Development In Ireland Research Articles

Review of national rare disease strategies: innovation driving change

Abstract Background A rare disease affects fewer than 5 in 10,000 people. More than 6,000 known rare diseases affect up to 6% of the European population. A national rare disease strategy sets out a country’s plan to reduce disease burden and improve quality of care for people with rare diseases. This review, requested by the Department of Health in Ireland to inform a new national strategy, described national rare disease strategies in 13 selected countries. Methods Strategies published from 2013 to 2023 were identified via online searches for Austria, Australia, Denmark, England, Finland, France, Germany, Ireland, the Netherlands, Northern Ireland, Portugal, Scotland and Wales. National representatives were contacted to confirm the identified resources. Data were extracted for the domains of: aims, priorities, implementation, governance and funding models. Descriptive analysis and narrative synthesis was undertaken. Results Improving treatment and coordination of care was a common overall aim. Priorities noted in all strategies were: screening and diagnosis; access to healthcare and coordination of services; rare disease research; and patient representation and empowerment. Implementation details varied to reflect the national context and time of strategy development. More recently-developed strategies included more precise actions and greater emphasis on innovations in genomics than older strategies. Strategies were developed, implemented, monitored and evaluated via combinations of newly-established bodies and or existing health authorities. Six countries did not specify a funding model or dedicated budget for strategy implementation. Conclusions National rare disease strategy contents and implementation approaches varied between countries and reflected innovations over time. This review will inform the development of Ireland’s new national rare disease strategy. Key messages • This review provided insights into national rare disease strategies over a 10-year period. • The findings will inform strategy development in Ireland, and are relevant to other countries.

Divergent Pathways in North–South Education Policy Development in Ireland in the 1920s: Exploring the Influence of the First Ministers for Education on Both Sides of the Border

ABSTRACT A long tradition of both State and religious interest and support characterised provision for education on the island of Ireland from the 1700s. Following the partition of Ireland in the 1920s, the newly created political entities of the Irish Free State and Northern Ireland forged separate and distinct education policy trajectories that largely reinforced and propagated the dominant identity in each jurisdiction. This article explores and assesses the contributions of the first Ministers for Education in the Irish Free State and in Northern Ireland in the 1920s, Eoin MacNeill and Lord Londonderry, respectively. A particular emphasis is placed on their influence, impact and legacy on primary education policy development and enactment. Ultimately it could be argued that both Ministers can be characterised to a certain extent as political failures in terms of introducing and embedding education policy that aligned with their personal or political ambition and ideology.

Weather window analysis for the deployment, operation, and maintenance of marine renewable energy devices in Irish coastal waters

AbstractThis study presents a detailed analysis of weather window accessibility for marine renewable energy (MRE) sites along Ireland's coast, utilizing a robust 12 year met-ocean dataset. The research focuses on key test sites—the atlantic marine energy test site (AMETS), the galway bay test site (GBTS), and the Westwave Demonstration Site—and expands to a broader spatial analysis of Irish coastal waters. By integrating significant wave height and wind data, the study evaluates site accessibility, emphasizing the paramount role of wave height in determining access. Findings reveal substantial spatial variability in accessibility, with high-resource areas like AMETS facing greater access challenges due to harsher conditions, as opposed to the more accessible GBTS. The study underscores the need for a nuanced, region-specific approach to MRE development in Ireland, highlighting how strategic planning and technological advancements are crucial in exploiting the country's significant MRE potential. The results also stress the importance of long-term data for accurate environmental variability assessment, offering vital insights for future MRE site viability and strategy development.

The tontine and the public sphere: Ireland and Scotland compared, 1772–1850

AbstractRecently, there has been a surge of interest in tontines, including their history and potential modern applications. While scholarly work has focussed on how tontines were organised, nominee selection, and the use of raised funds, little attention has been paid to their cultural impact. This article starts to address this gap by comparing tontine development in Ireland and Scotland, where the scheme was more than a revenue-raising tool. In these countries, it contributed to the public sphere through broad public discourse in newspapers and pamphlets and by raising funds for spaces including meeting rooms, coffeehouses, theatres, and hotels. The tontine’s influence in these regions therefore extended beyond the financial.

