End-of-life care in Ireland: ethical challenges and solutions. Opening Statement to the Houses of the Oireachtas Joint Committee on Health and Children, 24 October 2013.

Children Report on End of Life and Palliative Care in Ireland, Volume 1.

An evaluation of the implications of the best interests of the child principle in the context of same-sex parenting in Ireland

Same-sex parenting is by no means a new phenomenon but the legal recognition and acceptance of gay and lesbian couples as parents is a relatively recent development in most countries. Traditionally, such recognition has been opposed on the basis of the claim that the best interests of children could not be met by gay and lesbian parents. This thesis examines the validity of this argument and it explores the true implications of the best interests principle in this context. The objective is to move away from subjective or moral conceptions of the best interests principle to an understanding which is informed by relevant sociological and psychological data and which is guided by reference to the rights contained in the UN Convention on the Rights of the Child. Using this perspective, the thesis addresses the overarching issue of whether the law should offer legal recognition and protection to gay and lesbian families and the more discrete matter of how legal protection should be provided. It is argued that the best interests principle can be used to demand that same-sex parenting arrangements should be afforded legal recognition and protection. Suggestions are also presented as to the most appropriate manner of providing for this recognition. In this regard, guidance is drawn from the English and South African experience in this area. Overall, the objective is to assess the current laws from the perspective of the best interests principle so as to ensure that the law operates in a manner which adheres to the rights and interests of children.

Building an index of well-being for children living in Ireland: conceptual, measurement and policy considerations

This study conceptualised and measured children’s well-being in Ireland and considered how such conceptualisations and approaches to the measurement of well-being might inform social policy for children and families living in Ireland. This research explored what is meant by children’s well-being and how it can be conceptualised and measured so as to reflect the multi-dimensionality of the concept. The study developed an index of well-being that was both theoretically and methodologically robust and could be meaningfully used to inform social policy developments for children and their families. For the first time, an index of well-being for children was developed using an explicitly articulated unifying theory of children’s well-being. Moreover, for the first time an index of wellbeing was developed for 13-year old children living in Ireland using data from Wave 2 of the national longitudinal study of children. The Structural Model of Child Well-being (SMCW), the theoretical framework that underpins the development of this study’s index, offers a comprehensive understanding of well-being. The SMCW builds on, and integrates, a range of already-established theories concerning children’s development, their agency, rights and capabilities into a unifying theory that explains well-being in its entirety. This conceptualisation of well-being moves beyond the narrow focus on child development adopted in some recent studies of children’s well-being and which perpetuate individualised and self-responsibilising conceptualisations of well-being. This study found that the SMCW can be meaningfully applied, both theoretically and operationally, to the construction of an index of well-being for children. While it was not the purpose of this study to validate the SMCW, in the process of developing the index, I concluded that there was a theoretical ‘fit’ between the conceptual orientation of the SMCW and the wider children’s well-being literature. The ‘nested’ structure of the SMCW facilitated the identification of domains, sub-domains and indicators of well-being reflecting typical conventions of index construction. The findings from the resulting index, in both its categorical and continuous forms, demonstrated how a comprehensive theory of well-being can be used to illustrate how children are faring and which children are experiencing poorer or better well-being. Furthermore, this study demonstrated how the SMCW and the resultant index can be meaningfully used to support the implementation and review of the national policy framework for children and young people in Ireland.

"On our way": identities and representations of African women seeking asylum in Ireland

