Policy Reform Research Articles

The social and emotional burden of Dravet syndrome on Spanish caregivers

BackgroundDravet syndrome (DS) is a rare developmental and epileptic encephalopathy that presents with frequent and prolonged seizures resistant to treatment as well as cognitive problems such as behavioral and developmental delays. However, there is a lack of scientific literature on the impact of this condition on caregivers and the family unit. ObjectivesTo find out the social and emotional impact of DS on the family unit, to provide a comprehensive understanding of the disease's effects on both the family and caregivers. Materials and methodsA tailored online survey was administered to Spanish DS families, collecting data on the employment, financial, emotional, and social status of patients and caregivers. ResultsA total of 112 Spanish caregivers participated in the study. The mean age of the 112 parents was 46.61 years, and 77.68 % of them were mothers. The majority of caregivers had to quit their jobs or reduce their working hours to take care of their child with DS, being the most of them mothers. Most of the caregivers felt that they were not well-informed by healthcare professionals (HCPs) and the Spanish National Health System (NHS). Despite access to resources, families often face financial strain and challenges in obtaining sufficient support, highlighting the need for enhanced social, economic, and psychological backing. In addition, both sentimental and social relationships were negatively impacted in the vast majority of respondents. ConclusionsThe study advocates for policy reforms, integrated social services, community programs, and multidisciplinary efforts to improve the quality of life and social integration for those affected by DS.

National charitable fundraising for the NHS, 1948–2023

AbstractWhether charitable fundraising might play a part in funding Britain's ostensibly tax‐funded NHS has been a longstanding dilemma, which until recently has received only occasional scholarly attention. In 1946, Aneurin Bevan argued that one of the main goals of the reformed health care system was to liberate health care from the ‘caprice of private charity’. Seven decades later, NHS Charities Together's Urgent Covid‐19 Appeal became a powerful societal rallying cry in the health emergency of the pandemic and raised £150 million in the process. This paper draws together findings from new archival research, a witness seminar with key actors in the NHS charity sector, and qualitative research based on interviews with NHS charity staff and trustees (N = 13), all conducted between 2021 and 2023. We investigate the way in which national appeals have been proposed, debated and implemented at different times in the NHS's history. We trace the recurrence of conflicting ideas about the acceptability of national fundraising for the NHS, about whether public loyalties are to their local services or the national ‘brand’ and about the introduction of national appeals into a complex ecology of local NHS charities. The history of charitable fundraising for the NHS is, we argue, neither a simple story of spontaneous public generosity, nor often of formal policy reform, but is an artefact of more complex dynamics between a changing cast of local and national actors over the last 75 years.

The Essence and Implementation of Ideological and Political Education within College English Curricula: A Grounded Theory Analysis

This study employs a grounded theory approach to critically analyze the essence and implementation of Ideological and Political Education (IPE) within College English curricula at Chinese universities. Analyzing 80 award-winning lesson plans from the "Teaching Star Competition" organized by the Foreign Language Teaching and Research Press, this research delineates the specific elements that constitute IPE and identifies the instructional methodologies through which it is integrated into language education. The findings highlight how IPE strategically merges linguistic training with civic education, aiming to cultivate a strong national identity and cultural pride while simultaneously enhancing students' global competencies. The core categories of IPE include critical thinking, professional ethics, and cross-cultural communication skills, all of which are supported by the innovative use of technological resources and adaptive pedagogical strategies. The study also details the comprehensive assessment mechanisms in place that evaluate both cognitive and affective outcomes, showcasing the multidimensional nature of IPE. This research contributes to the discourse on the integration of ideological education in Chinese higher education settings. This study not only clarifies the theoretical underpinnings of IPE but also offers practical insights into its operationalization, thereby guiding educational strategies aimed at achieving comprehensive educational objectives. The findings have implications for future curriculum development and educational policy reform, suggesting ways to enhance the effectiveness of IPE in fostering well-rounded individuals capable of contributing to both national and global contexts.