Representation strategies of the “internal” Other image in the early 21<sup>st</sup> century British literature

The article examines historical novels by the early 21 st century British writers where the authors turn to images of “internal” Others: Welsh, Irish and Scots. For each of these regions, we can identify topics that are associated specifically with them. Thus, the Welsh component is connected, first of all, with Celtic culture and social issues. Ireland is associated with religious theme, and Scotland is associated with a historical component. Edward Rutherfurd’s dilogy on Ireland “Dublin: Foundation” (2004) and “Ireland Awakening” (2006), presents the history of the Christianity development in Ireland. The writer emphasizes the continuity of paganism and Christianity. The following series of works analyzed in this article is dedicated to one of the most significant historical figures in Scotland, Robert the Bruce. The novels “Insurrection” (2010), “Renegade” (2012) and “Kingdom” (2014) examine the period of Scottish identity formation exemplified by King Robert and his opposition to the English monarchy. In Ken Follett’s trilogy “Century”, which includes “Fall of Giants” (2010), “Winter of the World” (2012) and “Edge of Eternity” (2014), we can note the socio-political issues associated, first of all, with the Welsh characters. At the same time, the idea common to all these works is the Celtic peoples’ community and their opposition to the English.

Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Parental investment or parenting stress? Examining the links between poverty and child development in Ireland

ABSTRACT This study investigates the relationship between multidimensional household poverty and cognitive and behavioural development during the formative years of childhood (from 9 months to 9 years), using nationally representative longitudinal data from Ireland for the cohort of children born in 2007-2008. The results indicate substantial inequalities in Irish children’s cognitive and behavioural outcomes at age 9 by multidimensional poverty duration. Children with at least one spell in poverty (out of four interviews) have worse cognitive and behavioural outcomes. Dynamic structural equation models provide evidence in support of a hybrid family investment/family stress model. Although family investment processes account for some of the cumulative effects of childhood poverty on cognitive outcomes, family stress processes help explain the links between poverty and both cognitive and behaviour outcomes in early childhood. Overall, poverty is strongly related to child outcomes over time via the direct effects of current poverty on child outcomes and path dependency in both poverty and child outcomes over time. There are also indirect effects via the two child outcomes reinforcing each other as children grow older (with the effects of behaviour problems dominating those of cognitive ability), even as the parental investment and maternal stress pathways become less pronounced.

Developing Population Health Management in Ireland-Challenges and Opportunities

Abstract Population Health Management (PHM) is the concept of aggregating population data with data from multiple care and service settings, the analysis of that data into a single, actionable patient record, and using the insights gained to identify that population's specific healthcare needs and develop a tailored response to them. This is achieved through the use of data analytics, artificial intelligence, and digital technologies, by stratifying populations according to the risk of deterioration in health. This stratification allows the development of early personalised interventions with an emphasis on prevention, which are key to better outcomes. The overall aims of PHM are to improve the health and well-being of the population, and the patient experience of care, to reduce healthcare costs, to improve workforce well-being and engagement, and to address inequalities in health and care. This discussion paper will cover the core building blocks for PHN, the tools required to carry out population health needs assessment; population segmentation, and risk stratification. The development of PHM and its use internationally will be discussed together with developments and opportunities provided in the context of the Irish healthcare system. It will discuss the current status of PHM development in Ireland using a population health maturity matrix. Evidence and examples of impact will be provided and recommendations to advance its progression within the Irish healthcare system. Challenges for the future advancement of PHM include a better definition of the content of the segmentation analysis and the intervention steps, demonstration of its added value, in particular its cost-effectiveness, and aligning the rationale for action that underpins current customization efforts. Regarding programme implementation, those programmes that are well-supported, funded, and given sufficient time to develop are most likely to demonstrate impact. Key messages • Future advancement of PHM requires a better definition of the content of the segmentation analysis and the intervention steps, and demonstration of its effectiveness and cost-effectiveness. • Programmes that are well-supported, funded, and given sufficient time to develop are most likely to demonstrate impact.

A theoretical framework for developing a health impact assessment implementation model in Ireland

