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Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Background: This paper aims to explore the impact of recovery education on recovery knowledge, attitudes and the quality of life of students undertaking recovery education, contributing to the evidence base in relation to the impact of recovery education. It also explores the experiences of all stakeholders involved in the co‐facilitation, delivery and participation in recovery education. Setting and Participants: This study evaluates the experiences of stakeholders involved in the co‐facilitation, delivery and participation in recovery education across four recovery colleges in Ireland. Participants included students undertaking recovery education, peer educators, education facilitators, recovery college coordinators and practitioner/service providers. Discussion: Findings from the quantitative survey when compared with extant literature suggest that students had a good understanding of recovery education. The social aspect of empowerment for growth and wellbeing was identified through themes relating to co‐production and facilitating student learning. Support for equitable access to recovery education, including co‐production for both the public and staff, was identified as a challenge for the future. Conclusion: The findings from both the qualitative and quantitative components of the study show the positive impact of recovery education on stakeholders while acknowledging the need for ongoing support for people working in recovery education and the development of services. In particular, there was a high level of recovery knowledge found in students undertaking recovery education. Patient or Public Contribution: This study utilised a co‐created study design. From inception a steering group comprising stakeholders (peer educators, recovery education facilitators including past recovery college students and nonpeer staff involved in the co‐production of recovery education) directed the conduct of the evaluation. This steering group participated in an iterative process of information sharing, suggestions for evaluation process and language. [ABSTRACT FROM AUTHOR]

Background: Children with Down syndrome have speech and language difficulties that are disproportionate to their overall intellectual ability and relative strengths in the use of gesture. Shared book reading between parents and their children provides an effective context in which language development can be facilitated. However, children with Down syndrome often take a passive role in shared book reading and the use of key word signing (KWS) as a shared book reading technique has never been investigated. Aims: This study aimed to compare children with Down syndrome's participation and use of KWS across two methods of shared book reading – one in which a book had key‐word sign prompts embedded (signed condition) and the other in which a book was read as normal (unsigned condition). Measures of child and parent communicative behaviour were taken in each condition to establish if differences emerged. Methods & Procedures: A total of 36 children with Down syndrome (aged between 18 and 61 months) and their mothers took part in the study. Parent–child dyads were videoed at home reading two books, one in a signed and one in an unsigned condition. Child measures included total number of signs produced in each condition and levels of attention and initiation as measured by the Pivotal Behaviour Rating Scale. Parent measures included total number of utterances, mean length of utterance (MLU) in morphemes and vocabulary diversity (VOCD). Parental measures were transcribed using the Codes for Human Analysis Transcripts (CHAT) software and analysed by the Computerised Language Analysis software (CLAN). Contrasts in outcomes between the signed and unsigned conditions were estimated using Poisson and linear mixed‐effects models, determined by the type of data. Outcomes & Results: Results showed that children attempted to sign significantly more in the signed than unsigned condition, as well as showing significant increases in their levels of attention and initiation. There was also a significant increase in the total number of utterances used by parents in the signed versus unsigned condition and a decrease in MLU. VOCD was similar in both conditions. Conclusions & Implications: This study shows that the simple act of embedding key word signs into commercially available books, during shared book reading between parents and young children with Down syndrome, positively affects children's participation (initiation and attention) and use of KWS. The use of KWS as a core shared book reading technique may therefore be a fruitful avenue to facilitate growth in the language abilities of young children with Down syndrome. What this paper adds: What is already known on this subject: Most children with Down syndrome have significant speech and language difficulties, with relative strengths in the use of gesture. Shared book reading is an activity reported to positively affect language. However, children with Down syndrome are reported to take a passive role in shared book reading and are therefore more dependent on their parents to use techniques that facilitate their levels of participation, in order to maximise potential benefits. To the best of our knowledge, the communicative effects of embedding key word signing (KWS) in shared book reading have never been examined with children with Down syndrome. What this paper adds to existing knowledge: This is the first study to investigate the communicative impact of parents embedding KWS in a shared book reading activity with their young children with Down syndrome. Our findings show that this relatively simple manipulation resulted in Increase in children's sign attempts.Increase in children's overall participation in shared book reading (indicated by levels of attention and initiation).Increase in the number of utterances produced by parents (primarily as a result of repetitions).Decrease in parental mean length of utterance. These findings suggest that embedding KWS in shared book reading is likely to facilitate increased language abilities in this cohort. What are the potential or actual clinical implications of this work?: Shared book reading is part of the daily routine for many parents and their children with Down syndrome. Integrating KWS is a relatively simple adaptation to this activity which is likely to enhance children's language skills. Therapists can encourage parents to do this at home to support work carried out at school and in a clinical setting. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke aphasia (PWA) are more likely to experience serious mood disorders compared with those without. Emotional regulation may be important for influencing life participation after stroke. Understanding emotional regulation in the context of aphasia is important for promoting personally defined recovery, psychological well‐being and life participation. Aims: To explore how individuals experience and regulate negative emotional responses to aphasia as part of re‐engaging with life. Methods & Procedures: In‐depth semi‐structured qualitative interviews with 14 PWA were conducted. The focus and design were developed with public and patient involvement contributors. Reflexive thematic analysis was applied. Outcomes & Results: Analysis generated three themes, which captured inherent diversity across participants in terms of emotional experiences, responses and regulation strategies: (1) emotional upheaval at all stages of recovery; (2) regulating emotional upheaval; and (3) discerning possibilities for life participation. Emotional regulation occurred both within and without the context of formal support services. Conclusions & Implications: Individuals may be differently (en)abled in responding positively, with implications for aphasia psychological support and self‐management interventions. The findings may inform future interventions to optimize well‐being and personally meaningful outcomes for PWA. WHAT THIS PAPER ADDS: What is already known on the subject: PWA experience significant psychosocial upheaval and are at risk of mood disorders. Emotional regulation may be important for influencing one's emotional state, social participation and relationships after stroke. There is a need to better understand the ways in which PWA experience and regulate their emotions to develop better support for personally defined recovery. What this paper adds to existing knowledge: PWA may experience significant and pervasive mood disorders in the long term after stroke. This may be compounded by worries for their children's well‐being. Some, but not all, regulate emotions by drawing on positivity, determination, gratitude or stoicism. Having (supportive) opportunities to experience the impact of aphasia is important for discerning helpful strategies and participation opportunities. What are the potential or actual clinical implications of this work?: Confronting altered abilities requires supportive, responsive opportunities sensitive to emotional responses. Opportunities for peer support and/or meaningful emotional support and compassion from family and friends are important therapeutic targets. Therapeutic input should pay attention to any familial and parenting concerns that may be compounding low mood. Although emotional regulation and recovery may occur without formal support, mental health services must be organized in such a way that PWA can access as needed. [ABSTRACT FROM AUTHOR]

