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Background: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus‐based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. Aims: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. Methods & Procedures: An anonymous cross‐sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E‐Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed‐ended survey responses and content analysis of open‐ended responses are presented. Outcomes & Results: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for ≤ 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. Conclusions & Implications: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper addsWhat is already known on the subjectThe published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches.What this paper adds to existing knowledgeThis study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta‐perceptions of themselves within the multidisciplinary team.What are the potential or actual clinical implications of this work?Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

This paper presents the results of a qualitative study completed with 16 designated liaison persons (DLPs) for child protection in Ireland. The care practices and systems in place in Irish primary schools that support child protection work are the particular focus of this paper. Recent changes in legislation, following the publication of the Children First Act 2015 (Government of Ireland, Irish Statute Book; Office of the Attorney General), are considered. The Act recognises all teachers registered with the Teaching Council as mandated persons. Mandated persons are recognised as persons who work with children and young people and are required to report child abuse, above a defined threshold, which comes to their attention in the course of their professional or employment duties. Semi‐structured interviews were completed with the DLPs, and an exploratory approach using interpretative phenomenologial analysis was deemed the most suitable method of analysis for the study. Five superordinate themes emerged from the findings, alongside a number of subordinate themes; the theme 'The School Story' which focuses on the care practices that are undertaken in schools daily is illuminated throughout this paper. The findings highlight the need for formal acknowledgement of this work in schools and also for greater interagency communication and collaboration in the area of child protection. 'This paper presents the results of a qualitative study completed with 16 designated liaison persons (DLPs) for child protection in Ireland' Key Practitioner Messages: Teachers, in their day‐to‐day work in schools and through the care structures in place in schools, contribute in a significant way to the safety and protection of children.There is a need for greater communication and collaboration between schools and the Child and Family Agency to support children at risk of abuse effectively.There should be formal recognition in the evaluations undertaken by the Department of Education of the care practices that exist in schools. [ABSTRACT FROM AUTHOR]

In a contemporary context dominated by reports of the historical institutional abuse of children and young people in residential children's homes, and where the voice of workers is largely absent, this study explores the views and experiences of 26 workers in the Republic of Ireland regarding relationship‐based practice. Using an exploratory, qualitative approach and informed by 'appreciative inquiry'; semi‐structured interviews were undertaken with 26 residential care workers. The findings highlight that relationship‐based practice has not been fully understood and/or embraced in practice because of a culture of fear that has permeated the Irish residential childcare system. Using theoretical concepts associated with the sociology of fear, the paper explores their effects on practice and argues that these are amplified given the current low status of residential care workers, the impact of media reports and the influence of current discourses around professional practice in which 'objective' and 'emotionally detached' practice is viewed as synonymous with efficiency and effectiveness. The paper ends by considering implications for professional practice in residential childcare settings. [ABSTRACT FROM AUTHOR]

Research highlights the role of key actors and relationships in supporting the educational attainment and progress of children in care and care leavers. We know less about how relationships influence the educational journeys of people with care experience over time and how to support the educational progress and engagement of adults with care experience. The principle of "linked lives" is central to the life course perspective referring to the interdependence of human lives throughout the life course. This paper explores how the principle of linked lives can illuminate our understanding of how relationships positively influence the educational journeys of adults with care experience over time. Educational life history interviews were conducted with 18 care‐experienced adults (aged 24–36) in Ireland. Findings suggest that the principle of linked lives is a valuable conceptual tool for providing new insights on this issue. Four key themes were identified: (a) opportunities for educational support are present across the life course; (b) "family" is a central source of educational support; (c) there is intergenerational capacity for educational support; and (d) relationships beyond the "family" are supportive of education. Implications for practice, policy, and research are explored. [ABSTRACT FROM AUTHOR]