Abstract Background A Health Research Board (HRB) four-year research study, which commenced in January 2023, seeks to explore the process of carrying out Health Impact Assessments (HIAs) with a view embedding the approach as normal practice in local and national policy development in Ireland. Methods A theoretical framework has been constructed to develop an HIA implementation model. The framework is based on the all-island Institute of Public Health Ireland's HIA guidance. The theoretical framework will examine factors affecting HIA implementation, using both the Consolidated Framework for Implementation Research (CFIR) and Normalisation Process Theory (NPT). An action research methodological approach will be used to gather data on the experiences that participants will reflect on while doing the HIA. Participants included in the study will be the members of the two HIA Steering Groups created for each HIA (12 participants in each HIA) and policy end-users of the HIA evidence from the city council and government ministries (20 participants for each HIA). Results The theoretical framework will be applied to two HIAs, in order to generate data in creating the HIA implementation model. HIA 1, commencing October 2023, will be conducted on the local government Cork City Development Plan. HIA 2, commencing January 2025, will be carried out on the Irish Government's Climate Action Plan. Preliminary results on the application of the theoretical framework to HIA 1 will be presented, as well as reflections for the planned HIA 2. Conclusions For the first time in Ireland and beyond, a theoretical framework has been developed employing innovative methodological approaches to building a contextualised HIA implementation model. Using action research in assessing the implementation of HIA, with a view to analysing the lived experience of Steering Group members as they conduct the HIAs, and policy end-users, will ensure an enhanced HIA implementation model. Key messages • The development of an innovative theoretical framework for the study of HIA. • The building of HIA capacity in Ireland using the newly revised Institute of Public Health guidance.

Unpacking the motivational variables which impact engagement in Lesson Study: Mathematics teaching self-efficacy and attitudes towards self-development

ABSTRACT Lesson study has received significant attention as a model of professional development among mathematics teachers. Evidence highlights its effectiveness in improving pedagogical practices and student learning, however, less is known about the predispositions which may encourage teachers’ participation in Lesson Study or the impact of participation on teachers’ attitudes. Such findings are relevant considering the voluntary context of teachers’ participation in professional development in Ireland. This research investigates the motivational variables which impact teachers’ participation in Lesson Study, specifically their self-efficacy in teaching mathematics for conceptual understanding and their attitudes towards self-development in Lesson Study. Post-primary mathematics teachers (N = 64), spanning various levels of experience in Lesson Study, completed a survey using a set of pre-validated scales. Findings indicate that teachers’ mathematics teaching self-efficacy is a significant predictor of their participation in Lesson Study. Furthermore, the research finds that teachers’ familiarity with Lesson Study impacts the likelihood of their participation in this model of teacher education. These findings build upon previous knowledge in this field and demonstrate the significance of teaching self-efficacy as a presage variable for developing a positive disposition towards Lesson Study. The paper discusses the implications of these findings for teacher education in Ireland.

Regional economic resistance and divergence in Ireland, 2011–22

Abstract This paper examines the resistance of Irish regions to potential future economic shock, focusing specifically on employment change in firms in receipt of assistance from the Irish government’s enterprise development agencies. The paper classifies both regions and sectors in terms of their employment performance during the course of the 2011–22 period and assesses the roles of sectoral composition and firm nationality in shaping regional performance. While nationality mix is significant, sectoral composition is seen as having a more important impact on regional employment performance. It then uses the same approach to predict the performance of regions in the context of potential future shocks post 2022. The paper suggests that the Border region is the least resistant to potential future shock. Other regions with relatively low resistance include the Mid East and the Midlands. The paper subsequently considers the implications of the findings for both regional economic divergence trends and the policy aim of balanced regional development in Ireland.

Evaluation of a new Perinatal Mental Health Service in a University Maternity Hospital.

Specialist Perinatal Mental Health Services (SPMHS) are a new development in Ireland. This service evaluation examined the impact of the introduction of a SPMHS multidisciplinary team (MDT) on prescribing practices and treatment pathways in an Irish maternity hospital. Clinical charts were reviewed to collect data on allreferrals, diagnoses, pharmacological and non-pharmacological interventions delivered in a SPMHS over a 3-week period in 2019. The findings were compared to the same 3-week period in 2020 following the expansion of the SPMHS MDT. In 2019 (n = 32) and 2020 (n = 47), most (75 and 79%, respectively) assessments were antenatal. The proportion of patients prescribed psychotropic medication within the SPMHS was not significantly different from 2019 (31%) to 2020 (23%), though more patients were already prescribed psychotropic medications at the time of referral (22% in 2019 v. 36% in 2020). There was an increase in MDT interventions in 2020 with more input from psychology, clinical nurse specialist (CNS), and social work intervention. Adherence to prescribing standards improved from 2019 to 2020. Prescribing patterns remained unchanged between 2019 and 2020. Improvement was observed in adherence to prescribing standards and there wasincreased provision of MDT interventions in 2020. Broader diagnostic categories were also used in 2020, possibly suggesting that the service is now providing more individualized care.

Developing Irelands first National Student Mental Health and Suicide Prevention Framework for Higher Education.