This thesis provides the first explicit Postcolonial study of asylum in the Irish context that integrates Black Feminist analyses of intersectional identity with Postcolonial Feminist theories of representation. African women seeking asylum in the Republic of Ireland were key political instruments used by the state to re-draw racial lines. The study examines how, for a group of African women “On their Way” through asylum, identity and representation work hand in hand to force identities, subaltern spaces and bodies to occupy them. Rich biographical data is gathered through mixed art and drama methods over two intensive participatory research projects conducted in a small Irish city. Data analysis critically examines the poetics (practices that signify) and politics (the powers that govern these practices) and affective economies of global and local NGO visual representations, exposing how they consume, fragment, and appropriate African women’s identities and bodies. Though hypervisible, the women themselves “cannot speak”. The women in the study reported feeling “tired” and “used”. Asking “What work are they doing as they do asylum?” the study finds that black female identities and bodies are forced to perform political, cultural, emotional and material labour on their way through this context of Irish asylum. The author argues that Postcolonial Asylum is a performative encounter that re-scripts colonial race/class/gender discourse through a humanitarian alibi to naturalize European/white supremacy, reinscribe patriarchal power and justify racialised incarceration of bodies seeking asylum in the North. This study takes an interdisciplinary approach that centralizes Black and Postcolonial Feminist theory and innovates Participatory Art-Based Action methodology. Black and Postcolonial feminisms can recognize, theorize and replenish black female political and intellectual agency. Participatory Action research, if grounded in Black feminist epistemology and ethics, can allow participants to “speak back” to what is already said about them in spaces of convivial self-representation.

Examining current provision, practice and experience of initial teacher training providers in Ireland preparing pre service teachers for the inclusion of students with special education needs in physical education classes.

Research from an international perspective in relation to the preparation of pre service teachers in physical education and special educational needs indicates that initial teacher training providers are inconsistent in the amount of time spent addressing the issue and the nature of curricular content (Vickerman, 2007). In Ireland, research of Meegan and MacPhail (2005) and Crawford (2011) indicates that physical education teachers do not feel adequately prepared to accommodate students with Special Educational Needs (SEN) in physical education classes. This study examined initial teacher training provision in Ireland in the training of pre service physical education teachers in SEN. The methodology used was qualitative and included questionnaires and interviews (n=4). Findings indicated that time allocation (semester long modules), working with children with disabilities in mainstream settings (school or leisure centre based), lack of collaboration with other PETE providers (n=4) and a need for continued professional development were themes in need of address. Using a combined approach where the recently designed European Inclusive Physical Education Training (Kudlácěk, Jesina, & Flanagan, 2010) model is infused through the undergraduate degree programme is proposed. Further, the accommodation of hands on experience for undergraduates in mainstream settings and the establishment of inter institutional communities of practice, with a national disability research initiative, is essential to ensure quality adapted physical activity training can be accommodated throughout Ireland.

Assessment in primary education in Ireland

This doctoral study examines assessment in primary education in the Republic of Ireland. The nature and purpose of assessment offer an insight into the values which are prioritised by an education system. In 2011, in the Republic of Ireland, the Department of Education and Skills (DES) published a strategy aiming to improve standards of literacy and numeracy. The document, entitled, Literacy and numeracy for learning and life: the national strategy to improve literacy and numeracy for children and young people 2011-2020, contains improvement targets as measured by standardised tests. It also mandates the increased use of standardised tests in primary education, and directs that aggregated scores should be reported to both Boards of Management and the DES. The study is framed by the theoretical perspectives of Michel Foucault and Pierre Bourdieu. Both of these commentators examine social policy and practice in an effort to provide insight into the history and operation of social institutions. This study is especially influenced by Foucault’s archaeology and genealogy of knowledge, and his notion of governmentality. It is also particularly cognisant of Bourdieu’s thoughts on habitus, doxa and capital. The study contains reviews of literature in the areas of assessment, assessment policy, and assessment policy in Ireland. These reviews highlight current debate in each of these areas while also grounding this debate in an historical context. The dissertation contains four empirical sections. 1) It analyses policy documents prepared in the development of the published strategy as well as investigating the strategy itself. In so doing it is aware of the burgeoning influence of pan-national bodies on policy development. 2) A number of high profile policy makers were interviewed as part of the study and their views are interpreted in light of the findings of the literature reviews. 3) The perspective of teachers was sought through a questionnaire survey. This gathered data on these teachers’ views on the purpose of assessment as well as their actual practice. 4) Finally, children were also included as participants in this study. They were interviewed in focus groups and encouraged to contribute drawings as well on their views of assessment in primary school. Literacy and numeracy for learning and life is seen as a seminal document in Irish education. This study is significant in its analysis of original data from high profile policy makers, including two Ministers for Education and Skills. It is also significant in its inclusion of the perspectives of primary school pupils. Finally, the study considers the nature and role of assessment in a holistic manner by including the views of policy makers, teachers and pupils. The study notes that policy development in Ireland underwent a change in the preparation of Literacy and numeracy for learning and life and that international influences, while present, are also mediated to suit the local context. It also highlights a lack of clarity in the definition of assessment in primary education and argues that there is a lack of balance in the approaches that are prioritised. The study demonstrates that teachers are impacted by the strategy but that they also change it by focusing on their own concerns while using assessment tools. The children provide compelling evidence of the impact of assessment on the learner. The study shows how assessment tools (and school subjects) are valued with differing levels of importance by a variety of stakeholders.