The Impact of Land Reform Policies on the Sustainable Management of Natural Resources in Local Communities

One of the main components of the sustainable development program is land reform. At the same time, there is a lot of land conflict caused by sustainable development programs that accelerate investment through palm mining, which impacts local communities' forced takeover of land and the destruction of natural resources. The research aims to determine to what extent land reform programs impact the protection of local communities and sustainable management of natural resources. This research is descriptive, using statute, conceptual, and case approaches. As well as comparing with three countries - Indonesia, Australia, and the Netherlands - to find out the obstacles to implementing land reforms in the country. The results of this research are, first, that land reforms have a good impact on protecting local communities. However, sustainable natural resource management still takes time and consideration of some aspects. Second, there are still crucial obstacles that hinder the implementation of land reform in Indonesia, Australia, and the Netherlands. Therefore, it is crucial to adopt a participatory and collaborative approach to planning and implementing land reform programs to guarantee that the interests of all parties are addressed sustainably and equitably.

POLICY ADVICE ON EQUAL ACCESS TO HEALTHCARE: WHAT'S NEW?

We have less than ten years to achieve the 2030 Sustainable Development Goals (SDGs). In the health sector, it is crucial to focus on Goal 3, which aims for the health and well-being of everyone. Despite progress, disparities in healthcare access continue to affect vulnerable populations. Some countries have implemented Universal Health Coverage (UHC) to ensure equal healthcare access. This editorial emphasized the need for targeted interventions, policy reforms, and increased public awareness to achieve equitable healthcare access and better health outcomes for diverse populations. Keywords: disparities, policy reforms, SDGs, UHC

The contribution of data-driven geotechnical assessments to infrastructure development and national economy

In the evolving landscape of geotechnical engineering, the advent of data-driven assessments heralds a paradigm shift, promising to redefine the contours of infrastructure development. This paper embarks on an intellectual quest to elucidate the evolution, significance, and transformative impact of these assessments, weaving through the complex interplay between technological advancements and traditional methodologies. Anchored in a robust methodological framework, the study employs a thematic analysis of peer-reviewed literature, aiming to distill the essence of data-driven approaches within the realm of geotechnical engineering and their consequential role in sculpting resilient, sustainable infrastructure. The scope of this scholarly endeavor spans an examination of the economic implications, challenges, and future directions of geotechnical assessments, culminating in strategic recommendations poised to navigate the labyrinth of implementation hurdles. Key findings illuminate the enhanced quality, safety, and economic efficiency engendered by these modern methodologies, juxtaposed against the backdrop of traditional practices. The study's conclusions advocate for a harmonious integration of green technologies, stakeholder engagement, and policy reformulation, underscoring the imperative for a concerted effort towards sustainable infrastructure development. In essence, this paper not only achieves its aim of delineating the pivotal role of data-driven geotechnical assessments but also charts a course towards a future where infrastructure development is synonymous with innovation, sustainability, and economic viability. Recommendations call for an increased infusion of green investments and the fostering of collaborative frameworks, heralding a new dawn in the quest for resilient infrastructure systems.

Mortgage Financing and Affordable Housing Nexus: Evidence from Developing Countries

The study investigated the relationship between mortgage financing and affordable housing in Kumasi, Ghana. It explores how mortgage financing influences affordable housing supply. It identified 23 banking institutions of which 11 of them are into mortgage financing. Adopting the exploratory sequential mixed method research design, the study selected banks households and, realtors as respondents using both purposive and accidental sampling techniques. The study found that, in Kumasi and Ghana, housing is affordable on paper but very expensive on the ground as none of the houses supplied on affordable housing projects are affordable to middle- and low-income earners. The study acknowledged that the high level of LtVR has made mortgage financing very expensive to ordinary Ghanaians and such calls for government-insured mortgages to make housing supply less expensive. It found that the ANOVA results from a regression analysis with a multiple R of 0.240 and R square of 0.058 shows that only 5.8% of the total mortgage lending rates are influenced by the interest rate pegged by the Bank of Ghana (BoG) and hence there is a very weak relationship between interest rate and mortgage lending rate in Ghana. The study concludes based on the findings that in Kumasi and Ghana, housing units that are supplied using mortgage financing by the government realtors are more expensive than those built by private estate developers with or without mortgages. Hence a complete reform of the mortgage policy to include government-insured mortgages to make the secondary mortgage market attractive was recommended.