Aim: To establish the incidence of infantile spasms in children in the southern region of the Republic of Ireland and to compare the incidence of infantile spasms before and after the introduction of therapeutic hypothermia in infants with hypoxic-ischemic encephalopathy (HIE).Method: Children born between 2003 and 2015 and diagnosed with infantile spasms (epileptic spasms with or without hypsarrhythmia) in the first 2 years of life were identified through audits of electroencephalography reports and paediatric neurology patient lists. Data on live births were obtained from the regional hospital statistics databases. Medical charts of infantile spasm cases were reviewed for demographic information, diagnostic workup results, treatment response, disease course, and developmental outcome.Results: Forty-two infants with infantile spasms were identified. The cumulative incidence of infantile spasms up to the age of 2 years was 4.01 per 10 000 live births. Difference due to sex was minimal (22 males, 20 females) and most infants were delivered at or near term with gestational ages ranging between 30.0 and 41.8 weeks (median [interquartile range] 39.6wks [38.1-40.0wks]). The aetiology for infantile spasms was identified in almost two-thirds of cases, with HIE being the single most common cause (n=7). Other causes included chromosomal and monogenetic abnormalities (n=8). Infantile spasms occurred in moderate and severe grades of HIE, with a significantly higher incidence in those with severe HIE (p=0.029). Infants with severe HIE who did not receive therapeutic hypothermia were six times more likely to develop infantile spasms compared to those who did, but the difference was not statistically significant (4 out of 16 vs 1 out of 24, p=0.138).Interpretation: This study provides detailed information about infantile spasms before and after the introduction of therapeutic hypothermia. HIE severity is a risk factor for the development of infantile spasms. The introduction of therapeutic hypothermia may have had an impact, but the effect was hard to ascertain in this cohort due to the small number of infants.What This Paper Adds: The incidence of infantile spasms and patient characteristics in the southern region of the Republic of Ireland is similar to internationally published data. None of the infants with a history of mild hypoxic-ischemic encephalopathy (HIE) developed infantile spasms. The risk of infantile spasms was higher in infants with severe HIE. Infantile spasms were more frequent in infants with severe HIE not treated with therapeutic hypothermia. [ABSTRACT FROM AUTHOR]

Background: Longitudinal cohort studies gather large amounts of data over time, often without direct benefit to participants. A positive experience may encourage retention in the study, and participants may benefit in unanticipated ways. Objective: To explore first‐time mothers' experiences of taking part in a longitudinal cohort study and completing self‐administered surveys during pregnancy and at 3, 6, 9 and 12 months' postpartum. Design: Content analysis of comments written by participants in the Maternal health And Maternal Morbidity in Ireland study's five self‐completion surveys, a multisite cohort study exploring women's health and health problems during and after pregnancy. This paper focuses on what women wrote about taking part in the research. Ethical approval was granted by the site hospitals and university. Setting and participants: A total of 2174 women were recruited from two maternity hospitals in Ireland between 2012 and 2015. Findings: A total of 1000 comments were made in the five surveys. Antenatally, barriers related to surveys being long and questions being intimate. Postpartum, barriers related to being busy with life as first‐time mothers. Benefits gained included gaining access to information, taking time to reflect, stopping to think and being prompted to seek help. Survey questions alone were described as valuable sources of information. Discussion and conclusions: Findings suggest that survey research can "give back" to women by being a source of information and a trigger to seek professional help, even while asking sensitive questions. Understanding this can help researchers construct surveys to maximize benefits, real and potential, for participants. [ABSTRACT FROM AUTHOR]

Aim: To review the demographics and clinical and paraclinical parameters of children with myelin oligodendrocyte glycoprotein (MOG) antibody-associated relapsing disease.Method: In this UK-based, multicentre study, 31 children with MOG antibody-associated relapsing disease were studied retrospectively.Results: Of the 31 children studied, 14 presented with acute disseminated encephalomyelitis (ADEM); they were younger (mean 4.1y) than the remainder (mean 8.5y) who presented with optic neuritis and/or transverse myelitis (p<0.001). Similarly, children who had an abnormal brain magnetic resonance imaging (MRI) at onset (n=20) were younger than patients with normal MRI at onset (p=0.001) or at follow-up (p<0.001). 'Leukodystrophy-like' MRI patterns of confluent largely symmetrical lesions was seen during the course of the disease in 7 out of 14 children with a diagnosis of ADEM, and was only seen in children younger than 7 years of age. Their disability after a 3-year follow-up was mild to moderate, and most patients continued to relapse, despite disease-modifying treatments.Interpretation: MOG antibody should be tested in children presenting with relapsing neurological disorders associated with confluent, bilateral white matter changes, and distinct enhancement pattern. Children with MOG antibody-associated disease present with age-related differences in phenotypes, with a severe leukoencephalopathy phenotype in the very young and normal intracranial MRI in the older children. This finding suggests a susceptibility of the very young and myelinating brain to MOG antibody-mediated mechanisms of damage.What This Paper Adds: Myelin oligodendrocyte glycoprotein (MOG) antibody-associated demyelination manifest with an age-related phenotype. Children with MOG antibody and 'leukodystrophy-like' imaging patterns tend to have poor response to second-line immunotherapy. [ABSTRACT FROM AUTHOR]