Drug prescribing patterns in the General Medical Services Scheme in Ireland and projected costs to 2026

The primary objective is to investigate the main factors contributing to GMS expenditure on pharmaceutical prescribing and projecting this expenditure to 2026. This study is located in the area of pharmacoeconomic cost containment and projections literature. The thesis has five main aims: 1. To determine the main factors contributing to GMS expenditure on pharmaceutical prescribing. 2. To develop a model to project GMS prescribing expenditure in five year intervals to 2026, using 2006 Central Statistics Office (CSO) Census data and 2007 Health Service Executive{Primary Care Reimbursement Service (HSE{PCRS) sample data. 3. To develop a model to project GMS prescribing expenditure in five year intervals to 2026, using 2012 HSE{PCRS population data, incorporating cost containment measures, and 2011 CSO Census data. 4. To investigate the impact of demographic factors and the pharmacology of drugs (Anatomical Therapeutic Chemical (ATC)) on GMS expenditure. 5. To explore the consequences of GMS policy changes on prescribing expenditure and behaviour between 2008 and 2014. The thesis is centered around three published articles and is located between the end of a booming Irish economy in 2007, a recession from 2008{2013, to the beginning of a recovery in 2014. The literature identified a number of factors influencing pharmaceutical expenditure, including population growth, population aging, changes in drug utilisation and drug therapies, age, gender and location. The literature identified the methods previously used in predictive modelling and consequently, the Monte Carlo Simulation (MCS) model was used to simulate projected expenditures to 2026. Also, the literature guided the use of Ordinary Least Squares (OLS) regression in determining demographic and pharmacology factors influencing prescribing expenditure. The study commences against a backdrop of growing GMS prescribing costs, which has risen from e250 million in 1998 to over e1 billion by 2007. Using a sample 2007 HSE{PCRS prescribing data (n=192,000) and CSO population data from 2008, (Conway et al., 2014) estimated GMS prescribing expenditure could rise to e2 billion by2026. The cogency of these findings was impacted by the global economic crisis of 2008, which resulted in a sharp contraction in the Irish economy, mounting fiscal deficits resulting in Ireland's entry to a bailout programme. The sustainability of funding community drug schemes, such as the GMS, came under the spotlight of the EU, IMF, ECB (Trioka), who set stringent targets for reducing drug costs, as conditions of the bailout programme. Cost containment measures included: the introduction of income eligibility limits for GP visit cards and medical cards for those aged 70 and over, introduction of co{payments for prescription items, reductions in wholesale mark{up and pharmacy dispensing fees. Projections for GMS expenditure were reevaluated using 2012 HSE{PCRS prescribing population data and CSO population data based on Census 2011. Taking into account both cost containment measures and revised population predictions, GMS expenditure is estimated to increase by 64%, from e1.1 billion in 2016 to e1.8 billion by 2026, (ConwayLenihan and Woods, 2015). In the final paper, a cross{sectional study was carried out on HSE{PCRS population prescribing database (n=1.63 million claimants) to investigate the impact of demographic factors, and the pharmacology of the drugs, on GMS prescribing expenditure. Those aged over 75 (ẞ = 1:195) and cardiovascular prescribing (ẞ = 1:193) were the greatest contributors to annual GMS prescribing costs. Respiratory drugs (Montelukast) recorded the highest proportion and expenditure for GMS claimants under the age of 15. Drugs prescribed for the nervous system (Escitalopram, Olanzapine and Pregabalin) were highest for those between 16 and 64 years with cardiovascular drugs (Statins) were highest for those aged over 65. Females are more expensive than males and are prescribed more items across the four ATC groups, except among children under 11, (ConwayLenihan et al., 2016). This research indicates that growth in the proportion of the elderly claimants and associated levels of cardiovascular prescribing, particularly for statins, will present difficulties for Ireland in terms of cost containment. Whilst policies aimed at cost containment (co{payment charges, generic substitution, reference pricing, adjustments to GMS eligibility) can be used to curtail expenditure, health promotional programs and educational interventions should be given equal emphasis. Also policies intended to affect physicians prescribing behaviour include guidelines, information (about price and less expensive alternatives) and feedback, and the use of budgetary restrictions could yield savings.