Household Health Care Payments Under Rate Setting, Spending Growth Target, and Single-Payer Policies

Households have high burden of health care payments. Alternative financing approaches could reduce this burden for some households. To estimate the distribution of household health care payments across income under health care reform policies. Cross-sectional study with microsimulation used nationally representative data of the US population in 2030. Civilian, noninstitutionalized population from the 2022 Current Population Survey linked to expenditures from the 2018 and 2019 Medical Expenditure Panel Survey and 2022 National Health Expenditure Accounts were included. Rate regulation of hospital, physician, and other health care professional payments equal to the all-payer mean in the status quo, spending growth target at 4% annual per capita growth, and single-payer health care financed through taxes. Household health care payments (out-of-pocket expenses, premiums, and taxes) as a share of compensation. The synthetic population contained 154 456 records representing 339.5 million individuals, with 51% female, 7% Asian, 14% Black, 18% Hispanic White, 56% non-Hispanic White, and 5% other races and ethnicities (American Indian or Alaskan Native only; Native Hawaiian or other Pacific Islander only; and 2 or more races). In the status quo, mean household health care payments as a share of compensation was 24% to 27% (standard error [SE], 0.2%-1.2%) across income groups (median [IQR] 22% [4%-52%] below 139% of the federal poverty level [FPL]; 21% [4%-34%] for households above 1000% FPL [11% of the population]). Under rate setting, mean (SE) payments by households above 1000% FPL increased to 29% (0.6%) (median [IQR], 22% [6%-35%]) and decreased to 23% to 25% for other income groups. Under the spending growth target, mean (SE) payments decreased from 23% to 26% (SE, 0.2%-1.2%) across income groups. Under the single-payer system, mean (SE) payments declined to 15% (0.7%) (median [IQR], 4% [0%-30%]) for those below 139% FPL and increased to 31% (0.6%) (median [IQR], 23% [3%-39%]) for those above 1000% FPL. Uninsurance fell from 9% to 6% under rate setting due to improved Medicaid access, and to zero under the single-payer system. Single-payer financing based on the current federal income tax schedule and a payroll tax could substantially increase progressivity of household payments by income. Rate setting led to slight increases in payments by higher-income households, who financed higher payment rates in Medicare and Medicaid. Spending growth targets reduced payments slightly for all households.

Land Reform Policy in Determining Abandoned Land for Halal Tourism Destination Management Based on Fiqh Siyasah

The government has established a policy of utilizing abandoned land to develop halal tourism. However, the critical question is whether this policy, based on siyasah fiqh, impacts Indonesia's economic development. The research analyzed land reform policies, which determine abandoned land for managing halal tourism destinations based on Fiqh siyasah. This study employed normative legal studies and secondary data. The research indicated that the use of abandoned land for halal tourism development is not grounded in Islamic jurisprudence, and it potentially violates the provisions of Article 27 paragraph (2) and Article 28D paragraph (1) of the 1945 Constitution of the Republic of Indonesia, leading to violations of human rights.

Sex Work and Parenthood: The Experiences of Female Sex Workers Who Are also Parents or Caregivers: A Scoping Review.

Complex interactions exist between sex work and parenthood, impacting the lives of those in sex work who also provide care for others. This scoping review aims to review the experiences and challenges of female sex workers who are parents or caregivers, highlighting the socioeconomic, psychological, and legal dimensions of their dual roles. The rationale for this review stems from the recognition that sex workers who are also parents face unique and multifaceted challenges that significantly impact their wellbeing and that of their children. The five stages of a scoping review suggested by Arksey and O'Malley were followed in this study. A comprehensive literature search was conducted across electronic databases such as PubMed, PsycINFO, and Google Scholar. This study covered publications written in English from 2010 to 2023. Studies were selected based on their focus on sex workers who are parents or caregivers. Both qualitative and quantitative research articles were included. Thematic analysis was employed to synthesize findings across the selected studies. Studies published prior to 2013, studies that were not published in English, and studies that did not address the experiences of female sex workers who are parents or caregivers were excluded from this study. The review identified 14 studies meeting the inclusion criteria. Five key themes emerged from this study: (1) social stigma and healthcare discrimination; (2) legal challenges; (3) mental nexus; (4) risk behaviors and exposing children to a hazardous environment; and (5) social support. Sex workers who are also parents or caregivers navigate a multifaceted landscape of challenges and resilience. Policy reforms are needed to reduce stigma, provide financial support, and ensure legal protections for this key population.