Background: An increasing number of children in the UK and Ireland are growing up speaking more than one language. The many advantages of bilingualism are acknowledged; however, this increased linguistic diversity presents particular challenges for speech and language therapists (SLTs). The case is often more complex with speakers of minority languages such as Welsh and Irish, which are acquired almost exclusively in bilingual contexts. Lack of appropriate standardized assessments for bilinguals is a key issue for SLTs internationally; however, little is known about the practices, personal perspectives or wider challenges faced by SLTs in assessing minority language skills. We focus on SLTs working with English–Irish bilinguals across Northern Ireland (NI) and the Republic of Ireland (ROI) where status, use and exposure to Irish differ significantly. Aims: To investigate the perceptions and practices of SLTs in NI and the ROI in the assessment of bilingual English–Irish‐speaking children. Methods & Procedures: A 33‐item online survey was distributed to SLTs working with children in community settings in NI and the ROI. Outcomes & Results: A total of 181 SLTs completed the survey. The majority of respondents had bilingual English–Irish‐speaking children on their caseloads; however, less than one‐quarter had assessed Irish language skills. Responses indicate confusion as to whether best‐practice guidelines applied in this particular context where the majority of speakers have English as their first language and limited domains of exposure to Irish outside of the education system. Resources available to assess Irish language skills were found to be limited. Informal analysis of language samples emerged as the most popular assessment tool. SLTs in the ROI had a significantly higher level of competence in the Irish language than SLTs in NI. This reduced the challenge of assessment. Many SLTs reported scoring assessments standardized on monolingual populations when assessing English language skills in bilingual English–Irish‐speaking children. Conclusions & Implications: Our findings highlight the challenges faced by SLTs in meeting best‐practice guidelines in the assessment of speakers of minority languages such as Irish. Further work is needed to ensure clinicians and other professionals have access to information and enhanced training on bilingual language acquisition in minority language contexts and implications for assessment and diagnosis. This study underlines the need for further research on the acquisition of minority languages as well as the development of alternative assessment tools to assist SLTs in meeting the needs of this population. What this paper adds: What is already known on the subject: Existing research indicates that SLTs face challenges in assessing bilingual clients. Lack of assessment resources is a global issue, particularly with respect to minority languages. Emerging research indicates that SLTs and other professionals are dissatisfied with current resources for assessing Irish‐speaking bilinguals and are struggling to meet best‐practice guidelines. What this paper adds to existing knowledge: The status of the Irish language differs significantly between NI and the ROI, while English is the dominant language in both areas. This study provides the first exploration of current assessment practices for bilingual English–Irish‐speaking children as reported by SLTs across both regions. The challenges of assessing bilingual clients in many other countries are mirrored by SLTs in NI and the ROI. The majority of children acquiring Irish are doing so in a specific context: the immersion education setting. This raises uncertainty for SLTs about whether the definition of bilingualism actually applies. Despite clinicians and clients sharing the same majority language, the complexity of minority language assessment remains. What are the potential or actual clinical implications of this work?: SLTs require specific support and resources to help them meet the assessment needs of bilingual English–Irish‐speaking children. Ongoing education and training are required for clinicians and other professionals to facilitate understanding of the complexities surrounding bilingual speakers of minority languages and the application of best‐practice guidelines. A greater understanding of the context in which children are acquiring Irish and the impact this may have on their acquisition of English would further support clinicians in identifying speech, language and communication needs in this population. [ABSTRACT FROM AUTHOR]

Background: During the COVID‐19 pandemic, Ireland implemented a series of stringent public health measures, including lockdowns and suspension of non‐urgent clinical services. Aims: To investigate the impact of the COVID‐19 pandemic on the demand for and delivery of speech and language therapy (SLT) services in Ireland in 2020. Methods & Procedures: Two iterations of a cross‐sectional, mixed‐methods online survey were distributed to speech and language therapists (SLTs) and SLT students in Ireland in the spring and autumn of 2020 using a combination of purposive and snowball sampling. The spring survey yielded 407 responses (including 14 from SLT students), while 197 respondents took part in the autumn (13 students). Survey analysis focused on questions related to the impact of the COVID‐19 pandemic on delivery and demand for SLT services (student responses were excluded from analysis owing to low response rate). The largest group in respect of experience were senior SLTs (58% in both surveys). The work settings most strongly represented were HSE primary care (34.4%) and disability services (26.5%) in the spring, and HSE primary care (39.1%), acute hospitals (22.8%) and disability services (20.8%) in the autumn. We used descriptive statistics, including distribution analysis, to analyse the quantitative data. Free text data were interrogated through a variant of a conventional qualitative content analysis. Outcomes & Results: In the spring, cessation of face‐to‐face services featured prominently (reported by 65.6% versus 14.2% in the autumn), across SLTs' work settings, except acute hospitals. Lower demand was reported by 42.5% in the spring, while in the autumn, 48.7% indicated that demand was higher. SLTs experienced large‐scale redeployment (spring: 45.9%, autumn: 38.4%), with HSE primary care SLTs redeployed most (spring: 71.7%; autumn: 62.3%). The need to suddenly pivot to telehealth was a significant challenge in terms of training, technology and logistics. New ways of working emerged and gradually, telehealth became more embedded. SLTs also had to adapt to working with evolving public health measures, such as space restrictions and personal protective equipment (PPE) requirements. Across the two survey iterations, SLTs reported tensions between demands and capacity: while referrals and demand initially decreased in the spring, this led to increased backlog and longer waiting lists, ongoing and increasing pressure on clinicians and services, and negatively impacted clients and families. Conclusions & Implications: The COVID‐19 pandemic had a significant negative impact on SLT services in Ireland. Going forward, the SLT profession and its services will require sustained support to mitigate long‐term negative consequences, such as increased waiting lists. WHAT THIS PAPER ADDS: What is already known on this subject: The negative impact of the COVID‐19 pandemic on SLT services has been examined in several countries. Ireland imposed more stringent pandemic‐management measures than many other countries, and it was therefore warranted to investigate how SLT services in the country were affected. What this study adds to the existing knowledge: Face‐to‐face SLT services effectively ceased in most non‐urgent contexts in spring 2020. This coincided with large‐scale redeployment of SLTs to non‐SLT contexts. By autumn 2020, demand had increased again, but not all services had recommenced, and redeployment was still a factor. Although SLTs adapted to the ongoing changes imposed by the pandemic, they voiced concern about increasing backlogs and longer waiting lists, ongoing and increasing pressure on both SLTs and services, and negative impacts on clients and families. What are the actual and clinical implications of this work?: The COVID‐19 pandemic had a significant negative impact on SLT services in Ireland. Going forward, the SLT profession and its services will require sustained support to mitigate long‐term negative consequences, such as increased waiting lists. [ABSTRACT FROM AUTHOR]

Background: A lack of standardisation of documentation accompanying older people when transferring from residential to acute care is common and this may result in gaps in information and in care for older people. In Ireland, this lack of standardisation prompted the development of an evidence based national transfer document. Objectives: To pilot a new national transfer document for use when transferring older people from residential to acute care and obtain the perceptions of its use from staff in residential and acute care settings. Methods: This was a pre‐ and post‐study design using purposive sampling following the STROBE guidelines. The pilot was conducted in 26 sites providing residential care and three university hospitals providing acute care. Pre‐pilot questionnaires focused on current documentation and were distributed to staff in residential care (n = 875). A pilot of the new paper‐based transfer document was then conducted over three months and post‐pilot questionnaires distributed to staff from both residential and acute care settings (n = 1085). The findings of the pilot study were discussed with multidisciplinary expert advisory and stakeholder groups who recommended some revisions. This consensus informed the development of the final design of the new revised transfer document. Results: Pre‐pilot: 23% response rate; 83% (n = 168) participants agreed/strongly agreed that existing documentation was straightforward to complete but could be more person‐centred. Post‐pilot: 11% response rate; 75% (n = 93) of participants agreed/strongly agreed that the new transfer document promoted person‐centred care but recommended revisions to the new document regarding layout and time to complete. Conclusions: This study highlighted some of the challenges of providing safe, effective and relevant transfer information that is feasible and usable in everyday practice. Implications for practice: Standardisation and being person‐centred are important determining factors in the provision of relevant up to date information on the resident being transferred. [ABSTRACT FROM AUTHOR]

Background: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study. Methods: The IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS. Findings: In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard. Conclusions: There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling. Accessible Summaries: When the parents of people with intellectual die or can no longer provide care and support, brothers and/or sisters may take over the role.Little is known about the lives of these brothers and sisters and whether they need support.Our study asks brothers and sisters about their lives, their health and the good and more difficult things about being a carer.This paper reports on the results of four surveys over 9 years.Most brothers and sisters felt that their health was good but because many reported health problems, more support should be available to brothers and sisters who are carers. [ABSTRACT FROM AUTHOR]