Home birth in Ireland 1993-1997: a review of community midwifery practice

To date little is known about the practices of domiciliary midwives and the outcomes of home birth in Ireland. The purpose of this review is to provide some background information on the situation for women seeking a home birth and to document the outcomes of home births in Ireland between 1993 -1997. Design: Descriptive analysis of prospective data collected from domiciliary midwives regarding women who requested a home birth between 1993 and 1997. Participants: The questionnaire was distributed to 15 domiciliary midwives; this included all the domiciliary midwives known to the authors to be practising in Ireland at that time. Findings: During this period, 585 women planned to give birth in their home with the assistance of midwives, 500 women achieved this. The spontaneous vaginal delivery rate for women who commenced their labour at home was 96.9% (n = 554). These women gave birth without medications or other interventions. 544 (93%) of the women breastfed their babies and 538 (92%) were still breastfeeding at 6 weeks. This is the first review of domiciliary midwifery practice in Ireland in recent years. They obtained data from 11 independent midwives on 585 women who planned home births. Findings showed high rates of spontaneous vaginal delivery and breastfeeding. There were 500 babies born at home with three perinatal deaths, including one undiagnosed breech delivery, one infant with abnormal lungs on post-mortem and one infant with Potter's Syndrome who was stillborn.

Does attendance affect grade? An analysis of first year economics students in Ireland

This paper examines the relationship between attendance and grade, controlling for other factors, in first year economics courses in University College Cork. Determinants of both class attendance and grade are specified and estimated. We find that attendance is low, at least by comparison with US evidence. Hours worked and travel time are among the factors affecting class attendance. Class attendance, and especially tutorial attendance has a positive and diminishing marginal effect on grade, while hours worked in a part-time job have a significant negative effect on grade.

Molecular epidemiology of sexually transmitted human papillomavirus in a self referred group of women in Ireland

Background: Human papillomavirus (HPV) causes cervical cancer and external genital warts. The purpose of this study is to document the genotype distribution of HPV in females aged between 18 and 34 who self-referred to an STI clinic with visible external genital warts (EGW). Scrapings were taken from visible external genital warts (EGW). These scrapings were analysed by PCR for the presence of HPV DNA. Positive samples were then genotyped by means of a commercially available assay (LiPA). A comparison of genotyping results determined by the LiPA assay and direct amplicon DNA sequencing was also performed. Results: Ninety-two patients out of 105 samples (88%) had detectable levels of HPV DNA. The majority of individuals with EGW (66%) showed the presence of two or more genotypes. The most common HPV genotypes present in the study population were HPV-6, HPV-11, HPV-16, HPV-18, HPV-33 and HPV-53. Potential effects of vaccination on HPV molecular epidemiology indicate that 40% of the patients could have been protected from the high risk genotypes HPV-16 and HPV-18.Conclusion: This is the first report of the molecular epidemiology of external genital warts in women aged between 18 and 34 from Ireland based on results from a LiPA assay. The study shows that most individuals are infected with multiple genotypes including those with high oncogenic potential and that the newly available HPV vaccines could have a significant impact on prevalence of the most common HPV genotypes in this study population.