Background/aim The successful development and maintenance of professional identity is associated with professional development and retention in the health workforce. This paper explores students' perspectives on the ways pre-entry experiences and curricula content shape professional identity. Methods An online cross-sectional survey was sent to students enrolled in the final year of entry-level programmes in five countries. Descriptive statistical analyses of data were completed. Results The results reflect the perceptions of 319 respondents from five countries. Respondents identified professional education (98%) and professional socialisation during placement (92%) as curricula components with the greatest influence on professional identity formation. Discipline-specific knowledge such as, occupation-focussed models and occupational science were ranked lower than these aspects of practice. The students' length of programme and level of entry-level programme did not impact on these results. Conclusion When designing curricula educators need to be mindful that students perceive practice education and professional socialisation have the greatest affect on professional identity formation. The findings reinforce the need for curricula to provide students with a range of practice experiences, which allow the observation and application of occupation-based practices. It highlights a need for educators to provide university-based curricula activities, which better prepare students for a potential dissonance between explicit occupation-based curricula and observed practice education experiences. The study indicates the need for further research into the role curricula content, and in particular practice education, plays in the multidimensional formation of professional development within entry-level programmes. [ABSTRACT FROM AUTHOR]

Aims and objectives. This paper aims to analyse the concept of advanced nursing practice critically and to demonstrate an appreciation of the development of the role of the advanced nurse practitioner in the Irish context. Background. The concept of advanced nursing practice has existed in the US since the 1960s and in the UK since the early 1980s. The first signs of the advanced nurse practitioner began to emerge in Ireland in the late 1990s as a result of increasing demands and changes occurring within nursing and health care. Currently, there are 31 advanced nurse practitioners in the country, many of whom practice in the general setting. Strategies are in place to introduce advanced nursing practice into other nursing disciplines in the future. Methods. A literature review was conducted to address the various issues inherent within this concept. Results. There is a body of evidence indicating that advanced nursing practice has brought about an improvement in patient outcomes. In light of this, the advanced nurse practitioner has a valuable role to play in providing a beneficial contribution and filling a gap in healthcare services. Conclusion. This paper has demonstrated that nursing continues to be a dynamic and ever-changing phenomenon where the onus is firmly on the advanced nurse practitioner as expert, leader and collaborator, to capture the hearts and minds of nurses and healthcare workers, so as to challenge traditional values and transform clinical practice. Failure to do so may allow medicine or other interested parties to shape the future of nursing or even absorb it. Relevance to clinical practice. Nurses working at an advanced level are striving to develop their expertise, initiate nurse-led services and practice, in collaboration with other professionals in an effort to provide the highest quality care to the patient. Although the idea of the advanced nurse practitioner is relatively new to nursing in Ireland, it is the result of an idea whose time has come and there is nothing more powerful than an idea whose time has come. [ABSTRACT FROM AUTHOR]

This paper gives a ‘discursive’ account of the contemporary development of nursing and midwifery research in the Republic of Ireland in the context of advancing professionalism. Initially, the paper views the landscape by placing research in the current framework of Irish nursing and midwifery. It then examines the map of our present location by documenting a baseline. It ascertains the signposts that are in place by exploring the strategic direction for development. Finally, it uses the compass to orienteer the route through the various obstacles by examining the challenges of the role of the joint appointee leading the implementation of the national Research Strategy for Nursing and Midwifery in Ireland. [ABSTRACT FROM AUTHOR]

This paper explores findings from an exploratory study on sibling relationships following adoption reunion in adulthood. The qualitative data was gathered through in‐depth interviews with 33 adopted adults who were reunited with their birth sibling(s) through an adoption agency in the Republic of Ireland. The findings throw light upon the development of the emotional, often complex, relationships which may emerge when siblings meet for the first time in adult life. Factors influential in facilitating or hindering these post‐reunion relationships are discussed. The important insights are then considered in the context of the wider international literature on adoption, search and reunion. [ABSTRACT FROM AUTHOR]