Background: There is increasing recognition of the impact that dementia has upon swallowing and at mealtimes, and the significant effect this can have on people with dementia's health and well‐being. However, there remains a paucity of evidence for assessment and intervention practices for dysphagia and mealtime difficulties. Furthermore, there is a limited understanding of how speech and language therapists (SLTs) support people with these dementia‐related issues and what are the barriers and facilitators to practice. Further research is therefore needed to guide policy as well as service guideline and delivery development. Aims: To establish the current practices of SLTs managing dementia‐related dysphagia and mealtime difficulties in the UK and Republic of Ireland (ROI), and to establish their opinions and experiences of what challenges or supports to practice they have encountered. Methods & Procedures: An anonymous, cross‐sectional web‐based survey was developed and distributed to SLTs working in the UK and ROI. Respondents completed a questionnaire that consisted of open and closed questions across nine topic areas. Closed responses were evaluated using descriptive statistics; open‐ended questions were analysed using conventional content analysis. Outcomes & Results: A total of 310 people accessed the survey, and 125 respondents completed it fully. While respondents agreed on their role in dysphagia management, they varied in their views on the extent of their role in managing mealtime difficulties. Additionally, their self‐rated knowledge of mealtime difficulties in dementia was lower than their dysphagia knowledge. The respondents predominantly based their management decisions on their clinical experience of working with people with dementia. They primarily used compensatory strategies and frequently cited the need for family and care staff training. Respondents also highlighted barriers to effective management and training provision such as inefficient referral systems, a lack of carer knowledge and lack of SLT resources. Conclusions & Implications: The results provide valuable insight into the issues facing SLTs practising in this area. The SLTs surveyed considered dysphagia a core part of their role when supporting people with dementia; however, respondents' views on mealtime difficulties varied. This highlights the need to establish consensus guidelines on the SLT's role in order to avoid variations in service delivery that could negatively impact the health and well‐being of people with dementia. Moreover, further research to develop efficient and effective training for care staff supporting mealtime difficulties and dysphagia is essential. What this paper addsWhat is already known on the subjectResearch indicates that people with dementia develop dysphagia and mealtime difficulties as dementia progresses. SLTs often manage these, but there is no research on the effective assessment and management procedures, or guidance on best practice.What this paper adds to existing knowledgeThis paper provides an understanding of the variation in practice across the UK and ROI. Respondents described barriers to delivering an effective service and frequently linked these to the SLTs' resources as well as service constraints.What are the potential or actual clinical implications of this work?These findings support the need for future research to develop guidelines for SLT practice in this area. They also support the need to examine resource allocation and workforce management to enable SLTs to manage dementia‐related dysphagia and mealtime difficulties effectively. [ABSTRACT FROM AUTHOR]

Background The speech and language therapy profession is required to provide services to increasingly multilingual caseloads. Much international research has focused on the challenges of speech and language therapists' (SLTs) practice with multilingual children. Aims To draw on the experience and knowledge of experts in the field to: (1) identify aspirations for practice, (2) propose recommendations for working effectively with multilingual children with speech sound disorders, and (3) reconceptualize understandings of and approaches to practice. Methods & Procedures Fourteen members of the International Expert Panel on Multilingual Children's Speech met in Cork, Ireland, to discuss SLTs' practice with multilingual children with speech sound disorders. Panel members had worked in 18 countries and spoke nine languages. Transcripts of the 6-h discussion were analysed using Cultural-Historical Activity Theory (CHAT) as a heuristic framework to make visible the reality and complexities of SLTs' practice with multilingual children. Outcomes & Results Aspirations and recommendations for reconceptualizing approaches to practice with multilingual children with speech sound disorders included: (1) increased training for working with multilingual children, their families, and interpreters, (2) increased training for transcribing speech in many languages, (3) increased time and resources for SLTs working with multilingual children and (4) use of the International Classification of Functioning, Disability and Health (ICF-CY). Conclusions & Implications The reality and complexities of practice identified in this paper highlight that it is not possible to formulate and implement one 'gold standard' method of assessment and intervention for all multilingual children with speech sound disorders. It is possible, however, to underpin practice with a framework that ensures comprehensive assessment, accurate diagnosis and effective intervention. This paper proposes that by working towards the aspirations of the Expert Panel, SLTs can be empowered to facilitate appropriate services for multilingual children regardless of the context in which they live and the languages they speak. [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]

Abstract: Background: There is an increasing recognition that sleep is an important aspect of health and well‐being, and this is particularly the case in infancy and early childhood where sleep behaviours and patterns can result in substantial problems. Methods: This paper draws on Wave 1, 2, and 3 data from Growing Up in Ireland, the national longitudinal study of children in Ireland to provide an overview of sleep patterns in a population of children aged 9 months (n = 11,112), 3 years (n = 9,790), and 5 years (n = 8,996). The anonymised data made available through the Irish Social Science Data Archive were analysed using descriptive statistics. Results: Findings from the analysis show that about two thirds of infants (66.9%; n = 7,433) and just under 3 quarters of children aged 3 years (72.8%; n = 7,127) go to sleep between 7:00 p.m. and 9:00 p.m. and about 3 quarters (78.6%; n = 7,070) of 5‐year‐old children are in bed by 9:00 p.m. Just under half of infants (48.5%; n = 5,000) wake up between 7:00 a.m. and 8:00 a.m. and 13.5% (n = 1,500) wake up between 6:00 a.m. and 7:00 a.m. More than 80% (n = 8,889) of mothers report their 9‐month‐old infant wakes up at least occasionally and 13.8% report it happens every night. Almost all infants nap during the daytime, with the majority (56.0%; n = 6,222) doing so for between 1 and 2 hours. About one third (65.4%; n = 6,402) of 3‐year‐olds take daytime naps, but only 5.0% (n = 449) of 5‐year‐olds do so. Substantial proportions of mothers report children's sleep patterns are at least a small problem for them (ranging from about 30% (n = 3,333) in infancy to 22% (n = 2,444) at 3 years and 12% (n = 1,079) at 5 years). Conclusions: These findings highlight a substantial unmet need, and it is suggested that public health nurses and health visitors have a key role to play in supporting positive sleep patterns in early childhood. [ABSTRACT FROM AUTHOR]

This paper draws on three studies conducted in Australia, Canada and Ireland which explore the factors influencing research utilisation in the child protection sector in each country. The paper recognises that research uptake is complicated by a number of factors. It also acknowledges critiques which cite the equally significant influence of ideologies, context, unpredictability, time constraints and political expediency. However, all three studies recognised the increasing importance of evidence-based practice. The methods used in the three studies were not identical but the frameworks used were sufficiently similar to enable the classification of both common and dissimilar barriers and facilitators to research use. Those which they identified were categorised into four types: individual, organisational, environmental and characteristics relating to the nature of research material. Implications were identified for policy makers, service providers and research producers. The point was made that we now live in a period where unprecedented means of knowledge transfer and exchange provide unique opportunities to improve the lives of children and families. Copyright © 2013 John Wiley & Sons, Ltd. Key Practitioner Messages Avail of opportunities to attend learning events., Draw on research findings when conducting assessments, writing reports, devising intervention plans, evaluating programmes and tendering for funding., Establish links with research centres., Become involved in the conduct of research., Support colleagues (champions) who display particular interest and motivation in the use of research evidence by recognising and/or rewarding effort., Avail of opportunities to undertake further study that includes a research component. [ABSTRACT FROM AUTHOR]

