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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: 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: Online knowledge translation (KT) approaches are becoming increasingly prevalent within healthcare due to their accessibility and facilitation of international support networks. Online platforms enable timely and far‐reaching dissemination of current evidence and best‐practice recommendations. Although there is potential to improve the uptake of rehabilitation guidelines, it is essential to consider the acceptability of online approaches to healthcare professionals to ensure their successful integration within everyday clinical settings. Aims: To establish the prospective acceptability of a theoretically informed online intervention for speech pathologists, Aphasia Nexus: Connecting Evidence to Practice, that aims to facilitate the implementation of aphasia best practice. Methods & Procedures: A mixed‐methods multinational electronic survey based on the Theoretical Framework of Acceptability (TFA) completed by aphasia researchers and clinicians. Outcomes & Results: A total of 43 participants completed the survey with 91% (n = 39) indicating that they would use Aphasia Nexus. Understanding the intervention and how it works (intervention coherence as per the TFA) was the key factor influencing the likelihood of integration within everyday clinical practice. Participants identified potential areas where the intervention could influence service change and also recommended further design and content changes to improve the intervention. Conclusions & Implications: Aphasia Nexus is an acceptable platform for further feasibility testing in the form of a pilot trial within an Australian‐based health service. The study progresses the theory of TFA as it was a valuable framework facilitating the identification of prominent factors influencing acceptability. The study also informs further intervention refinements in preparation for the next stage of research. WHAT THIS PAPER ADDS: What is already known on the subject: Online strategies have the potential to enhance KT and promote the uptake of rehabilitation guidelines. An online intervention, however, can only be effective if implemented well. For this reason, it is essential to establish the acceptability of online interventions to the intended recipients and therefore increase the likelihood of successful implementation. What this paper adds to existing knowledge: This study used a theoretically based framework to establish the acceptability of an online implementation intervention, Aphasia Nexus, to multinational aphasia clinicians and researchers. It demonstrated the value in identifying the prominent factors influencing acceptability to inform further intervention refinements and warrant continuing research. What are the potential or actual clinical implications of this work?: Speech pathologists should use online platforms to drive the implementation of best practice on an international scale. It is important for clinicians to have an in‐depth understanding of online interventions and how they work to enhance their successful uptake into routine clinical practice. Aphasia Nexus is an acceptable online platform for implementing best practice in aphasia. [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: 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]

This paper examines the role of privacy in the health context by investigating the influence of privacy concerns and perceived benefits on individuals' acceptance of health technologies used by healthcare providers and their own adoption of mobile health technologies. The study adopts a two‐stage sequential mixed‐methods design. The first stage is a quantitative survey of 447 citizens from two countries. The second stage involves 50 qualitative interviews which further untangle the roles of privacy concern and benefits. The integrated findings provide evidence that a privacy paradox exists. While individuals continue to express a high desire for privacy, their consideration of the benefits and privacy concerns prior to adoption is largely skewed toward the benefits, due to a lack of privacy knowledge, emphasis on immediate gratification, overestimation of the benefits, and underestimation of the risks. The study further extends the privacy calculus theory to the health context and acknowledges the factors impacting this comparison of benefits and privacy concerns prior to and postadoption of a new technology. The study provides actionable insights for practice, highlighting the importance of privacy education to foster awareness and control mechanisms to negate the potential negative effects of privacy concern. [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]

A nurse prescribing scheme has recently been implemented within the Republic of Ireland. This paper reports on the views of community mental health nurses on nurse prescribing just prior to the implementation of the scheme. Data were gathered through a 13-item questionnaire administered to 103 members of the Association of Community Mental Health Nurses in Ireland. Results indicated a distinct difference of view between male and female community mental health nurses, with female nurses having greater reservations towards the desirability of nurse prescribing in relation to educational preparation and impact on professional relationships. Overall, only 17% of respondents favoured being supervised in their prescribing practice by their consultant psychiatrist. The paper concludes that there is ambivalence towards prescribing in this important group of nurses which may need to be taken into account if nurse prescribing is to be successfully implemented within the Irish mental health service context. [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]

Social support is widely seen as an integral component for coping with the stresses of everyday life. While there are various sources and types of support potentially available to young people, it is perhaps less obvious the extent to which young people differentially experience these sources and types. Anecdotal evidence suggests that context, culture and other factors unique to local life shape the many dimensions of social support for youth. In this paper, we seek to examine this research need in more detail by focusing on a broad range of factors shaping youth social support and youth well-being. Drawing on mixed methods research, we examine social support evidence for adolescents in Florida, USA, and Offaly, Ireland. Through this research, we investigate how the connection between social support and well-being bears out in these two different socio-cultural contexts; second, we seek to understand whether types and sources of social support differ among youth in both countries; and what relationship exists between well-being and types and sources of support. Comparing similar measures of social support across two distinct societal contexts allows us to determine similarities and differences, while also providing suggestions for application that can shape future programmes and policy. [ABSTRACT FROM AUTHOR]

This paper considers the impact of pubertal status and pubertal timing on disordered eating in Irish adolescents. 1190 boys and 1841 girls completed the Eating Attitudes Test-26, the Eating Disorder Inventory-III and self-report measures of pubertal status and pubertal timing. Regarding pubertal status, greater maturity in girls was associated with increased overall eating concerns, higher drive for thinness and higher levels of body dissatisfaction. In boys, greater maturity was associated with lower drive for thinness and lower body dissatisfaction. Regarding pubertal timing, early-maturing girls showed the most eating concerns, the highest drive for thinness, scored highest on bulimic symptoms and were the most dissatisfied with their bodies. In contrast, late-maturing boys had more bulimic symptoms and more dissatisfaction with their bodies than on-time peers. The findings suggest that puberty itself is a risk factor for disordered eating for girls rather than boys; however, pubertal timing is a risk factor for both. Copyright © 2012 John Wiley & Sons, Ltd and Eating Disorders Association. [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]