Kirpan Sikh in Indonesian Legal Context

This research delves into the nuanced interplay between religious freedom and legal norms in Indonesia, with a specific focus on the Sikh practice of carrying the kirpan. This ceremonial dagger, integral to Sikh faith and identity, presents a unique challenge within Indonesia's diverse legal and socio-cultural landscape, marked by the country's commitment to Pancasila, which emphasizes religious freedom, unity in diversity, and social justice. By employing a normative juridical approach, this study scrutinizes the tension between the kirpan as a manifestation of religious expression and public safety concerns, utilizing comparative analysis to explore international perspectives and solutions. The investigation reveals a critical need for Indonesia to refine its legal and policy frameworks to more effectively accommodate religious practices like the kirpan. Drawing lessons from countries such as India, the UK, Canada, the US, and Sweden, the research advocates for inclusive legal reforms, enhanced public education, and robust intercultural dialogue. These strategies aim to reconcile the practice of carrying the kirpan with public safety imperatives, reflecting a deeper understanding and respect for religious diversity. The findings underscore the significance of integrating Indonesia's foundational principles of Pancasila into the contemporary discourse on religious freedom and minority rights. The study posits that respecting the kirpan within this ideological framework not only aligns with Indonesia's commitment to diversity and tolerance but also strengthens national unity and social harmony. This research contributes to the broader discourse on balancing religious expression and public safety in pluralistic societies, offering a comprehensive blueprint for policy and legal reforms that honor both religious freedom and collective well-being. It emphasizes the importance of dialogue, education, and legal inclusivity in fostering a society that upholds the dignity and rights of all individuals, irrespective of their religious practices. Keywords: Kirpan, Sikh, Freedom of Religion and Human Rights (FoRB), Criminal Law, Indonesia

The Influence of the #MeToo Movement on Socio-Political Dynamics in the MENA Region

This research explains the influence of the #MeToo movement phenomenon on social and political dynamics in the MENA. Against the backdrop of slow structural change and an authoritarian social contract in the region, the #MeToo movement expanded the space for women and men to overcome cultural taboos regarding gender-based violence. With social movement theory, this research analyses this phenomenon through political opportunities, mobilisation structures, and artistic framing. The analysis results show that the #MeToo movement in MENA gives women and men a voice in fighting gender oppression, changing cultural norms, and demanding policy reform by involving social media as a critical tool to trigger a change in society's perception of sexual violence and provide the impetus for broader reform in women's rights in the region.

Can green finance improve corporate ESG performance? Empirical evidence from Chinese A-share listed companies

ABSTRACT Leveraging China’s 2017 Green Finance Reform and Innovation Pilot Zone Policy (GFPP) as an exogenous shock, this study selects A-share listed companies spanning from 2014 to 2022 as the sample, employing the difference-in-differences (DID) to examine the impact and mechanism of GFPP on corporate ESG performance. The study reveals that GFPP significantly enhance corporate ESG performance, with corporate financing constraints and social responsibility awareness mediating this relationship. Furthermore, the incentivizing effect of GFPP on corporate ESG performance is notably pronounced in enterprises located in the eastern region, small-scale enterprises, non-state-owned enterprises, and heavily polluting industries.

The influence of crisis on policy formulation: the case of alcohol regulation in South Africa during COVID-19 (2020-21).