This paper explores a retrospective analysis of children's file data as a research method of gathering information on children's experiences of informal disclosure of child sexual abuse. This study extracted data from files where children were seen for a child sexual abuse evaluation in Ireland and the children were deemed to have given a credible account of abuse by the professionals concerned. A content analysis was conducted using themes identified in previously published research, based on direct interviews with children about their experiences of informal disclosure. The paper discusses the relative merits and limitations of this method, through reporting on the findings of the file analysis and comparing these findings with findings obtained from a smaller sub-sample of this sample of children, who were interviewed about their experiences of disclosure. It is suggested that this method is worth exploring with a larger sample size which would enable statistical analysis and thus explore the predictive factors influencing early informal disclosure. Frontline services can contribute to the knowledge base on what helps children tell through service-based research that uses data already collected from evaluation interviews with children, thus eliminating the need to interview children for research purposes. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Frontline professionals gather useful data on a daily basis on informal disclosures of child sexual abuse., Practitioners can contribute to the knowledge base on informal disclosure by systematically gathering information from service users., We need more information on what helps children tell. We therefore need to explore innovative methods of gathering such information directly from children in ways that do not rely on interviewing children repeatedly yet include the child's voice. [ABSTRACT FROM AUTHOR]

Background: Critical care bed capacity per capita in Ireland is among the lowest in Europe. The COVID‐19 pandemic has put additional strain on an over‐stretched healthcare system. COVID‐19 community assessment hubs (CAHs) were established to prevent unnecessary admission to acute hospitals and to reduce infection spread. Objective: The aim of this study was to assess the effectiveness and acceptability of CAHs and identify how the service might be improved or adapted for possible future use. Design: This was a mixed methods study, incorporating co‐design with clinical stakeholders. Data collection was via an online survey and semistructured telephone interviews with staff and patients conducted between January and May 2021. Setting and participants: Thirty‐one patients completed the survey and nine were interviewed. Twenty interviews were conducted with staff. Results: The findings suggest that the CAH model was successful in providing a dedicated pathway for assessing patients with COVID‐19 symptoms, whilst mitigating the risk of infection. Patients were particularly positive about the timely, comprehensive and holistic care they received, as well as the accessibility of the clinics and the friendly attitudes of the staff. Staff welcomed the training and clinical protocols which contributed to their feelings of safety and competency in delivering care to this cohort of patients. They also highlighted the benefits of working in a multidisciplinary environment. Both staff and patients felt that the hubs could be repurposed for alternative use, including the treatment of chronic diseases. Discussion: This study describes staff and patients' experiences of these hubs. An unexpected outcome of this study is its demonstration of the true value of effective multidisciplinary working, not only for the staff who were deployed to this service but also for the patients in receipt of care in these hubs. Conclusion: This multidisciplinary patient‐centred service may provide a useful model for the delivery of other services currently delivered in hospital settings. Patient or Public Contribution: An earlier phase of this study involved interviews with COVID‐19‐positive patients on a remote monitoring programme. The data informed this phase. Several of the authors had worked in the CAHs and provided valuable input into the design of the staff and patient interviews. [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]

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]

This paper explores the experience of post-separation fathering, in the context of a prior history of domestic abuse from the perspectives of mothers, fathers, children and professionals participating in a three-year doctoral research project. A mixed methodological research design conducted over two phases involved both the completion of survey questionnaires by 219 mothers and the participation in focus groups and individual interviews by children and young people, mothers, fathers and professionals. The findings highlight clear evidence of post-separation contact facilitating the continued abuse of women and children. The findings also highlight a lack of attention to the parenting of abusive men who were identified as struggling to realise their fathering aspirations and take responsibility for the impact of their abusive behaviour on their children and ex-partners. Particular constructions of family life are found to sustain the often unmonitored presence of abusive men in post-separation family life. This paper concludes by asserting the need to prioritise the construction of fathers as 'risk' in the context of post-separation father-child contact. Doing so does not mean excluding fathers from children's lives; rather, what is critical is to find ways to ensure that abusive men can be 'good enough' fathers. Copyright © 2013 John Wiley & Sons, Ltd. Key Practitioner Messages Separation is not a 'vaccine against domestic violence', with women and children at risk of continued abuse in the post-separation period., Abusive men need to be held responsible for their abusive behaviour before the potential for safe contact can be considered., All of the key players - mothers, children and fathers - may need support from the impact that domestic violence has on parenting capacity and family life. [ABSTRACT FROM AUTHOR]

Abstract: Increasingly, experts as deemed by personal experience or mental health service use, are involved in the education of nurses; however, accompanying research is limited and focuses primarily on opinions of nurse educators and students. The aim of this study was to develop an understanding of the potential contribution to mental health nursing education by those with experience of mental health service use. The research was part of the international COMMUNE (Co‐production of Mental Health Nursing Education) project, established to develop and evaluate co‐produced mental health content for undergraduate nursing students. A qualitative descriptive design was adopted with data collected through focus group interviews in seven sites across Europe and Australia. Experts by experience (people with experience of distress, service use, and recovery) co‐produced the project in partnership with nursing academics. Co‐production enriched the process of data collection and facilitated the analysis of data from multiple perspectives. Two themes are presented in this paper. The first focuses on how experts by experience can enhance students’ understanding of recovery by seeing the strengths inherent in the ‘human’ behind the diagnostic label. The second highlights the importance of communication and self‐reflection on personal values, where students can explore their own thoughts and feelings about mental distress alongside those with lived experience. Interacting with experts by experience in the classroom can assist in challenging stigmatizing attitudes prior to nursing placements. These findings can be used to inform international nursing curricula by increasing the focus on nursing skills valued by those who use the services. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to: (1) use cognitive task analysis to describe final year nursing students situation awareness in recognising, responding and escalating care of deteriorating patients in ward settings; and (2) make recommendations for training and practice. Design: A mixed methods cognitive task analysis with a convergent triangulation design. Method: Data collection involved observations of 33 final year nursing students in simulated deteriorating patient scenarios and retrospective cognitive interviews. A process tracing technique was applied to identify the cues to deterioration participants perceived; how cue perception altered as situational demands increased; the extent that participants made connections between perceived cues and reached a situational understanding; and the factors that influenced and constrained participants situation awareness. Qualitative and quantitative findings are woven together and presented using descriptive statistics, illustrative quotations and timeline extractions. Results: The median cue perception was 65.4% and 57.6% in the medical and surgical scenarios, respectively. Perception was negatively influenced by incomplete vital sign monitoring as situations escalated; limited physical assessments; passive scanning behaviours; poor task automaticity; and excessive cognitive demands. Incomplete perception, poor cue integration and underdeveloped mental models influenced situational understanding. Escalation calls did not always accurately reflect situations and a reporting mindset was evident. Clinical exposure to deteriorating patients was described as variable and opportunistic. Reporting Method: The study is reported in accordance with the Good Reporting of a Mixed Methods Study (GRAMMS) checklist. Patient or Public Contribution: Patients and public were not involved in this research. [ABSTRACT FROM AUTHOR]

Do all newly qualified primary-level teachers report the same experience of child protection practices in their schools? Drawing on findings from a recent Irish study, this paper will consider the operation of official child protection guidelines in schools based on the reported awareness and knowledge of a sample of newly qualified teachers. Their knowledge of child protection guidelines pertains to experience of induction into child protection practices upon taking up employment in the school and their awareness of a designated liaison person, school child protection policy and the procedures for reporting a suspected child protection issue within the school. The findings of this research indicate that schools' compliance with national guidelines on child protection is certainly inconsistent and such an ad hoc approach can be seen to impact on the perceived confidence levels of newly qualified teachers in dealing with child protection issues in the school. Given the crucial role teachers play in the safeguarding of children and the potential for strengthening this role, this paper argues for the standardisation of the operation of child protection procedures across all schools and the provision of training for all school staff. Copyright © 2013 John Wiley & Sons, Ltd. Key Practitioner Message There is a clear need for enhanced, standardised pre-service and in-school child protection training., New entrants to the teaching profession should automatically be inducted into the school child protection policy., Schools should have clearly articulated child protection policies and action plans which are consistently communicated to staff on a regular basis., The potential for teachers to promote child welfare and protection should be acknowledged and realised. [ABSTRACT FROM AUTHOR]