Aim The educational approach towards practice placement education in health-related disciplines has changed in recent years. The use of collaborative or peer learning models has increased, associated with positive effects on desired outcomes such as learning, competence and reflective practice. At present, there is little published literature on the implementation or use of such models in dietetics practice placement education. The aim of this study was to conduct a pilot study of a collaborative peer learning 2 students to 1 educator (2:1 model). Methods Experienced practice placement educators from four clinical sites in the discipline of dietetics in the Republic of Ireland were invited to participate in the study and form an advisory group. Feedback from this group was used to inform the design and development of a framework to guide the wider implementation of the 2:1 model. Results Feedback from the pilot study was largely positive, with all four sites willing to facilitate a 2:1 model again. The main recommendation was that the practice placement educators require more practical information on the implementation of a 2:1 model, particularly the facilitation of the peer feedback process. In response to this feedback, the Lynam framework was designed, which is the focus of this paper. Conclusions This pilot study of a 2:1 model in dietetics practice placement education informed the design and development of a framework for implementation of the model. Further research into the use of the 2:1 model for practice placement education and the effectiveness of the Lynam framework to guide the implementation of this model is required. [ABSTRACT FROM AUTHOR]

The views and opinions of people who use mental health services are being increasingly acknowledged in relation to rights-based, socially-inclusive, and recovery-oriented care. However, little is known of the experiences of lesbian, gay, bisexual, and transgender ( LGBT) people in this respect. The aim of the present study was to explore the experiences and needs of LGBT people in relation to mental health services. The study was an exploratory design utilizing mixed methods. Both quantitative and qualitative data were collected using a survey instrument ( n = 125) and in-depth semistructured interviews ( n = 20) with a sample of people who had completed the survey. This paper will report on the findings from the interview data. The data were thematically analysed, and the main themes that emerged included accessing services, treatment choices, mental health service experiences, and other supports. The findings inform the discussion, and recommendations are made in terms of future mental health practice, education, and research. [ABSTRACT FROM AUTHOR]

A growing body of literature has shed light into the process of conducting research with people with intellectual disabilities (ID). However, there is limited research on the feasibility of conducting research projects including various groups of people with ID, their supporters, and researchers. This paper reviews three studies conducted with these three groups of people in light of their feasibility, the knowledge generated, and their impact on individual and social change. This study used a reflective analysis focused on the main findings from the three studies, focus groups with people with ID and supporters who conducted the research, and interviews with people to whom the findings were disseminated. The analysis suggested that a team approach including active supporters and experienced researchers was critical to their feasibility. The studies generated knowledge particularly on the perspectives of people with ID on their rights. As a result of participation in these studies, some changes at the individual and social levels occurred, but these were relatively limited. The implications of this analysis for future research are discussed in the context of the implementation of the United Nations Convention on the Rights of Persons with Disabilities. [ABSTRACT FROM AUTHOR]

Background Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. Methods In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. Results and conclusions The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. Accessible Abstract This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in working together and plan to work more to make this type of research happen. [ABSTRACT FROM AUTHOR]

This paper explored the subject of physical touch occurring between social workers and children in the Republic of Ireland. Here, it was maintained that touch practices occupy an ambiguous area for social work practitioners. The empirical component was based on interviews that were conducted with a small group of practitioners in one particular Irish county. The study provided insight into the social workers' personal experiences of, and opinions on, touch with children in the context of their practice. Despite a lack of prescriptive 'do's and don'ts' regarding physical touch and social work, the findings suggested that social workers do not consciously engage in physical touch with children. Rather, touch occurs as a result of practicality and safety concerns for a child. Recognized as beneficial in terms of communication, reassurance and conveying empathy, touch practices are also guided by a fear of misinterpretation, allegations and concern for causing harm to the child. The place of physical touch with children is regarded as being outside the remit of the social work role. Despite this, a majority of those interviewed spoke of a desire to have more discussion and guidance on the subject of physical touch with children within their work locations. [ABSTRACT FROM AUTHOR]

This paper engages with recent debates in geography and associated disciplines that are concerned with the wider analytic issues to be confronted in researching an elite. Drawing on a case study of the construction of a policy position on GMOs and the Environment in Ireland, the methodological challenges encountered researching up the hybrid elite central to this development are interrogated. In particular, emphasis is placed on the politics of time, which becomes central when a new sector is emerging, and meanings and definitions are being constructed. [ABSTRACT FROM AUTHOR]

Accessible summary The Research Active Programme (RAP) was a set of eight sessions offered at the University of Limerick enabling self-advocates to learn how to do research on their own or with others., This short paper describes this programme and celebrates the great work RAP graduates are doing now., A link to a poster designed by six self-advocates about RAP is included. [ABSTRACT FROM AUTHOR]