Self-cutting and prospective repetition of self-harm: studies of emergency department presentations in Ireland

Background Self-harm places an individual at increased risk of future self-harm and suicide, and indicates distress and maladaptive coping. Those who present to hospital with self-cutting form a significant minority of self-harm patients who are at increased risk of prospective repetition of self-harm and suicide compared with those presenting with intentional overdose. In addition to increased risk, there is emerging evidence of demographic, psychological, clinical, and social differences between those presenting with self-cutting and those presenting with overdose. Aim and Key Objectives The aim of the current doctoral work was to examine in detail the association between presenting with self-cutting and risk of prospective repetition. The objectives were: to identify evidence-based risk factors for repetition of self-harm among those presenting to emergency departments with self-harm; to compare demographic and presentation characteristics and prospective repetition across presentations of self-cutting only, self-cutting plus intentional overdose, and intentional overdose only; to compare prospective repetition and other characteristics within self-cutting presentations based on the type of treatment received; to compare self-cutting and intentional overdose patients on psychological risk and protective factors for repetition; and to examine the lived experience of engaging in repeated overdose and self-cutting. Methods The current doctoral work used a mixed-methods approach and is comprised of one systematic review and four empirical studies. The empirical studies were two registry-based prospective studies of Irish hospital presentations of self-harm, one prospective structured interview study, and one qualitative study using Interpretative Phenomenological Analysis. Results The systematic review identified several consistent and emerging risk factors for repetition of self-harm, compared to which self-cutting had a medium-sized effect. The registry studies demonstrated that the involvement of self-cutting, particularly less medically severe selfcutting, confers an increased risk of 1-month and 12-month repetition among Irish index selfharm presentations. The structured psychological study detected higher hopelessness and lower non-reactivity to inner experience among those presenting with self-cutting, and higher depression among those who repeated self-harm. Repeaters had lower baseline levels of protective psychological factors than non-repeaters and continued to have higher depression and hopelessness at follow-up. Finally, the qualitative study indicated that self-harm is a purposeful action taken in response to an overwhelming situation and is evaluated afterwards in terms of personal and social effects. Chosen method of self-harm seemed to be influenced by the desired outcome of the self-harm act, capability, accessibility and previous experience. Conclusion Despite limitations in terms of recruitment rates, the work presented in this thesis is innovative in examining the issue of the association between self-cutting and repetition from multiple perspectives. No one factor can reliably predict all repetition but self-cutting represents one consistent and easily detected risk factor for repetition. Those who present with self-cutting exhibit significant differences on demographic, clinical, and psychological variables compared with those presenting with intentional overdose, and seem to exhibit a more vulnerable profile. However, those who present with self-cutting do not form a discrete or homogenous group, and self-harm methods and levels of suicidal intent are liable to fluctuate over time.

An examination of the role of the sports and exercise medicine specialist in Ireland- from epidemiology to treatment