The worldwide growth in formal youth mentoring programmes over the past two decades is partly a response to the perception that young people facing adversity do not have access to supportive relationships with adults and positive role models in their communities to the degree they once had. Formal mentoring programmes facilitate the development of a friendship or ‘match’ between an older volunteer and a young person, with the objective of supporting the young persons’ personal and social development. Drawing on 66 semi‐structured interviews with young people, parents, mentors and caseworkers associated with nine youth mentoring matches in the Big Brothers Big Sisters Programme in Ireland, this paper analyses the forms of social support evident in the mentor–mentee relationships and highlights how the mentoring relationship was perceived to have impacted on the well‐being of the young people participating. The findings reflect the consensus in the mentoring literature that close, well‐established mentoring relationships have the potential to bring about meaningful change in the lives of young people. [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]

Accessible summary People with intellectual disability live within their community and will require services to support them at end of life., Often people with intellectual disability are denied access to essential services., This paper identifies the experiences of community nurses caring for persons with an intellectual disability and palliative/end-of-life care needs., Summary Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of palliative care services and integration of people with intellectual disability into their communities has resulted in an increased demand and greater diversity in the population groups accessing palliative care services. This study aims to describe the provision of community nursing support for persons with an intellectual disability and palliative/end-of-life care needs from the perspective of community nurses. A quantitative descriptive cross-sectional survey was employed. On receipt of ethical approval, data were collected through self-reporting questionnaires and descriptive analysis was conducted to describe frequencies and to identify patterns of the respondents using spss version 18. Only 85 people with an intellectual disability were referred to palliative/end-of-life care services over a 3-year period. Those delivering care expressed challenges including, understanding communication styles, late referrals, lack of time, knowledge and skills. Highlighted within the study were the benefits of liaison between family and professional and nonprofessional carers. Findings provide insight into the importance of teamwork, advance planning, knowing the person and best practice in providing palliative/end-of-life care for people with intellectual disability through collaboration. [ABSTRACT FROM AUTHOR]

Background The specific healthcare needs and concerns for older lesbian, gay, bisexual and transgender ( LGBT) persons have not been explored to any degree within Ireland. Aims and objectives The aim of this paper, which is part of a larger study, is to detail older LGBT persons' usage, experiences and concerns with accessing healthcare services, disclosing their LGBT identity to professionals, preferences for care and their suggestions for improvement in services, including nursing services. Design A mixed methods research design combining quantitative survey and qualitative interview approaches of equal significance was used. Methods 144 respondents completed an 84-item questionnaire concerning their use of healthcare services, experiences and needs. The qualitative phase involved in-depth interviews where 36 participants' experiences and concerns around health services were explored more in-depth. Quantitative data were analysed using descriptive statistics. Qualitative analysis employed the constant comparative process to generate the leading themes. Results Only one in three participants believed that healthcare professionals have sufficient knowledge of LGBT issues, and less than half (43%) felt respected as an LGBT person by healthcare professionals. Although 26% had chosen not to reveal their LGBT status for fear of a negative response, many positive encounters of coming out to healthcare professionals were relayed in the interviews. LGBT persons have specific concerns around residential care, particularly in relation to the perception that the Irish healthcare services emanate a heteronormative culture. Conclusions Irish healthcare services need to reflect on how they currently engage with older LGBT persons at both an organisational and practitioner level. Consideration needs to be given to the specific concerns of ageing LGBT persons, particularly in relation to long-term residential care. Implications for practice Healthcare practitioners need to be knowledgeable of, and sensitive to, LGBT issues. [ABSTRACT FROM AUTHOR]

Background This paper summarises the main points of a review of the Status of Health Librarianship & Libraries in Ireland (SHELLI). The review was commissioned to gain a broad understanding of what was happening in practice in Ireland; acquire knowledge about international best practice, and to inform strategic plans to develop and sustain health libraries and librarianship in Ireland. Methods A Mixed Methods approach was used: a literature review; an online survey distributed to health librarians; Semi structured interviews with key stakeholders; a focus group drawing participants from the survey. All evidence was triangulated. Results New roles for health librarians needed development and the changing educational needs of health librarians warranted attention. Increased collaboration across institutional boundaries needed more consideration, especially in relation to access to e-resources. Marketing of library services was crucial. Irish health library standards, needed to be updated and enforced and a proper evidence base established. The literature provided a number of examples of potentially useful initiatives. Conclusions A strategic plan of action was drawn up in three areas: (i) to identify champions and promote visibility of health service libraries, (ii) to establish a body of evidence and (iii) to support service development and staff mentoring. [ABSTRACT FROM AUTHOR]

Introduction: Maternity services underwent much change during the COVID‐19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID‐19 pandemic on those experiences and perceptions of care. Methods: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first‐trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi‐structured interviews, virtually all due to COVID‐19 restrictions, between June 2020 and February 2021. These were audio‐recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. Results: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first—'Disconnected'—describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in‐person care was highlighted. Conclusion: Our analysis provides rich insights into the significant impacts that the COVID‐19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. Patient or Public Contribution: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co‐authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes. [ABSTRACT FROM AUTHOR]

Background and Aims: People who inject drugs (PWID) have a substantial risk of acquiring human immunodeficiency virus (HIV) infection. From 1999 to 2000 in Ireland, there were 115 new HIV cases among PWID, 40% in individuals aged under 22 years. However, over the past two decades, HIV incidence has declined among PWID in western Europe, including Ireland. We investigated secular changes in HIV incidence among PWID in Ireland. Also, new HIV cases in two time‐periods 2000–09 and 2010–18 were compared by sex, age group, area of residence and country of birth. Design and Setting: Longitudinal observational study in the Republic of Ireland, 2000–18. Cases and Measurements: A total of 753 new cases of HIV in PWID were diagnosed. Diagnosis rates of HIV in PWID were calculated and changes in rates over the period were modelled. Findings: During the period 2000–18, HIV incidence among 15–29‐year‐old PWID in Ireland declined from 5.69 to 0.11 cases per 100 000, equivalent to a yearly decline of 0.22 [95% confidence interval (CI) = 0.14–0.31, P < 0.001] cases per 100 000. Among PWID aged 30–64 years, HIV incidence declined annually by 0.06 (95% CI = 0.02–0.10, P = 0.007) cases per 100 000 from 1.80 to 0.57 cases per 100 000. Comparing 2000–09 to 2010–18, there was a relative increase in HIV cases among older adults (P < 0.001), and those born outside Ireland accounted for a growing minority of cases (from 14.7 to 28.0%, P < 0.001). Changes by sex (P = 0.10) and area residence (P = 0.39) were not statistically significant. Conclusion: Since 2000, Ireland has achieved an ongoing reduction in the incidence of human immunodeficiency virus among PWID, and this is most evident among young adults. The reduction has occurred in the context of a reasonably comprehensive, health‐led and harm reduction‐orientated national drugs strategy. [ABSTRACT FROM AUTHOR]

The current study aimed to explore the factors that influence how social workers make decisions and develop their decision‐making skills in care proceedings, and to identify effective support and intervention to develop social worker decision‐making skills. The study employed a mixed thematic approach across two phases of study: an initial inductive thematic analysis of responses to an online qualitative questionnaire and then a mixed thematic analysis of follow‐up focus groups and interviews with social workers working in various social work roles within England and Northern Ireland. The findings identified a number of themes that help to understand the decision‐making skills of social workers; thorough assessment skills, relationship‐based anti‐oppressive practice, being mindful of the lived experience of the child and using critical reflection to make complex decisions. Wider structural factors that support or hinder decision‐making, particularly in respect of organizational support and management supervision were also identified. Social workers can be supported to develop decision‐making skills through additional training, reflective learning and management support to develop their practice wisdom within this field. [ABSTRACT FROM AUTHOR]