This article focuses on the development of Ireland's first National Student Mental Health and Suicide Prevention Framework for Higher Education. There is growing concern for student mental health in higher education nationally and globally. The majority of students are aged between 18 and 24, which is identified as a high-risk group for mental health difficulties. Recent surveys of student mental illness, mental distress, and low well-being have been recognized by the World Health Organization, the Union of Students in Ireland National Report on Student Mental Health in Third Level Education, the My World survey and the My World 2 study. The Higher Education Authority in Ireland made a commitment to the Department of Health Connecting for Life (Ireland's National Strategy to Reduce Suicide 2015-2020) to form national guidelines for suicide prevention in higher education. In order to deliver on this commitment, The National Student Mental Health and Suicide Prevention Framework was developed. The Framework is informed by international evidence and was the product of a collaborative cross sector and cross disciplinary team including health professionals, government representatives, educators, students, policy makers, community organizations, researchers and clinicians.

People-Powered Planning: Planning from the bottom up in a top-down system

This paper is concerned with spatial policy in Ireland. It adopts an historical lens to help explain why Ireland currently finds itself at the bottom of the European league table with regard to local governance. After categorising the Irish political and planning system as highly centralised, bureaucratic and linear, the paper uses a case study of the Moycullen village plan to show an alternate path towards place development in Ireland. This case study sets out to contrast the desire of a people to collaborate in the authorship of their place with the top down nature of spatial planning in Ireland. By making clear the methods and results of the project, this paper highlights the latent demand that exists in a community that is subject to national planning system that reduces their ability to affect change. Through the use of some innovative approaches, this project has sought to fire the geographic imaginary of a people with respect to their place.

Doctors’ engagement with a formal system of continuing professional development in Ireland: a qualitative study in perceived benefits, barriers and potential improvements

ObjectivesTo examine experiences of participation in a mandatory system of continuing professional development (CPD) among doctors in Ireland, in order to identify areas for improvement.DesignA qualitative cross-sectional design was used.Participants1408...

Managing stakeholder perception and engagement for marine energy transitions in a decarbonising world

There is a growing body of scholarship on the enabling conditions for energy transitions in various energy contexts globally. Transition measures need to address the concerns of communities that will host renewable energy infrastructure. Despite this, the consequences of energy transitions at the community level and in coastal environments have not received adequate attention. The case of the Corrib Gas field development in Ireland provides valuable insights into stakeholder issues surrounding strategic infrastructure developments. Material from case study work with over 70 stakeholders in a rural coastal region in Ireland's West is used to identify the cause of disputes in energy governance.The study shows that economic development is strongly linked to the cultural fabric, not just of the country, but of the locality. Here, a lack of trust of those in power had an influence on the conflict. The appointment of a mediator as an honest broker was a tipping point towards diffusion of tension and an adaptive response by all parties. The establishment of a body with a mandate to evaluate the application of ethical rules, based on good governance principles, is suggested as an option for a refined governance model.The insights are relevant for the energy transition in jurisdictions around the world. Given the urgent need for decarbonisation and the potential for marine renewable energy, lessons from the past, as documented in this paper, can help to inform better governance of common pool marine resources. This is increasingly important for the industrialisation of marine renewable energy and the need to reconcile the interests of government, industry and civil society.

Public perception of offshore wind farms in Ireland

Public attitude towards onshore wind farm development in Ireland has been extensively investigated. Prior to this study, there was little or no understanding of the perception of the Irish public of offshore wind farms (OSWFs). At this critical juncture in the development of the sector, it is necessary to gauge public opinion regarding offshore wind farms. Data was collected using an online survey (n = 1154) between May and June 2019. Results detail the opinions and attitudes of the Irish public toward the development of renewable energy projects in Irish waters. Demographics showed a 49% male, 51% female split. Education levels and age ranges roughly follow the same distribution levels as seen in the 2016 census of Ireland. Results indicate that attitudes to planned offshore wind farms change significantly with education levels. The evidence suggests that the link between climate change mitigation by energy emissions reduction and offshore wind farms is an important aspect of public perception that supports the development of the sector in Ireland. Most of those questioned believed that Ireland is too reliant on foreign energy and agreed that Ireland is running out of its limited fossil fuel reserves. The majority of people also believed that the government is not doing enough to reduce carbon emissions and should invest in offshore wind farms. Sixty-three percent of those surveyed believed that offshore wind farms will increase Ireland’s job creation potential. A clear majority of those who took part in the survey were in favour of offshore wind farms both on a local and national level. Just over half of the participants believed that offshore wind farms are the best solution to our energy situation. Thirty-seven percent of respondents trust offshore wind farm developers and 34% indicate that they were neutral on the subject. Fifteen percent of those who took part in the survey indicated that they mistrust developers. Approximately half of respondents had previous experience of offshore wind farms (the majority of whom had experienced offshore wind farms on holiday). A minority group had experience of offshore wind farms as a result of their daily commute or had an offshore wind farm in the vicinity of their homes. The data confirmed the hypothesis that experience of offshore wind farms has a significant effect on attitudes towards them. Results show that those with experience of offshore wind farms are more positive towards offshore wind farm development in Irish waters, than those with no experience of offshore wind farms. To further investigate the perception of those who are regularly exposed to offshore wind farms, a focus group involving five members of the public with regular exposure to Ireland’s only wind farm, Arklow Bank Wind Park, was held. The scope of sentiment expressed towards the offshore turbines ranged from benign to extremely positive. Returning to the results of the national survey; in terms of the effect on wildlife, tourism and aesthetics, respondents found offshore wind farms to be relatively unobtrusive and in general a positive addition to the sea scape. This report provides a resource for the offshore wind industry and policy makers alike. The data would suggest that an opportunity exists to create a public awareness campaign as a next step, to build on the favourable national mood and public understanding of the role of offshore wind in decarbonising the economy.