This study contributes to a neglected aspect of health policy analysis: policy formulation processes. Context is central to the policy cycle, yet the influence of crises on policy formulation is underrepresented in the health policy literature in low- and middle-income countries (LMICs). This paper analyses a detailed case study of how the COVID-19 crisis influenced policy formulation processes for the regulation of alcohol in South Africa, as part of COVID-19 control measures, in 2020 and 2021. It provides a picture of the policy context, specifically considering the extent to which the crisis influenced the position and power of actors, and policy content. Qualitative data were collected from nine key informant interviews and 127 documents. Data were analysed using thematic content analysis. A policy formulation conceptual framework was applied as a lens to describe complex policy formulation processes. The study revealed that the perceived urgency of the pandemic prompted a heightened sense of awareness of alcohol-related trauma as a known, preventable threat to public health system capacity. This enabled a high degree of innovation among decision-makers in the generation of alternative alcohol policy content. Within the context of uncertainty, epistemic and experiential policy learning drove rapid, adaptive cycles of policy formulation, demonstrating the importance of historical and emerging public health evidence in crisis-driven decision-making. Within the context of centralization and limited opportunities for stakeholder participation, non-state actors mobilized to influence policy through the public arena. The paper concludes that crisis-driven policy formulation processes are shaped by abrupt redistributions of power among policy actors and the dynamic interplay of evolving economic, political and public health priorities. Understanding the complexity of the local policy context may allow actors to navigate opportunities for public health-oriented alcohol policy reforms in South Africa and other LMICs.

Enhancing Taxpayer Compliance Through Fiscal Transparency, Participation and Accountability: Insights from Key Figures of Islamic Boarding Schools in Depok City

Purpose — This study explores the perspectives of key figures from Islamic boarding schools (Kiai Pesantren) in Depok City, Indonesia, regarding the efforts to promote fiscal transparency, participation and accountability (FTPA) by the government for enhancing taxpayer compliance. Design/Methodology/Approach — This study is based on the interpretivist paradigm. Keywords related to Muslims’ obligations, zakat and taxes were sourced to find relevant literature. A thematic analysis was conducted of in-depth interview data from Kiai Pesantren regarding their perspectives on state fund management. Findings — The results show the importance of FTPA in state fund management, especially when aligned with Islamic principles. Fiscal transparency involves directing tax funds towards poverty alleviation alongside infrastructure development. The involvement of religious organisations can be aimed at fostering moral responsibility among officials, while citizen participation can be facilitated through open data for budget planning. The accountability of public officials must be accompanied by efforts to minimise corruption and enforce strict punishments for corrupt activities. Moreover, fully crediting zakat payments for Muslim taxpayers could improve tax compliance, but this requires assurance through future policy reforms. Originality/Value — This study contributes to the literature by integrating Islamic principles into the framework of FTPA. Research Limitations/Implications — Broader insights into tax compliance management and support for Sharīʿah-based taxation could be addressed by involving Islamic scholars across countries.

Short report: Parents’ perspectives on inclusive schools for students with disabilities in Saudi Arabia

BackgroundEducational inclusion of students with disabilities has benefits for students with and without disabilities. However, general classroom education remains inaccessible for students with disabilities in Saudi Arabia despite policy reforms in the country. AimTo examine the perspectives of parents of children with and without disabilities on inclusion in general education classrooms. Methods and proceduresA cross-sectional survey investigated parents’ (N = 225) perspectives on inclusion in general and across four dimensions, namely impact on students with and without disabilities, and on parents and families of students with and without disabilities. Outcomes and resultsAlthough all participants support inclusion, parents of students with disabilities agreed more strongly with statements supportive of inclusion than parents of students without disabilities. Parents of students with severe disabilities expressed the least agreement with statements supporting inclusion. Conclusions and implicationsAll parents supported inclusion but were concerned about the preparation and provisioning of teachers as a key factor in the success of inclusion.