Background: Modifiable factors such as substance use, lack of attendance at antenatal care, overweight or obesity and sleeping position are associated with a higher risk of stillbirth. This qualitative study aimed to explore women's experiences of modifiable factors during pregnancy and their awareness of stillbirth. Methods: Purposive sampling was implemented by hospital staff in a large tertiary maternity hospital in Ireland between November 2020 and March 2021. Women were approached during their stay in the hospital and were invited to participate in a semistructured interview 3–5 months later. Eligible women were primiparous, >18 years of age and had an uncomplicated pregnancy and delivery. Eighteen women who consented to be followed up were interviewed at 3–5 months postpartum. Thematic analysis was used to analyse the data. Results: Four themes were identified: attitudes towards behaviour change, awareness regarding stillbirth and risk factors, the silence around stillbirth and risks, and attitudes towards receiving information about stillbirth. Women spoke about behaviour change in terms of outcomes, and most changes (e.g., ceasing alcohol consumption) were perceived as easy to manage. Awareness of stillbirth was limited among the women interviewed, and the association between risk behaviours and stillbirth was not known by any woman. Results suggest that there is a silence around stillbirth, including in antenatal care, which hinders information provision. However, most women highlighted the value of receiving information and extra education about modifiable risk factors and stillbirth. Conclusion: There is a general lack of understanding of the link between behavioural risk factors and potential pregnancy outcomes such as stillbirth. Providing further information to women about stillbirth and providing additional support with behaviour change might contribute to enhancing preventive efforts. Patient or Public Contribution: Patients were involved in this study by providing their experiences of antenatal care which were used as primary data. [ABSTRACT FROM AUTHOR]

This research reports on qualitative interviews with 31 participants who are Irish parents, identify as lesbian, gay, bisexual, queer (LGBQ), and who expressed difficulty in the process of obtaining birth certificates for their children. Our aim was to use personal information management (PIM) and personal digital archiving (PDA) as a lens to explore the invisible work that the Irish government requires of a sexual minority parent group to obtain "equal" treatment in the birth registration and birth certificate process. Our findings suggest overlap with existing information behavior research (IB) that explore invisible information work, IB as a burden, information marginalization, information vulnerability, and information overload, and the everyday in IB. We propose a new framework: personal information burden (PIM‐B) which is characterized by additional PIM activities, negative affect, lack of identity self extension to the personal information, and additional information seeking. We propose that a PIM‐B may be used as an indicator of inequality in future research. [ABSTRACT FROM AUTHOR]

Graduate entry healthcare students experience many challenges during their academic journey. The impact of these challenges needs to be considered to support students through their training and education. In this study, we examined the impact of experiencing these role conflicts (at the outset of the academic year), for example, family and caring responsibilities, activities with family/friends, and daily tasks/chores, on the academic performance (at the end of the academic year) of graduate‐entry healthcare students. We also investigated the potential of students' self‐efficacy for learning to mitigate the extent to which such role conflicts impact academic performance. Findings demonstrate that the more graduate entry healthcare students experienced conflicts between their life responsibilities and their academic responsibilities, the worse their academic performance was across the year. This negative relationship was somewhat mitigated by high self‐efficacy for learning. The practical implications of our research suggest the need to provide specific mitigation strategies to support healthcare students regarding conflicts between their life/family responsibilities and their academic work. [ABSTRACT FROM AUTHOR]

Aims: To develop a questionnaire to identify Intensive Care survivor needs at key transitions during the recovery process, and assess its validity and reliability in a group of ICU survivors. Methods: Development of the Support Needs After ICU (SNAC) questionnaire was based on a systematic scoping review, and analysis of patient interviews (n = 22). Face and content validity were assessed by service users (n = 12) and an expert panel of healthcare professionals (n = 6). A pilot survey among 200 ICU survivors assessed recruitment at one of five different stages after ICU discharge [(1) in hospital, (2) < 6 weeks, (3) 7 weeks to 6 months, (4) 7 to 12 months, or (5) 12 to 24 months post‐hospital discharge]; to assess reliability of the SNAC questionnaire; and to conduct exploratory data analysis. Reliability was determined using Cronbach's alpha for internal consistency; intraclass correlation coefficients for test–retest reliability. We explored correlations with sociodemographic variables using Pearson's correlation coefficient; differences between questionnaire scores and patient demographics using one‐way ANOVA. Results: The SNAC questionnaire consisted of 32 items that assessed five categories of support needs (informational, emotional, instrumental [e.g. practical physical help, provision of equipment or training], appraisal [e.g. clinician feedback on recovery] and spiritual needs). ICU survivors were recruited from Northern Ireland, England and Scotland. From a total of 375 questionnaires distributed, 202 (54%) were returned. The questionnaire had high internal consistency (0.97) and high test–retest reliability (r = 0.8) with subcategories ranging from 0.3 to 0.9. Conclusions: The SNAC questionnaire appears to be a comprehensive, valid, and reliable questionnaire. Further research will enable more robust examination of its properties e.g. factor analysis, and establish its utility in identifying whether patients' support needs evolve over time. Relevance to clinical practice: The SNAC questionnaire has the potential to be used to identify ICU survivors' needs and inform post‐hospital support services. [ABSTRACT FROM AUTHOR]

This article contributes to a dialogue between childhood studies and the sociolinguistic subfield 'Family Language Policy' ('FLP'). The article argues that the two fields provide complementary vantage points for exploring child agency. It explains a revised version of a model I developed to conceptualise child agency in FLP, consisting of four intersecting dimensions: compliance regimes; linguistic norms; linguistic competence and generational positioning (Smith‐Christmas, Handbook of home language maintenance and development. De Gruyter Mouton, pp. 218–235, 2020a). The article examines two conversational excerpts as a means to illustrating the dynamic and relational nature of child agency and how it is both shaped by as well as shapes interactional practices over time and space. [ABSTRACT FROM AUTHOR]

This article explores the ways in which employees may experience and respond to tensions inherent in the mix of potentially conflicting human resource ( HR) practices that compose hybrid models of employment relations. By drawing on the job demands-resources ( JD-R) literature and viewing HR practices as 'demands' and 'resources,' we explore the impact of performance management and employee voice practices on employee well-being, as exemplified by engagement and emotional exhaustion, in a large public-sector organization in Ireland. Our findings suggest that employee voice mechanisms may act as a resource in both enhancing engagement and in counterbalancing the demands presented by a performance management system, thus reducing the deleterious effects of emotional exhaustion. Our study extends understanding of hybrid models of human resource management ( HRM) and of the ways in which employees manage the contradictory signals that such models may send in terms of performance expectations. © 2015 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Objectives: Exploring views and experiences of public health nurses of their work environment and measurement of care practices at first postnatal visits. Design: An exploratory qualitative design. Data collected using four focus groups and analyzed using thematic analysis. Sample: Nineteen public health nurses from four health service regions in Ireland participated. Results: Two themes emerged. Theme one identified "challenges of providing a quality service." Public health nurses identified workload demands and that the working environment can detract from the ability to provide a quality service. Challenges within the home, language barriers, and lack of support from management were key issues. Theme two identified "challenges of measuring quality of public health nursing practice." While Measuring practice through quantitative outcomes such as key performance indicators were viewed as inadequate to measure the quality of care provided, positive views of using quality process indicators to measure the quality of their practice emerged. Conclusions: Key issues concern the working environment of public health nurses and challenges of providing and measuring care practices. Absence of appropriate supports and resources means public health nurses work hard to provide quality care. Public health nurses were confident they would score high on quality process measurements of their practice. [ABSTRACT FROM AUTHOR]

