting and will result in an outline of the different models of care used. WS2 is a qualitative comparison of the experiences of staff, parents and patients across the different models identified. WS3 is a quantitative assessment of the outcomes, resource use and costs across the different models identified. Discussion: Results from this study will contribute to an understanding of how end-of-life care can provide the greatest benefit for children at the end of their lives. It will also allow us to understand the likely benefits of additional funding in end-of-life care in terms of patient outcomes.
Background Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Methods Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Results Three main themes were identified: one standalone theme (“Communication during end-of-life care”); and two overarching themes (“Getting end-of-life services and staff in the right place”, with two themes: “Access to, and staffing of end-of-life care” and “Inconsistent and insufficient funding for end-of-life care services”; and “Linking up healthcare provision”, with three sub-themes: “Coordination successes”, “Role of the networks”, and “Coordination challenges”). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusions Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals’ experiences of delivering care, and families’ experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.
The ‘conventional framework’ of economic evaluation, the comparative public sector healthcare costs and quality adjusted life year (QALY) of two or more interventions, has become synonymous with commissioning decisions in many countries. However, while useful as a framework in guiding value-based decisions, it has limited relevance in areas such as end of life care in children and young people, where the costs fall across multiple stakeholders and QALY gains are not the primary outcome. This paper makes the case that the restricted relevance of the ‘conventional framework’ has contributed to the inconsistent and varied provision of care in this setting, and to the knock-on detrimental impact on children nearing the end of their lives as well as their families. We explore the challenges faced by those seeking to conduct economic evaluations in this setting alongside some potential solutions. We conclude that there is no magic bullet approach that will amalgamate the ‘conventional framework’ with the requirements of a meaningful economic evaluation in this setting. However, this does not imply a lack of need for the summation of the costs and outcomes of care able to inform decision makers, and that methods such as impact inventory analysis may facilitate increased flexibility in economic evaluations.
Conclusion CYP referred to a SPPC service often have high levels of medical complexity, require frequent hospital care and are dependent on medical technologies. The symptom burden in this population is high; with all included children being on multiple medications. This requires SPPC services to have specialist training in navigating the complex health landscape experienced by these children and their families.
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