The expansion of the specialty of sports and exercise medicine (SEM) is a relatively recent development in the medical community and the role of the SEM specialist continues to evolve and develop. The SEM specialist is ideally placed to care for all aspects of physical activity not only in athletes but also in the general population. As an advocate for physical activity the SEM specialist plays a broad role in advising safe effective sports and recreation participation; screening for disease related to sports participation; examining and contributing to the evidence behind treatment strategies and evaluating any potential negative impact of sports injury prevention measures. In this thesis I will demonstrate the breadth of the role the Sports and Exercise Medicine Specialist from epidemiology to in-depth examination of treatment strategies. In Chapter 2, I examined the epidemiology of sports and recreation related injury (SRI) in Ireland, an area that has previously been poorly studied. We report on 3,172 SRI (14% of total presentations) presentations to the ED over 6 months. Paediatric patients (4-16 yrs) were over represented comprising 39.9% of all SRI presentation compared to 16% of total ED presentations and 18% of the general population. These injuries were serious (32% fractures) and though 49% of injuries occurred during organised competition/practice, 41.5% occurred during recreation-most often at home. In Chapter 3, I examined risk factors associated with hand injury in hurling. The previous chapter highlighted the importance of a firm evidence base underpinning treatment strategies. When measures to improve welfare are introduced not only must potential benefits be measured, so too must potential unwanted adverse outcomes. In this study I examined a cohort of adult hurlers who had presented to the ED with a hurling related injury in order to highlight the variables associated with hand injury in this population. I found the athletes who wore a helmet were far more likely (OR 3.15 95% CI (1.51-6.56) p= 0.002) to suffer a hand injury than athletes who did not. Very few of those interviewed (4.9%) used hand protection compared to 65% who used helmet and faceguard. The introduction of the helmet and faceguard in hurling has undeniably decreased the incidence of head and face injury in hurling. However in tandem with this intervention several observational studies have demonstrated an increase in the occurrence of hurling related hand injuries. This study highlights the importance of being cognisant of unanticipated or unintended consequences when implementing a new treatment or intervention. In Chapter 4, I examined the role of population screening as applied to sport and exercise. This is a controversial area –cardiac screening in the exercising population has been the subject of much debate. Specifically I define the prevalence of exercise induced bronchoconstriction (EIB) using a specifically designed sports specific field-testing protocol. In this study I found almost a third (29%) of a full international professional rugby squad had confirmed asthma or EIB, as compared with 12-15% of the general population. Despite regular medical screening, 5 ‘new’ untreated cases (12%) were elicited by the challenge test and in the group already on treatment for asthma/EIB; over 50% still displayed EIB. In Chapter 5, I examined the evidence supporting current treatment options for iliotibial band friction syndrome (ITBFS). The practice of sports medicine has traditionally been ‘eminence based’ rather than ‘evidence based’. This may be problematic as some of these practices are based upon flawed principles- for example the treatment of iliotibial band friction syndrome (ITBFS). In this chapter, using cadaveric and biomechanical studies I expand upon the growing base of evidence clarifying the anatomy and biomechanics of the area-thereby re-examining the principles on which current treatments are based. The role of the SEM specialist is broad; we chose to examine specific examples of some of the roles that they execute. An understanding of the epidemiology of SRI presenting to the ED has implications for individual patients, sports governing bodies and health resource utilisation. Population screening is an important tool in health promotion and disease prevention in the general population. Screening in SEM may have similar less well-recognised benefits. The SEM specialist needs to be conversant in screening for medical conditions concerning physical activity. A comprehensive understanding of the pathophysiology of a disease is required for its diagnosis and treatment. Due to the ongoing evolution of SEM many treatments are eminence-based rather than evidence‐based practice. Continued re-examination of the fundamentals of current practice is essential. An awareness of potential unwanted side effects is essential prior to the introduction of any new treatment or intervention. The SEM specialist is ideally placed to advise sports governing bodies on these issues prior to and during their implementation.

Courtship behaviour of western hedgehogs (Erinaceus europaeus) in a rural landscape in Ireland and the first appearance of offspring

A study was conducted to investigate the timing of the breeding season of western hedgehogs (Erinaceus europaeus) in a rural landscape in Ireland, their courtship activity and the first appearance and possible dispersal of juveniles. Between June 2008 and June 2010, 24 hedgehogs (18 ♂ and 6 ♀) were caught and monitored by radio tracking and direct following. A preponderance of males was recorded in both adults and juveniles at the study site and the sex ratio deviated significantly from a 1:1 ratio. Courtship behaviour took place between April and July and occurred almost exclusively in a nine ha pasture. An individual female paired with up to seven males in a season. The first appearance of juveniles was recorded in September (2008) and July (2009). The majority (n=22) of juvenile sightings, both alive and as road kill, occurred in July but they continued to be recorded up until November (n=3). The presence of juveniles at the study site in October 2008 and a pregnant female being found in September 2009 indicated that late litters occur in Ireland.