This paper describes how peer assessment was implemented in an undergraduate nursing program in Ireland to enhance student engagement, and reports students' ( n = 37) experiences of the process. The process involved second year Bachelor of Nursing Science students developing marking criteria and marking two of their colleagues' assignments anonymously. A qualitative descriptive design using focus group interviews was used to collect data on students' experiences. Demographic data were collected through questionnaires. The analysis identified three themes: (i) impact on student engagement; (ii) challenges of peer assessment; and (iii) making it better. The findings revealed that most students enjoyed the process, and that peer assessment facilitates and enhances student engagement. The findings also provide evidence to support the self-regulation theory of learning. A detailed account of the methods used to implement peer assessment is also provided, which might be useful for other nurse educators seeking to implement peer assessment at an undergraduate level. [ABSTRACT FROM AUTHOR]

Background: Implementing task specific training is a commonly reported challenge for less experienced therapists. A potential method to improve the ability of recent graduate and student therapists is to upskill regarding task specific training via an online education resource. Purpose: To evaluate the use and acceptability of the TRAIN program as an online learning resource for physiotherapists. Methods: Data from Google Analytics was sourced to determine use of the program and details about the users. Users of the TRAIN program were also invited to complete two surveys; prior to beginning and upon completion of the program. The surveys collected information about the demographics of the users, perceptions of usefulness of the online resource and overall sentiment. Results: Almost 6000 new users interacted with the TRAIN modules during the 15‐months study period. The surveys indicated a high level of usability (mean score 9/10, SD 1.5) and clinical utility (mean score 8.8/10, SD 1.6) of the TRAIN program. Perceived knowledge and user confidence in implementing task‐specific training was higher for those users completing the post compared to those completing the pre‐module survey (knowledge 1.9 and confidence 1.7 out of 10 points higher). Recurring comments in the open‐ended feedback pertained to the usefulness, clarity, and ease of use of the TRAIN program. Discussion and Conclusion: This study provides preliminary evidence supporting the use and acceptability of the TRAIN program as an online learning resource for physiotherapists. This further contributes to the growing body of literature indicating online learning is generally a well‐received teaching tool for physiotherapists. [ABSTRACT FROM AUTHOR]

Background: There is some evidence that health and social care professional (HSCP) teams contribute to enhanced patient and process outcomes in increasingly crowded emergency departments (EDs), but the views of service users and providers on this model of care need investigation to optimize implementation. Objective: This qualitative study investigated the perspectives of key ED stakeholders about HSCP teams working in the ED. Methods: Using a participatory design, we conducted World Café focus groups and individual interviews in two Irish hospital sites with 65 participants (purposive sampling) including ED patients and carers/relatives, ED doctors and nurses, HSCPs and pre‐hospital staff. Data were thematically analysed using NVivo software. Results: Participants reported that ED‐based HSCP teams could improve quality and integration of care and staff experience (Theme 1) and would be appropriate for older adults with complex needs and non‐urgent complaints (Theme 2). Concerns were raised about operational and relational barriers to implementation (Theme 3), and changes in processes and culture were considered necessary for HSCPs to work successfully in the ED (Theme 4). In contrast to service providers, service users' concerns centred on the importance of positive communication and relations (Theme 5). Conclusions: Our study indicates potential acceptability of HSCP teams working in the ED, especially to care for older adults; however, operational and relational aspects, particularly developing interdisciplinary and integrated care, need addressing to ensure successful implementation. Differences in priorities between service users and providers (relational vs operational) highlighted the usefulness of gathering views from multiple stakeholders to understand ED processes. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to explore the incidence, use, and scope of patient diaries in paediatric intensive care units (PICUs) in the United Kingdom and Ireland. Design: This was an electronic survey sent to 30 PICUs in the United Kingdom and Ireland. Results: All PICUs (n = 30) responded, and 43% (n = 13) offered diaries. For those units that did not supply diaries, the reasons given were concerns around the legal and professional implication of using diaries. Parental/carer consent to use a diary was obtained informally (79%, n = 11), and once there was agreement to provide a diary to parents, diaries were usually started immediately (72%, n = 12). Parents were the main contributors to the diaries (94%, n = 17), and the diaries were populated with photographs (94%, n = 15), drawings (100%, n = 16), and stickers (94%, n = 15). The reasons for offering diaries were to fill gaps in memories, to engage with families, and to explain what has happened in lay language. The owner of the diary was reported to be the family (82%, n = 14) and the child (12%, n = 2). Conclusions: The use of patient diaries is an evolving intervention in paediatric intensive care settings in the United Kingdom and Ireland. This national survey has provided a clearer picture of how this intervention is used in the United Kingdom and Ireland. PICU patient diaries are used in a significant number of units, and how these are used is relatively standardized, although in some different ways from general ICUs. Relevance to clinical practice: This survey provides a baseline for future exploration, understanding, and promotion of patient diaries, as a well evaluated tool for the critically ill child and his or her family. [ABSTRACT FROM AUTHOR]

Purpose: This study illustrates the huge untapped potential of quantifying the impact of culture in making meaningful comparisons across groups. Our focus is on cross‐national differences in nurses' reports of their relations with physicians, and how the measurement of this complex construct and the evaluation of true differences are related to dimensions of national culture. Design: We examine across 14 European countries the association between indices of national culture from the seminal work of Hofstede and 39,435 nurses' ratings of their relations with physicians. Multilevel confirmatory factor analysis was used to evaluate strong factorial invariance across countries and to examine the influence of power distance and masculinity. Findings: There was wide variation across countries in nurses' reports of their relations with physicians. Strong factorial invariance was shown for a one‐factor model, which confirmed that across countries the seven survey items measure a common factor of physician‐nurse relations. This model showed no country bias for any of the seven survey items, which suggests that differences across countries reflect true differences. These true differences were significantly associated with variation in country values of power distance, which showed a significant negative correlation with physician–nurse relations. Conclusions: Continuously pursuing a better understanding of characteristics that impact the studied indicators, such as national culture, is elementary to better understand the construct under study. In this application, country values of power distance negatively impacted nurse‐reported relations with physicians, which strongly varied across countries. Clinical Relevance: Better nurse‐reported relations between nurses and physicians link to higher nurse job satisfaction, lower emotional exhaustion, better nurse‐perceived quality of care, and lower patient mortality. The Practice Environment Scale of the Nursing Work Index is an excellent instrument to characterize variation in working relations between nurses and physicians as well as physicians' professional posture towards nurses. [ABSTRACT FROM AUTHOR]

SUMMARY: Background: Successful management of chronic kidney disease (CKD) depends on patients′ self‐management efforts. Mobile health applications can empower patients with CKD to manage their own condition. We developed, with patient involvement, the MiKidney smartphone application. Aim: Evaluate the MiKidney app as an aid to empowering patients with CKD to become more engaged in the management of their condition. Design: Pilot single group pre‐ and post‐test intervention study. Setting: Renal clinic of an urban University Hospital in Ireland. Patients: Aged over 18 years with CKD and able to use a smartphone. Sample size based on expression of interest and availability of free smartphones (n = 23); three patients withdrew prior to T3 data collection (n = 20). Measurements: Data were collected at T1 (baseline), T2 (week 6) and when exiting the study (T3, 12 weeks) on physical activity, body measurements and blood parameters. Information on app usage and patient satisfaction collected at T2 and T3. Results: There was significant improvement in the six‐minute walking test (p = 0.02), total cholesterol (p = 0.023) and LDL cholesterol (p = 0.005) serum levels and a significant decrease in waist circumstance (p = 0.00) and body fat (p = 0.01) measurements. Eighteen participants found the MiKidney app easy to navigate. Conclusion: The MiKidney study highlights the viability and usability of the MiKidney app. It has the potential to empower and motivate patients to understand and self‐manage their condition by providing them with the necessary information on renal diet and symptom management. Additionally, tools such as exercise tracker and reminder alerts are available on a readily accessible user‐friendly platform. [ABSTRACT FROM AUTHOR]