Learnings from the Adult Religious Education and Faith Development (AREFD) project for initial teacher education of religious educators

Since October 2018, researchers at the Mater Dei Centre for Catholic Education at Dublin City University have been engaged in the Adult Religious Education and Faith Development (AREFD) project. The overarching aim of the project was to facilitate a re-energising of adult religious education and faith development in Ireland. Working amongst local faith communities with an academic research focus, an area of interest that has emerged is how the insights gained from AREFD project can contribute to initial teacher education, particularly involving students preparing for employment as post-primary religious educators. This paper will outline some of the key themes that emerged from the data gathered in phase two of the AREFD project as it pertains to the initial teacher education (ITE) of religious educators. In phase two, a total of fourteen semi-structured interviews/focus groups were conducted between December 2019 and April 2021, featuring twenty-two people from across the island of Ireland who have a wealth of experience in AREFD across diverse contexts. The purpose of these interviews was to gather together the rich insights from the depth of experience of the interviewees on practicalities and possibilities central to adult religious education. The contexts in which they have worked are all pertinent to both the post-primary Religious Education curriculum in the Republic of Ireland and wider related learning experiences, in Ireland and beyond. Four key findings from this phase of the AREFD project are reported upon in this paper: the specific realm of AREFD as distinct from school-based religious education and catechesis; the need for intentional investment in AREFD; the physicality of religion; collaboration, communication and connection. These findings may contribute to the reflections of and course development by initial teacher education providers as they seek to offer the highest quality opportunities to their students, in the understanding that their students are adults themselves and that education is a lifelong endeavour.

Design Education for Sustainability: Identifying Opportunities in Ireland’s Second Level Education System

Design Education for Sustainability has the potential to accelerate and encourage education that contributes to the 2030 Sustainable Development Agenda. (1) Arguably the potential of Design Education for Sustainability remains underutilized in Ireland’s second level education system. (2) This article reports on findings conducted as part of a research project which examines Education for Sustainable Development in Irish secondary school Design Education subjects. The research draws on data gathered through critical ethnographic interviews with teachers in practice. (3) The findings explored in this article are the barriers faced by educators in relation to the further integration of Education for Sustainable Development in Ireland’s Design Education subjects. These findings offer a unique insight into the realities of educators in progressing towards Design Education for Sustainability. (4) In identifying the challenges, this article offers a starting point to tackle the barriers associated with integrating sustainability in Design Education within the Irish second level education system. (5) The article concludes by identifying how these barriers can be tackled head on in order to progressively integrate Education for Sustainable Development in Design Education subjects.

Opening up adult religious education and faith development in Ireland: the AREFD project

ABSTRACT This study reports on findings from an online survey which was carried out in Ireland, in May–June 2019, as part of the Adult Religious Education and Faith Development (AREFD) research project being conducted at the Mater Dei Centre for Catholic Education, Dublin City University. Data provided by 738 respondents to the survey are reported upon in this paper. The three areas focused on are the profile of the respondents, the content areas and skills in religious education and faith development they said they would like to engage with, and the forms and modes of delivery they preferred. The key findings point to the importance of identity, influence, and language, the broad and diverse interests expressed by participants, and the preferences they indicated for blended learning, evening engagement during the week, and local discussion groups. The findings of the study will be beneficial to those involved in developing new and creative approaches to adult religious education and faith development.