Energy poverty alleviation by social housing providers: A qualitative investigation of targeted interventions in France, England, and the Netherlands

Decisions made by social housing providers (SHPs) profoundly affect their tenants' energy affordability, a group characterised by above-average energy poverty rates. Concentrated deprivation in this tenure has intensified due to policy-driven ‘residualisation’, compelling SHPs to serve almost exclusively low-income and marginalised households. Despite this, research exploring the potential of SHPs to tackle energy poverty through targeted interventions for their most vulnerable tenants remains sparse. The 2021–2022 energy price crisis offers a unique context to investigate this issue, given its substantial impact on household energy affordability. This study delves into insights of social housing professionals through focus groups conducted in France, England, and the Netherlands. It examines their views on the effectiveness of interventions and assesses their feasibility within the respective institutional contexts. We find that SHPs generally favour retrofit prioritisation and behavioural interventions as effective means of supporting at-risk tenants, whereas alterations in rent setting or housing allocation are considered potentially impactful but often undesirable or impracticable. We identify institutional barriers and lack of data as key obstacles to SHPs' adoption of more targeted interventions. To empower SHPs in tackling energy poverty, housing policy reforms must acknowledge and address the significant impact of energy costs within total housing expenses.

Pengaruh Penerapan Ekonomi Hijau Terhadap Peningkatan Pendapatan Pada PT. Pertamina Geothermal Energy Tbk.

This study explores the impact of green economy implementation on revenue generation in the renewable energy sector in Indonesia, with a focus on PT Pertamina Geothernal Energy Tbk. Regression analysis shows that total electricity equivalent production has a significant effect on increasing the company's net profit, while government investment does not show a significant effect. These results suggest that increasing renewable energy production is one of the key factors in increasing revenue in this sector. The study also identified strategies to maximize the economic and environmental benefits of the transition to clean energy. These strategies include regulatory and policy reforms, effective management of public investment, and development of people- and environment-oriented policies. Implementing a green economy in Indonesia's renewable energy sector has the potential to increase revenues, promote sustainable economic growth, and preserve the environment.

Governance solutions for soft plastics in Australia: lessons from the discontinuation of REDcycle

ABSTRACT Soft plastics pose significant environmental and waste management challenges in Australia and globally. As a pioneering programme that aimed to enhance soft plastic collection and recycling in Australia, the REDcycle initiative was discontinued due to the lack of adequate end markets. By integrating actor-network and sustainability transitions theories, this article analyses existing soft plastic governance arrangements and examines lessons from the discontinuation of REDcycle. Suggested solutions for enhancing soft plastic governance include policy and regulatory reforms, local market enhancement and stakeholder collaboration strategies. The article contributes significantly to the ongoing scholarly and policy discourse on the circular plastics economy.

Urbanisation on the coastline of the most populous and developed state of Brazil: the extent of coastal hardening and occupations in low-elevation zones

Worldwide, coastlines have been replaced and altered by hard infrastructures to protect cities and accommodate human activities. In addition, human settlements are common and increasing in lowland areas threatened by coastal risk hazards. These urbanisation processes cause severe socioeconomic and ecological losses which demand policy reforms towards better coastal management and climate resilience. A first step in that direction is to comprehend the status of coastal hardening and occupation of vulnerable areas. Here, we mapped the coastline of the most populous and developed state of Brazil: São Paulo (SP). Our goal was to quantify the linear extent of natural habitats, artificial structures (AS), and occupations in low-elevation coastal zones (≤ 5 m) within 100 m from marine environments (LECZ100m) along the coastline and within estuaries. SP coast has a total extent of 244 km of AS, of which 125 and 119 km correspond to AS running along the coastline (e.g., seawalls, breakwaters) and extending from the shoreline into adjacent waters (e.g., jetties, pontoons, groynes), respectively. 63% of the total extent of AS is located in the most urbanised region. Breakwalls were the most common infrastructure (108 km), followed by jetties and wharves (~40 km each), and aquaculture and fishing apparatus (~24 km). Over 300 km of the SP coastline has inland occupations in LECZ100m: 235 and 67 km are adjacent to sandy beaches and estuarine/river margins, respectively. Coastal hardening is advanced in the central region of SP resulting from intense port activities and armoured shorelines. In other regions, much of coastal urbanisation seems to be driven by secondary usage of the cities, such as real estate development for beach houses and tourism. Our findings suggest that coastal urbanisation poses a major but often neglected source of environmental impact and risk hazards in SP and Brazil.