Accessible summary: ·Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person.·Most carers felt a little stressed or strained.·Older carers felt less stressed than younger carers.·The value of supports that help carers was identified. Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants' self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings. [ABSTRACT FROM AUTHOR]

Objectives: The primary objective was to understand the contemporary public health nurse's (PHN) role and the issues that they face working in rural Ireland. Design and Sample: This study was based on an ethnographic approach with 13 PHNs working in rural areas in the South West of Ireland. Measurements: A combination of solicited diaries and semi‐structured interviews referred to as the diary/interview method were employed. Diaries were used by the PHNs to record their working day on a staggered basis from February to April 2017 with the subsequent interviews carried out in June and July 2017. Results: Working as a PHN in a rural area presented a number of issues such as time spent on traveling as a result of geographical disparity & poor road networks; client transport issues; a sense of working in isolation; communication issues with respect to computer/tablet hardware availability, mobile phone and broadband connectivity and the availability of, and the physical access to services. Conclusion: PHNs operating in rural communities face a distinct set of challenges that they have a limited ability to address. Legislators, health care providers and policymakers need to create a supportive environment that helps address these challenges in Ireland. [ABSTRACT FROM AUTHOR]

Family‐focused practice improves outcomes for families where parents have a mental illness. However, there is limited understanding regarding the factors that predict and enable these practices. This study aimed to identify factors that predict and enable mental health nurses' family‐focused practice. A sequential mixed methods design was used. A total of 343 mental health nurses, practicing in 12 mental health services (in acute inpatient and community settings), throughout Ireland completed the Family Focused Mental Health Practice Questionnaire, measuring family‐focused behaviours and other factors that impact family‐focused activities. Hierarchical multiple regression identified 14 predictors of family‐focused practice. The most important predictors noted were nurses' skill and knowledge, own parenting experience, and work setting (i.e. community). Fourteen nurses, who achieved high scores on the questionnaire, subsequently participated in semistructured interviews to elaborate on enablers of family‐focused practice. Participants described drawing on their parenting experiences to normalize parenting challenges, encouraging service users to disclose parenting concerns, and promoting trust. The opportunity to visit a service user's home allowed them to observe how the parent was coping and forge a close relationship with them. Nurses' personal characteristics and work setting are key factors in determining family‐focused practice. This study extends current research by clearly highlighting predictors of family‐focused practice and reporting how various enablers promoted family‐focused practice. The capacity of nurses to support families has training, organizational and policy implications within adult mental health services in Ireland and elsewhere. [ABSTRACT FROM AUTHOR]

Survivors of clerical institutional childhood abuse (ICA) experience poor mental health outcomes in adulthood. Resilience research with this group has focused on psychological adjustment and we know less about the factors across the social ecology that support positive adaptation, including the impact of migration. This study explores the influence of resilience‐enhancing factors across the social ecology on the mental wellbeing (MWB) of Irish emigrant survivors of ICA and how this compares with non‐migrant survivors. Fifty‐six survivors based in the UK and 46 based in Ireland completed a quantitative survey that assessed resilience‐potentiating resources and associations with MWB. A further nine participants, resident in the UK, engaged in a structured interview which aimed to further explain these quantitative data. Results indicate more resilience‐enhancing resources across the ecology of emigrant survivors of ICA. Personal skills and competencies, such as problem‐focused coping, altruism and defiance, and social inclusion were associated with MWB regardless of country of residence. For the migrant group, social identity not defined by institutional care facilitated social inclusion. Migration to the UK and informal instrumental support in the aftermath of institutional care were identified as key turning points towards resilience. Key Practitioner Messages: Multiple factors across the ecology influence the resilience of survivors of institutional childhood abuse (ICA).Resilience strategies for survivors of ICA are contextual and may appear maladaptive to practitioners unfamiliar with the cultural context of this abuse.For Irish emigrant survivors of ICA, problem‐focused coping, defiance, altruism, social inclusion, instrumental support and a social identity not defined by childhood abuse enhanced resilience.Resilience is dynamic and emerges over time for adult survivors of chronic childhood abuse. 'Explores the influence of resilience‐enhancing factors across the social ecology on the mental wellbeing... of Irish emigrant survivors of institutional childhood abuse' [ABSTRACT FROM AUTHOR]

Accessible Summary: We talked to 14 people about what it is like to do inclusive research in the Republic of Ireland.People said that more time is needed to do inclusive research well. They also told us about how hard it can be for all members of the research team to be equally involved in all research stages.Learning to speak up for themselves was something people with learning disabilities said they liked about being an inclusive researcher.Inclusive research teams need to write more about how they work on projects together, to give others ideas about how to do good research that matters to people with learning disabilities. Background: The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations,) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change. Method: This study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland. Results: Thematic analysis using Atlas.ti software yielded three themes: "Continuum of inclusive research," "Value of inclusive research" and "Power relations within inclusive research." Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors. Conclusions: This study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted. [ABSTRACT FROM AUTHOR]

Background: Community participation in primary care is enshrined in international and Irish health policy. However, there is a lack of evidence about how stakeholders work collectively to implement community participation within interdisciplinary teams; community perspectives are rarely captured, and a theoretical underpinning for implementation of community participation in primary care is absent. Objective: To conduct a theoretically informed, multiperspectival empirical analysis of the implementation of community participation via primary care teams (PCTs) in Ireland. Methods/Design/Participants: Participatory learning and action (PLA) focus groups and interviews were held with 39 participants across four case study sites within a nationally funded programme designed to enable disadvantaged communities to participate in primary care. Normalization process theory (NPT) informed data generation and analysis of how diverse stakeholder groups worked together to implement community participation via PCTs. Results: The various stakeholders had a shared understanding of the value of community participation on PCTs. Motivations to get involved in this work varied, but were strong overall. Challenges to enacting community participation on PCTs included problems with the functioning of PCTs and a lack of clarity and confidence in the role of community representatives at PCT meetings. Informal appraisals were positive, but formal appraisal was limited. Discussion and Conclusion: The implementation and sustainability of community participation on PCTs in Ireland will be limited unless (i) the functioning of PCTs is strong, (ii) there is increased confidence and clarity on community representatives' roles among all health‐care professionals, and (iii) more sophisticated methods for formal appraisal are used. [ABSTRACT FROM AUTHOR]

Background Conceptualizing health literacy as a relational concept, which involves how individuals interact with complex health and social systems, requires a greater understanding of the context of people's health experiences. Objectives To describe individuals' experiences of accessing, understanding, appraising and applying health information; explore the barriers and facilitators to using these skills; and to describe the experience of information exchange in health consultations. Design A longitudinal qualitative methodology with thematic analysis of interviews was used. Health literacy levels were assessed using the HLS- EU-47-Item Questionnaire. Findings are presented from the first round of data collection. Setting and participants Twenty-six participants purposefully selected from a CVD risk reduction programme at three separate time points. Results Four key themes identified: using health literacy capacities for managing health; psychological and structural factors that impact on these capacities; and the relationship quality with the health-care provider ( HCP). Although limited health literacy was prevalent across the sample (65%), all individuals were very proactive in attempting to utilize health literacy skills. Findings emphasize the importance of contextual factors such as the quality of communication with the health-care provider, perceptions of control, attitudes to family medical history, navigating structural barriers and being supported in managing treatment and medication side-effects. Discussion and Conclusion Findings are relevant for health-care providers in order to enhance the patient-provider relationship and to ensure optimum health outcomes for all individuals regardless of health literacy levels. [ABSTRACT FROM AUTHOR]